Hi,
For those of you that have been following my posts, you know I've been diagnosed with "Hodgkin's" lymphoma & am starting treatment.
I was told at diagnosis, that "Hodgkin's" is "the easiest cancer to cure," and I'm holding onto that with all my strength. I understand "Non Hodgkin's" is curable, too--but, a little more extensive in treatment (if I'm understanding right).
Most of the people that are my age (early 50's) seem to have "non Hodgkin's"---or at least it seems that way. All these wonderful "ladies" I've been talking to, here on this forum, all seem to be relatively young (20's & 30's) ...or so it seems. I talked to my Oncologists' nurse yesterday, who told me a "survivor of Hodgkin's" (female) had come into the office to visit & had reminded my nurse of me. The nurse said she was "around my age, had a punk haircut, and she thought we were alot alike,"--- which made me think, that there's not that many of us diagnosed with Hodgkin's, around my age :confused:
I guess I'm just wondering why "Hodgkin's" seems to be more prevalant in younger people. I'm still trying to figure out the difference between "Hodgkin's" and "Non Hodgkin's," --- I think it's whether or not the disease has metasticized---am I right? I've been on websites and still can't figure it out....
I guess I'm "thinking out loud" again----
I think as your body ages, even though I'm in good shape, it's harder the older you get. I see the "younger" ladies expressing how treatment is hard, but they still seem to be able to work/go to school/etc... I admire that---I can't possibly see how I could function like that right now... but, then again, perhaps it's just the first treatment knocking me for a loop & not my 'age.'
Sorry for the rambling---I guess I'm feeling "old" today...Although, I remember my Oncologist ---one of the first things he said was, "Well...you're 'relatively' young....and healthy..." So that's a good thing!
Any feedback, peeps?
:) S.

hey, i'm sorry if this sounds like my nursing report but this might clear up some questions for you,

Hodgkins disease/lymphoma is most common in people between the ages of 15-40 and 55+. It is also one of the rarest forms of cancer and one of the first cancers to be completely cured using ABVD. There are no known cause but anyone in these catagories ahve a slightly increased chance of developing hodgkins - age (15-40 and 55+), anyone who has a sibling with hodgkins although it is inconclusive if this is due to environmental factors rather than genetic ones. males are more prone to the disease. people who have had the epstein-barr virus (glandular fever) are four times more likely to get the disease and a compromised immune system - HIV/AIDS or after having an organ transplant.

As for differences between HL and NHL, the symptoms and how you are dx are all relatively the same. The only real difference is pathologically. The disease has the mutated cell called the reed-sternberg cell which NHL does not.

I hope that answers some of your questions. I had to do a case study for one of my classes so i thought that I'd do one on me since the doctors keep commenting on my 'rare and exciting story'. It's really helped me understand it more.
xxx

WOW...are you informed, or what???
So, are you studying to become a nurse?
Thanks so much for that synopsis. My ENT told me he'd diagnosed 3 or 4 cases in the last few months prior to me (for Hodgkin's) and he believed it to be "environmental," also. I'm becoming a firm believer that "mold" played a factor in my contacting this, too. Right before my node "popped" out, I'd cleaned our very damp basement for about 5 days straight. Coincidence? Don't know, of course... Also, the fact that I was cleaning kitty litter boxes and NOT wearing my mask. I have kicked myself over & over for that one! I'm being so ultra-conscious now about being clean, concerning my cats---I have Purell everywhere! I've read where "cat scratch fever" can mock lymphoma....which is what I originally thought I had.
Anyway--thanks a million to inform me. Knowledge is power!
:) S.

Non-Hodgkins Lymphoma is an enviormental disease that can happen when exposed to chemical and toxin's. Hodgkins disease affects mostly the lymph nodes and can have a very high cure rate. NHL can affect all ages and can occur anywhere in the body. Some types of NHL are curable and some other
types are not. If someone has HIV or Aids it is harder to cure and usually will
not have a favorable outcome. Hodgkins affects young people but can also
affect someone older or mid life. My mother was diagnosised with NHL after
her sore throat would not go away. It came on suddenly and it started on the base of her tongue. It spread into her lymph node in her neck. She had chemo and had a complete cure and was disease free after 3 yrs. Unfortunately she
passed away from a heart attack. My brother the same yr. was diagnosised
with a different type of NHL where his was growing in his abdomen. The doc said he probably had this for 5-6 yrs before discovering it. He had a pain in his back that was probably a kidney stone and it was discovered on a CT of his abd.
His type of NHL has no cure but can go into remission. He had a course of chemo and also radiation. Unfortunately this past Nov. he was diagnosised with leukemia secondary to the radiation. The oncologist thought this was
a risk he should take to get a cure and not a remission. He almost made it
to 5 yrs. with not sign of disease and then he had pancytopenia and it turned out to be leukemia. He has had 2 rounds of chemotherapy and they are trying to get him in remission and he needs a stem cell transplant in order to
live more than 2 yrs. This has been very devastating for our family and pray that they can find a donor. You have a much better chance of a cure if you
have hodgkins disease and the cure rate is 90% or more. Good luck with your treatment. If they recommend any kind of radiation pay close attention to the risks. Unfortunately my brother and his family only heard cure and did
not hear that it could cause secondary cancers.

Thanks so much, and I'm so sorry for your mother's loss and your brother's illness. Was your mother's heart attack Hodgkin's related? Did she have radiation, too?
Oh dear, this is scaring me some, because I'm only 'one' treatment into my chemo---I have chemo twice a month--every 'other' week---8 treatments in all. Then, I'm told "off" one month--- Then, radiation for a full month, 5 days a wk., weekends off...which will lead me to the end of November. I've read about the secondary cancers, but I wasn't aware it was related to radiation. Perhaps, after my chemo, if I get a clean bill of health, maybe my Oncologist will decide to forgo radiation. Right now, chemo & radiation seems to be the plan.
It seems like you might be "pro" chemo, but "anti" radiation....is that right?
I'm just now, after 5 days of chemo, coming around. I'm trying to remain as positive as possible---since I've read over & over that it's "curable." You're making me question the radiation part.
It seems that most of the people I've talked to that are on the "other side" (cured) only had chemo, now that I think about it.
Should I question my Oncologist tomorrow? This is all so baffling & I so appreciate your input.
Your brother's in my prayers.
Thanks again.
S.

Hi singer,
I've been reading your posts and first off want to say how I brave I think you are. A good friend of our family who is in her 60's was diagnosed with lymphoma last year and is in complete remission. You can do this, just take babysteps. One day at a time. No need to think too far down the road right now, just concentrate on the "today".

I'm on the boards for different reasons but will stop by and check up on you.

Hodgkins is so cureable. You can and will beat this.

marni

Marni,
Such a nice post. Thank you.
Everyone says I'm being brave--- sometimes I just don't feel it, quite like I'm posting it. I'm glad I'm coming off positive, though--- We only learn through adversity, right? I've read where people say "getting cancer was a blessing...etc...because it opened their eyes to what's really important in life..." I'm not that dramatic, but I DO understand that a certain 'type' of person, could possibly be changed....for the better.
I'm happy your friend is in remission. "60's" is still young, according to my mom!
Yes, I'm a "one day at a time" person, myself...although lately, I find myself trying to fast-forward my life. I guess I just want this all to be over & done with. Thanks for reminding me. I needed that! ;)
I so appreciate all these wonderful responses.
S.

Singer78,

I am sorry if I scared you as this must be overwhelming for you. There is always a risk of secondary cancers showing up from radiation and even some types of
chemo. My mother had Rituxin and CHOP with Adramycin which is the standard treatment for her type of lymphoma. Unfortunately the adraimycin can cause heart problems. She had a MUGA scan prior to chemo but doctors are not that
good about follow up studies and she should have been seen by a cardiologist.
I do not know for sure if her heart attack was from that or not. She was still
taking Procrit to build up her red blood cells and was also on Coumadin.
Unfortunately she stopped the coumadin per her dr's request when she was having epidurals in her back. Her hemoglobin had gone up to 12.5 and her RBC's
were normal so I told her to tell them not to give her the Procrit as it can cause
blood clots. She never got a chance as she passed away 2 days later. I moved to Virginia and had always gone with my parents to the doctors to talk for them. I have alot of guilt over this and it has been 3 yrs. I worked in
our cancer center at the hospital in Ft. Laud. and saw some very wonderful
cases where patients had a full cure. I do not know how old you are but I would talk with your doctor about needing radiation. Most of the cases we
treated in our facility had chemo only. Make sure you ask what the benefits
are of having radiation and chemo. What are the potential risks and what area are they going to do radiation. My brother had it on his abdomen which left him vulnerable to getting colon cancer, prostate cancer. They never
mentioned leukemia as a possibility. Unfortunately for him that is the worst
type of leukemia to treat, one that is secondary to radiation. Be informed and
ask many questions. If my brother was told the risks he could have donated
his own stem cells and would not be looking for a donor. My brother and I
are not a match. There is risk with any kind of chemo and radiation but sometimes you have to take the chance in order to be cured and in some cases to live. You have a very treatable cancer with a very high cure rate.
Weigh the pros and cons of radiation and ask the why and the what questions. Make sure they explain everything in terms you can understand and just keep asking questions. A second opinion is always a good way to go
before you go with a treatment you are not comfortable with. Good luck and if I can help you in any way just let me know.

Again, thanks for such a long explanation. You've really taken your time to explain indepth. Thank you.
I'm having ABVD treatment (chemo). I seemed to tolerate it, as well as possible, except for the last "D" drip, which caused my heart to pound (so the nurse's slowed down the drip). It made me terribly anxiety-ridden, and when I came home, I took half a xanax, which helped some. I plan on going over all this tomorrow with my Oncologist. You've brought up some amazing good points for me to address.
I, too, had the MUGA & was told my heart was good. I had so much radioactive stuff in me from tests....it's a wonder I wasn't glowing!
I'm in my (as I like to say) "early" 50's---also, until recently was 1/2 caregiver to my parents. Now, obviously, I can't do much. That's a whole other subject...I have another sister that hasn't helped AT ALL, and I believe the stress of being caregiver, helped add to my disease. I just have to pray about it now, and hope my one sister & nieces/nephew can all help my parents out. I have to be selfish, at this point in my life, and concentrate on me. This is all brand new stuff.
Yes, I will ask many questions. I haven't sought out a 2nd opinion, as I love my Oncologist---and the whole clinic has been wonderful and informative. This is the 1st time I've questioned radiation. I've been plodding along, agreeing with everything, because I SO want to be well again. I think I've had that "deer in headlights" attitude, as of late. These last few months still have me completely topsy-turvy. The further along, though, the more of a grip I'm getting.
You seem really informative. Are you in the medical field?
I just want you to know, I believe "things happen for a reason," --and your post has definitely made me want to seek out more answers.
A million thanks...:)

I just reread your post and realized you worked in a cancer center, so you must be very qualified.

Dear Singer 78
I just want to say that you have a good attitude and that is so important. You have to be your own advocate so if something does not seem right, question it.
Doctors are not without mistakes and a good one will appreciate you questioning them. It keeps them on their toes too. If you feel good with your doctor then that is half the battle. I would only seek a second opinion in regards to your need for radiation. I have been in the medical field for over 30 yrs. and retired 4 yrs ago. I am also in my 50's and will be turning 55 this month. I have always been a patient advocate and found that the medical community as a whole does not want the patient to ask questions as that takes away their time. I feel very differently so I would be the person the patients would come to for answers, comfort and understanding. I too was the caregiver for my Mom and my Dad
in the same year also got rectal cancer. Within 10 months my mom, dad and
brother were all diagnosised with cancer. You have to put yourself first now.
The one thing that I must say is that the doctor has one thing on his agenda and that is to cure you of the Hodgkins. He has to weigh the risks of treatment and long range complications. The patient is in such a whirlwind of
coping that they do not always pay attention to what is being said and do not always hear what the further risks are. My brother says he never heard any risks but yet he signed the paper where it was stated. He went to our
facility so I had access to all his records and worked with his oncologist.

It is strange how I even got on this site. I was surfing the Web for something else and saw your question and I had to see what the question was. When I read it I just felt the need to write you. I guess the old me wanted to be back in my work mode.

Fortunately you have one of the most treatable cancers beside thyroid cancer and some skin cancers. The type of cancer has the highest cure rate. Given your age it is almost a benefit as you do not have the high level of hormones that younger people have. Hormones and cancer are not good. That is why when a young
person gets cancer it is more aggressive because cancer loves to feed on hormones.

Stay strong, be informed and do not become your disease. Go out , enjoy friends and family and laugh. I never thought I could laugh knowing what my family was going through but we had some of our best times during the process. We talked about everything and laughed. I would not give up one
minute that I had with my mother. I took a leave of abscense for 3 months and took her to all her chemo treatments and my daughter even came from
Va. for a month to be with us.

Keep positive thoughts and know that one day soon you will have this all behind you. You can do it. I have seen it over and over the spirit of people
who are ill and how they are an inspiration to the rest of us.

God Bless you
Linda

Dear Singer 78
I just want to say that you have a good attitude and that is so important. You have to be your own advocate so if something does not seem right, question it.
Doctors are not without mistakes and a good one will appreciate you questioning them. It keeps them on their toes too. If you feel good with your doctor then that is half the battle. I would only seek a second opinion in regards to your need for radiation. I have been in the medical field for over 30 yrs. and retired 4 yrs ago. I am also in my 50's and will be turning 55 this month. I have always been a patient advocate and found that the medical community as a whole does not want the patient to ask questions as that takes away their time. I feel very differently so I would be the person the patients would come to for answers, comfort and understanding. I too was the caregiver for my Mom and my Dad
in the same year also got rectal cancer. Within 10 months my mom, dad and
brother were all diagnosised with cancer. You have to put yourself first now.
The one thing that I must say is that the doctor has one thing on his agenda and that is to cure you of the Hodgkins. He has to weigh the risks of treatment and long range complications. The patient is in such a whirlwind of
coping that they do not always pay attention to what is being said and do not always hear what the further risks are. My brother says he never heard any risks but yet he signed the paper where it was stated. He went to our
facility so I had access to all his records and worked with his oncologist.

It is strange how I even got on this site. I was surfing the Web for something else and saw your question and I had to see what the question was. When I read it I just felt the need to write you. I guess the old me wanted to be back in my work mode.

Fortunately you have one of the most treatable cancers beside thyroid cancer and some skin cancers. The type of cancer has the highest cure rate. Given your age it is almost a benefit as you do not have the high level of hormones that younger people have. Hormones and cancer are not good. That is why when a young
person gets cancer it is more aggressive because cancer loves to feed on hormones.

Stay strong, be informed and do not become your disease. Go out , enjoy friends and family and laugh. I never thought I could laugh knowing what my family was going through but we had some of our best times during the process. We talked about everything and laughed. I would not give up one
minute that I had with my mother. I took a leave of abscense for 3 months and took her to all her chemo treatments and my daughter even came from
Va. for a month to be with us.

Keep positive thoughts and know that one day soon you will have this all behind you. You can do it. I have seen it over and over the spirit of people
who are ill and how they are an inspiration to the rest of us.

God Bless you
Linda
Singer 78 I just wanted to also say that Hodgkins and Non Hodgkins has nothing to do with metastatic disease. It is two entirely different types of primary cancers.

Linda,
I'm so thrilled you responded. Your encouraging words, along with so many on this forum, are absolutely priceless.
We're the same age---That's great you're retired and enjoying life. Unfortunately (or fortunately, whichever way you look at it) I will probably never retire, due to the profession I chose years ago. I'm a professional singer (have done jingles on the radio, recorded lots of different styles of music & performed live in many different venues). I still enjoy it, although being self-employed certainly has it's drawbacks. It's all I've ever done & I plan on returning, as soon as I get a clean bill of health. This has thrown my husband and I "for a loop," but, we both knew something was wrong with me the last few years. My stamina wasn't what it once was.
Family issues certainly DO take their toll on you. I'm so sorry about your mom, dad & brother --all at once. That's a lot to handle. I lost my sister in '99, she was the oldest of 4 daughters...the "matriarch," so to speak...It has not been the same without her, and the family hasn't bonded back together, like we should've. I moved into the area of caregiver & professional traveler (for my career) and it just became too much. Stress takes it toll, doesn't it?
I, myself, (up until my diagnosis,) was tampering with alternative things, like bio-identical hormone therapy. That, obviously, has been stopped. I knew something was wrong, so I was blaming it on hormones, like a typical woman would....I was going down the wrong path, wasn't I? Although, they did make me feel somewhat better...I was never "quite right."
Yes, the old "positive spirit" ---there's nothing more important at this stage in my life. We all have our up's & down's, like so many people tell me on this forum....and with support from all you fabulous angels :angel: I've never even met...well, it just restores my faith.
God Bless You, too for getting back to me.
You're arming me with lots of important facts. I'll go to my Oncologist's appt. today totally armed !!!!
Thanks.:)

Good luck to you on your appt. I will keep checking this site to see how you are doing. How exciting to be a singer. That is something God never gifted me with. I sing in my head but vocally you would run. I am an artist since my
retirement. Something I have done all my life but had no time for.

Let us all know how your appt. went and if I can be of any help to you just keep asking question.

The best to you
Linda

Thank you. I had a feeling you were "gifted" in other areas, such as art.
I'll keep you posted.
:)

Hope you had a good appt. today and got some answers to your questions.
Keep the faith.

Linda

Hi Linda,
I had a good appt. with my doctor yesterday. Blood work good, all levels ok..I've lost 3 pounds and they want me to eat anything that works, although I have a very upset stomach from the chemo, at the present, and they're trying to calm it down with Prevacid. The nurse said it takes a few days to build up in your system. I'm so praying it works. I can't quite function properly this way.
I made quite a long list yesterday to ask my Oncologist, and of course, one of the most important questions was about radiation & what I learned from you. He assured me that they only "target" specific areas---In my case, I guess 3 areas. One, where the tumor was (collarbone) and 2 inside my chest. He did a bit of "doctor" talk, where he lost me, but he said since I'm only doing 4 rounds of chemo, as opposed to 6, that's why he's adding radiation. He said it will be in the smallest amounts possible & said, in the long run, it will lessen my chance of secondary cancers. After he left the room, I asked my husband if he understood it all & did he agree, and he said "yes." Of course, he's not in the medical field, but he catches things I don't.
All in all, I really do love my doctor. I asked him once again about my percentage cure-all rate, and he said, better than 80%---more like 85%. I guess those are good odds, considering everything. He also added to my husband, that he "probably saved my life," by finding my collarbone tumor, as early as he did. In early April, I was having him massage my shoulders, and I was lying on the bed, when he said, "What's rolling around in there?" Of course, I freaked out---it kind of "hid" under my collarbone, so "I" might not have found it for weeks. I was with no other symptoms (at that time). He said we caught it early & it probably had been in my system for 2 or 3 years. My goodness....I shudder to think what could've happened.
Anyway--other that stomach upset and a low-grade fever, I'm the "picture of health!" I know... not yet....but, I plan to be.
I thought I'd give you an update, since you helped me so much.
Hope this email finds you in good health, too.
:)

Dear Singer78,
How wonderful you got a good report. He sounds like a great doctor. You will probably be healthier after this then ever. Do you have an appetite? If not you may want to ask him for Merinol. It will increase your appetite and help with
nausea. It was a good thing your husband found the lymph node. I am assuming that is what it was. You are lucky to have treatment quickly. I had
a friend that had a sore throat for almost a year and when they finally did a bx after almost a yr it can back questionable. Then decided not to do anything but the symptoms got worse. Finally I said this is ridiculous. You need another biopsy from another physician and they did and it was Hodgkins disease. Thank
God he is cured and doing very well. That has been over 5 yrs ago. I am so glad that you got the answers you need and feel comfortable with everything.
The best to you. Keep us informed and if you ever have any problems or questions feel free to ask me.

God Bless
Linda

Hi Linda,
Since you were in the medical field, I'd like to ask you about indigestion/constipation that I'm having.
It didn't start until a few days ago. Prior to that, I was able to eat soup, toast, puddings, scrambled eggs---but, then my stomach started acting up. I was told to take Senecot S, which did help (laxative)...but, since then, it's turned into indigestion, too. They started me on Prevacid (one every morning) and said it takes a few days to build up in your system (I've only taken 2 so far). I've added "Tums" to the mix, but the burping/cramping is distressing & is keeping me from functioning.
I shouldn't have done what I did yesterday---We had McDonald's. I had a fish sandwich (fried) and some french fries (fried) That was really, really stupid, and now I'm paying for it with abdominal problems, although they (the cramps) were already starting.
At this point, I'm not sure what to eat. I don't want to lose any more weight, since I've got a long haul of treatment ahead of me left---It's only been ONE week since my treatment. I'm hoping this is still an "adjustment" period and maybe my body will eventually not freak out so badly.
In your experience at the cancer center, do you recall what they did for stomach upsets like this? I'd really appreciate any input.
Thanks so much.
S.
p.s. I will ask about Merinol, too.

Hello
Constipation and indigestion are very common complaints with chemo. Senokot
is good because it is gentle. You do not want to get diarrhea as you do not
want to become dehydrated. If you are having reflux Prevacid is good or Nexium. If you have spasms in your intestines or Irritable Bowel Bentyl is very good. Always drink plenty of water during your chemo as it helps to alleviate
any irritation to your bladder. I guess you know by now eatting fried foods isn't good. If you are really suffering eat scrambled eggs, broth and bland food for
a few days. Drink plenty of water and avoid citrus so you do not add to the
acid in your stomach.

Three things you want to be aware of while you are going through chemo in regards to your blood work are your White blood cells (WBC's) ,The wbc's determine if you have a bacterial or viral infection. Normally when you have chemo the white cells will decrease and make you suspectible to infection.If your white count goes down to a critical level they will give you Neupogen.
Your red blood cells along with your hemoglobin and hematicrit will sometimes
drop to levels that you will need Procrit. When these levels are low that means you have anemia secondary to chemo or that you may be bleeding.
The last thing that can become low are your platelets. Platelets are crtitical
for your clotting. Some patients will never have any problems with any of these becoming critical. In some cases it is determined by the type of chemo you are getting, your general health, age, etc. My mother had all kinds of
problems with her chemo because of her age and she had chronic kidney failure. My brother who had the same chemo had no problems at all and gained 25 lbs or more. It just depends on the status of the patient prior to getting ill that determines how well they do. Most people who are younger and in your age group do well for the most part. It is always good to know when they say that your blood work is good what they really mean. Just
be aware of your body and if something does not seem right tell your health care provider.

Best to you
Linda

Hi Linda & thanks again for a wonderful explanation.
Yes, I had a bad day the last few days---I just posted another post, asking if the forum knew of a "pattern" during one's chemo. If there is one, then maybe I can plan a little---I hope.
I think my Senokot is starting to help a little---but, MY GOODNESS....it took 4 days or so (too much information). But, yes, these stomach upsets can really mess up a day (or 2 or 3)...
I was being stupid by not watching what I was eating, prior to my stomach upset. I think the last straw, was the McDonald's food, although at the time it was absolutely wonderful !!!!!!!!
I wrote down all those drugs that you're mentioning, just in case what I'm on doesn't work. My doctor seems pretty good at monitoring my blood levels right now. They do blood work at every visit, before they even talk to me---which I guess is protocol. He explained, at this point (which is very early) so far, I'm A-ok. Although, I'm losing weight, due to this stomach problem.
I think I'll add some "Ensure" or "Boost" to my regimine & hopefully not lose too much more. I'm about 5'8 and around 130 lbs. I think I've dropped about 10 pounds since the whole thing started. I couldn't eat initially, because of my nerves during diagnosis. As everyone on this forum knows (that has followed my plight) I was a nervous wreck seeking answers. It's always the
"unknown" that is the scariest.
I can't believe your brother actually GAINED weight during chemo....or was it because of steroids? I'm not sure why they give you those---I hope I can stay off them. In the past, I've taken Prednisone, and I'm not a fan of it.
Again, thanks for the valuable info---
You've already helped me with my last doctor's visit and what to ask.
I'm keeping my fingers crossed, that today will be a better day for me. :)
S.

I am glad that you are feeling alittle better. I don't know if you can predict a pattern during chemo. Everyone is so different. Yes my brother is one of the few people who gained weight during chemo. Even now he initially lost about 20 lbs and then gained it all back and some. The doc wants him to lose weight.
He is a big guy anyway over 6 ft. but got over 300lbs. He did have to take
Prednisone but only for the day after his chemo. It is part of the regimen and helps with the chemo process. Usually most folks will not have too many problems with their blood counts but if they do it is usually the ones I stated.
Does not mean you will ever have a problem but if you do you will know what
to expect and not be alarmed thinking it is just you. Alot of people take the
Ensure or Boost and it is a given that you will need it at some point to help with the weight loss. Even my brother drank it cause he said it tasted good. Guess that is why he is over 300 lbs. Yes the unknown is scarier than knowing sometimes. Knowing too much is not so great either. Know just enough to help yourself but not too much that you will get scared. Alot of info on the internet is general and not always easy to understand. What
we would always tell our patients on good days really enjoy yourself and go
out and have fun doing things you like so on the bad days it is easier to cope.
Support from family and friends is crucial and being able to talk about your
illness in an open way is beneficial. Talk about your fears and express your love. I had some wonderful conversations with my mother that I will treasure.
We were always best friends but got even closer when she became ill if that
was possible. She was so very brave and never felt sorry for herself. She
always told me she never doubted that she would get better and she did not
remember most of the things that happened during her illness. I am thankful
for that.

As far as medications they have so many things to help that if something doesn't work there is always another drug that will.. Kytril is also a good drug for nausea and was prescribed alot at our caner center.

Where do you live? Are you still working? It is good to stay active. We had
many patients that continued to work during their treatments. I was always
in awe of their strength and fortitude. My heros. We had so many young people in their early 20's and 30's with cancers that use to be reserved in most cases for middle age folks. Scary. We had one girl barely 30 with colon cancer. Alot of young women with breast cancer in their 20's and 30's as well. What scared me was when we started seeing patients with lung cancer that were in their 40's. We actually saw the most cases of Non-Hodgkins
Lymphoma. I started tracking it and if you had 10 new patients 6-7 had NHL.
I guess because it is a enviormental type cancer it is on the increase. Thankfully is can be treated sucessfully and cured in alot of cases. Not as
good as Hodgkins but getting there.

Hopefully your stomach upset will settle. I am sure that it will when your body becomes use to the chemical agents. Alot of medication will cause stomach upset other than just chemotherapy so always follow the dosage and instruction carefully. If it says to eat with food do it even if it is a dry piece of toast.

Yes it is protocol to do labs first so that if they need to give you Neupogen or Procrit then you can have it on that visit. Labs are the best way for them to
tract your progress and see how well you are tolerating your chemo. Always tell your doctor if you are taking any over the counter medications or vitamins as well. The body is complex and anything you put in it is important.

Feel good and have a nice day.

Linda

My goodness...
So much wonderful information from you, and thanks for taking the time to answer.
I'm feeling better. I'm slowly starting to realize I was somewhat my own worst enemy, and eating the wrong foods. I think I told you, it all started with McDonald's "fries." I don't even eat them WHEN I'M WELL! What the heck was I thinking? Then, I started realizing we have a family curse of lactose-intolerance, that has come & gone with me for years....
So, when I started lightly with broths, then popsicles, sorbet, I started coming around. Senecot helped immensely, too---I'm definitely keeping that around. I just need to be a little smarter about what I eat, during stomach upsets. I assume everyone is different...but, for me I will stay away from milk and milk by-products, until I KNOW my stomach is settled.
They give me a Zofran drip in my drip, before chemo---so far, so good.
Also I've taken Kytril for the next 3 days, followed by phenigren (sp?) when needed. Thank goodness for med's!
I'm in Ohio---and yes, I've taken time off. I can't possibly acquire the stamina it takes for me to perform the way I was. I've needed a rest away from it, anyway....not this way...but, the rest is welcomed.
I've heard that environmental cancers (Hodgkin's) is on the rise, too. That's the first thing my ENT told me, when I was diagnosed....that it's caused by the environment (and a compromised immune system). I truly believe there is a "mold" connection, too. I've seen that on this website, on other posts. We have a very damp basement--No more, after my husband bought a mega-dehumidifer and it literally goes nonstop, on "auto." This area (by the Great Lakes) is damp & humid, generally. Mold is always a problem.
Anyway, thanks again for your information.
I'm sure you're helping many others, too.
:)

I am so happy that you are getting better. Lactose intolerance is not a good thing. My brother has it as well. You sound like you are finding out what you
need to do to have good days. It is funny that you would normally not eat fries but do now. You sound like me.
My husband is from Ohio. He was born in Greenville. He also lived in Richmond
Indiana until he was in the Navy and came to Florida where we met 37 yrs. ago.
I was 17 and he was 24. We have been together ever since and married 35 yrs.
We have one daughter 34 who is married and lives in Va. on the next block from us. That is why we retired and moved here. Well enough about me. Just glad
that you are finding your way.. You will be fine I have no doubt.

Keep in touch and I hope that your journey will be smooth.

Linda

Hi Linda,
Yes, I'm slowly understanding this "chemo" thing. It's really difficult to assess every minute that goes by, with so many different symptoms.
During the weekend, I couldn't hardly move--let alone eat, but today I actually went shopping & came home with broasted chicken/mashed pototoes, etc. It tasted like a 5 star meal !!!!! I think I may only have to stay away from milk, during the hard part of chemo....although, I'm not going to drink a glassful---I'll just be watchful from this point forward.
Greenville? I'm not familiar. I'm so glad you and your husband stuck it out all these years. I, myself, was divorced in the late 80's, but turned around and managed to find my soulmate...my husband now. We've been together 17 years. I guess my 1st hubby did me a favor by "messing" around. I have a son (in his 20's) with my 1st husband, whom I adore. He's been a joy & I'm so proud of him. I would've probably had more children, but I had such bad "back" labor with him, it scared me. The only thing worse than childbirth for me, so far...has been chemo. But, hopefully, I'm learning how to manage it better. Like I said, I have a tendency to be my own worst enemy!
Stay in touch. I have my 2nd treatment Friday. I suppose I'm "moving right along!"
:)

Singer78, Good luck with your chemo on Friday. We had good news 2 days ago.
They found a donor for my brother. A lady 36 yrs. old, no children which they
say is better. . That is all they will tell us. She is an angel. I can not imagine
doing something like this for a stranger. She may be donating bone marrow
which requires a stay in the hospital and anethesia. God bless anyone who is
so selfless. She matches my brother by 90%. My other brother only matched
by 50%. I could not donate due to an auto-immune conditon that I have.
Anyway thought I would share the good news with someone who can appreciate the magnitude of this generosity.

Let me know if you have any problems.

Hugs
Linda

ABSOLUTELY fantastic !!!!!!!!!
I'm sitting here covered with "goose bumps" thinking of her (the donor's) generosity.
That's what it's all about, isn't it?
God Bless your brother, you and all your family.
XO S.

Linda,
I went to my Oncologist today & he informed me that my WBC was low---really low, in fact. I guess it's supposed to be around "1000," and mine was "300." He said not to worry (yeah, right) that we may have to delay chemo & build up my WBC with a growth hormone. On another post, I had a nice person fill me in, and tell me I was "at risk" for infection....and "why didn't your Oncologist inform you?" It's worrying me tonight. I go back tomorrow afternoon to check my blood again. I was supposed to have my 2nd chemo treatment tomorrow, but now I assume it will be delayed. I don't know much about the growth hormone....I was doing some research on it, but started getting a little panicky about some things I read, and quit. This just is all too overwhelming, as I was only diagnosed a little over a month ago---and my head is still spinning.
Since you worked at the cancer clinic, I was wondering if you have an opinion. I forget the name of the growth hormone, but I don't think it can be administered through my port---like I said, I stopped looking online...too scary. Maybe I'm being too dramatic. I "so" wanted to continue on with my treatment and "be on my way" to wellness.
You've been so informative, I thought I'd run this by you for some help.
Hope you're well & being productive as an artist.
Thanks.
S.

hey singer,
just passing thru to see how you were holding up. I know it must suck to have to stop the treatments so soon but i'm sure it's just a minor setback. I know your doc said don't worry and believe me- easier said than done- but if he were really really worried i think he would let you know. Take another week to get your strength back up and go in for round 2 armed and ready. Oh, and try not to surf the internet too much.. I know it's hard when you want answers right away but it can be a bit overwhelming. If I trusted everything i read on the net, I would be an even bigger basket case than I am now. Trust in your oncologist-- that's why he is there, and remember, baby steps. :) Let me know how the bloodwork turns out tomorrow.

The support on here is amazing. Thank you so much for responding.
I couldn't sleep, and thought I'd come in here to see if anyone had some "comforting" words for me....and there it was!
Yes, this does suck to stop so soon....but, like you said---I'll work on building up my WBC (right now, I don't know how) and trust my Oncologist, that he knows what's right. Like I posted earlier, he didn't seem too rattled by it. Maybe that's because he knew I was coming back today & I'd be further monitored.
You're also right about: My internet researching days may be coming to an end. I've found more stuff on there lately to scare me, than to inform me. It's making me take more xanax than ever!
"Baby steps" is right, too---one step at a time. I know that...it's nice to see it written out & coming from a person who took the time to answer me.
Thanx a million....
I needed some soothing....:)
XO S.

Singer 78
Sorry I just read your post. Was out of town with my daughter yesterday.
You will need to get Neupogen injection. On a previous post I mentioned it to you. When you have low white cells (Leukopenia) you will need Neupogen or
Neulasta. It is the same thing just a different brand name. Your WBC's are
usually in the normal range from 6-10. Anything above 10 will mean that you have an infection. 4 and below you will become suspectible to infection. In the 3-2 range and below will you need Neupogen. We have had patients with a
WBC of 0.1 so it can go extremely low. You have to be careful of other people and wear a mask if you go out or just stay home. Anyone that has a cold or
worse can infect you as you do not have enough white cells to fight the infection. Stay away from fresh flowers, fresh fruit, raw foods, no sushi if you like it. Any type of food that may have bacteria on it or that is not washed properly can be dangerous for you. I am not saying this to scare you but you
just need to be careful what you eat during the time where your white count is low. This is not an unusal complication and is expected in most cases. Fortunately we have these great drugs to counteract it. Not all doctors give
you Neupogen right away as you may start producing cells on your own. When your levels go low you need to have more frequent labs. They want
you to stay on schedule with your chemo but if you need to regain your white
cells then they will postpone your chemo. It is the chemo that will make these levels become abnormal.
Like I said this is a very common problems that happens frequently. It is manageable and can be controlled. Stay away from the internet and trying to find answers. Alot of the info is not accurate and if it is you may be looking on the wrong site and getting info for something else.
Also WBC's will not be records in the thousands but will read in numbers like
5.9 or 2.0 (this is an example). So do not think that if something is in the thousands that it will be recorded like that. I hope that this makes sense.
Also every lab uses a different reference range so you have to go by what the normal range is for that lab and not compare it to another lab. In our
lab the range was 4.5-11. Anything that fell below 4.5 was low and anything
higher than 11 was high. Hope that this makes sense. Just get me the results and the reference range and I will help you understand it.

Sorry that you have had this setback but you will be ok. You are not alone in this as this is a common setback . The doctors expect these things to happen and that is why they check your labs so frequently.

You are young and basically healthy (sounds like an oxymoron) but you know what I mean. You can bounce back quickly from these setbacks.


Let us know how your counts are today. Hang in there. It is scary and hard to understand these changes but you will get through this.

God Bless
Linda

Singer 78,

Here is the previous post I sent you on what to expect with chemo.


Three things you want to be aware of while you are going through chemo in regards to your blood work are your White blood cells (WBC's) ,The wbc's determine if you have a bacterial or viral infection. Normally when you have chemo the white cells will decrease and make you suspectible to infection.If your white count goes down to a critical level they will give you Neupogen.
Your red blood cells along with your hemoglobin and hematicrit will sometimes
drop to levels that you will need Procrit. When these levels are low that means you have anemia secondary to chemo or that you may be bleeding.
The last thing that can become low are your platelets. Platelets are crtitical
for your clotting. Some patients will never have any problems with any of these becoming critical. In some cases it is determined by the type of chemo you are getting, your general health, age, etc. My mother had all kinds of
problems with her chemo because of her age and she had chronic kidney failure. My brother who had the same chemo had no problems at all and gained 25 lbs or more. It just depends on the status of the patient prior to getting ill that determines how well they do. Most people who are younger and in your age group do well for the most part. It is always good to know when they say that your blood work is good what they really mean. Just
be aware of your body and if something does not seem right tell your health care provider.

Thank you so much.
I have to go for my blood work & will post more later.
I feel so tired....but, at least I know why.
I'll be in touch.
Hopefully, I'll come back with better news.
:)

Singer 78,
I hope you read the other post on page 6. Good luck to you. You will be fine.

Linda

Hi Linda,
Yes. Thank you for bringing that to my attention, what you'd posted earlier.
I guess I'm no different than everyone else whose blood counts have dropped.
I'm on "vacation" so-to-speak for a week, until chemo next Friday. It's been delayed for me to build up my WBC. I go in next Friday, and then I believe they give me the growth hormone shot, either that day--or on Monday. You know, they throw so much information at you at once, and I always hope my husband will retain it, if I don't. We both get in the car and say "What did he say?" So...I usually end up calling them---but, they're really a class act. They've always answered all of my questions promptly & are all very kind.
This is going to push me through the whole year, having treatment. I had a feeling it was going to be a "long haul." I try NOT to focus on the length, but how good it's going to feel to be well again.
Anyway, thanks for you information, once again. I was petrified last night, because I wasn't as informed as I am today. I'll get back on track. But, really, this is kind of a welcomed break, even though I feel so tired at times, I can't move. The knock-down-dragging-feeling is slowly leaving me---it's not nearly as bad as it was yesterday and the day before.
My husband got out our bicycles and said maybe we'll start riding them. I'm hopeful this week, I'll feel well enough to do that. I've been kind of a prisoner in my house, the last few months--except for a few shopping trips. Although, with a low blood count, I'm sure it's safer staying away from people right now. I need to be smart about all of this...
I'll be in touch.
Hope you and your family are doing well.
How's your brother, by the way?
S.

Hello Singer78,
Did your wbc go up today? I am alittle confused as to why they are going to give you the Neupogen next week when you have your second chemo. I would think they would give it to you now so that your count will be good by next week but I have been out of the loop for over 4 yrs. so protocol changes.
As long as they answer your questions and you feel satisfied then you are good.

No you are not alone in this little set back. Doctors anticipate this happening and are pleasantly surprised if it does not happen.

You will be fatigued because of the chemo by itself. Also mentally it is draining and taxes your energy level. Having a low white count will not make you tired.
If they give you prednisone after your chemo you will have a burst of energy and then a day or two later the fatigue will hit. That is normal.

My brother is doing well. His spirits are good. He is a very brave as I would not be able to be so adjusted. I am not a very good patient . He has a very long road ahead of him. If he survives the massive doses of chemo and radiation and then survive the transplant he will then have up to 3 yrs. that
he has a chance of rejection. After that he can live normally and then pray
he does not get leukemia again. He is a strong guy and just became a grandfather this year. He is only 48. I pray that he will live a long life.

Thank you for asking. Keep going strong.

Bless you
Linda

Hi Linda,
Well, my wbc (although they didn't tell me the number) was "about the same" as the day before. I guess they want my own body to restore the cells--why, I'm not sure. I'm pretty sure I have the "shot" a few days after the chemo. Maybe he thinks it will teach my body to make them on their own?
I don't know.
This whole thing, even though people are assuring me it's normal, is still making me a little panicky...but, then again we have anxiety in our family and it looks like I'm following suit. This whole thing is rather unnerving, and I'm learning some life-long lessons throughout this whole ordeal. Cancer certainly has a way of disrupting lives, doesn't it?
I was going to ask you, after I read one of your posts about your brother---Do you think I should ask my doctor about possibly donating my own stem cells? I'm thinking down the road, if something should arise that's not planned... Do people do that when they're going through chemo, even though their bone marrow (at that time) is not compromised? I don't know the protocol there.
Thank goodness your brother found a donor.
Your brother sounds like a strong guy. Men approach disease differently than women, I think. They kind of plod through it all. I had a nurse tell me today, that an 80 year-old man was finishing up his final chemo. Isn't that fantastic?
She said he was doing great---and then, here I am 3 decades younger...acting like a baby. I just need reminders all the time, that "this too, shall pass."
Anyway, hope you have a nice weekend & get to spend some quality time with your family. Most of my time with family, is on the phone right now--which is fine. I need rest....lots of it.
Take care. Please stay in touch.
S.

Dear S,
Yes they do like you to produce cells on your own and sometimes they want to
see how the body will respond to the effects of the chemo and start making
cells on its own before using Neupogen. They did that with my brother as well.
Besides Neupogen is very costly and 4 yrs. ago it was between 900.00 and 1,200 an injection. Procrit was over a 1,000 up to 1,500. Shocking the cost of medicine. I think asking your physican about donating your own stem cells is a
good idea. I wish that they did that in my brother's case. It is called an
autogolus transplant where you are your own donor. Unfortunately doctors do not think that far ahead and want only to treat the immediate problem. They want to achieve a cure and will worry about the secondary complications when they come up. I believe in preventative measures and to do what is necessary to cover yourself down the road if something comes up. BUT I am not a doctor.
I just know that from 30 years in this field that not every disease is a text book case. I have had too many instances to recount upon to know that always expect the unexpected. My mom had been ill for many months with
nausea, vomiting and stomach problems. The doctor she went to said it is the medication you are on. Given the fact that she had severe renal disease
medications had to be reduced because her kidneys could not metabolize the
medications as well. After about 2 months of listening to this I started doing my own evaluation. I thought my mom might have H. Pylori. I talked it over with a doc I use to work with who was a gastroenterologist and she has NO
that is not consistant with her symptoms. I went and did a lab myself and low and behold that is what she had. I got her the medication and she was fine after about 2 weeks. Of course then all of a sudden everyone knew that
was what it was. That is just one small example of what happens. All I can say is to be informed as best you can. I respect the medical community as a
whole but know that they are human and they do not always have your best interest in mind. I do not think it is intensional but nonetheless it happens.
I also have anxiety so I know what you mean. It is hard to calm yourself when you are scared and unsure of the future events. Talk about your fears and get it out in the open. Join a support group where you can talk with people who are going through or have gone through the same thing. We had
a great support group at our hospital and I am sure that your hospital will have one as well. The patient is going to be your greatest source of information as they have gone through it. Not all patients are accurate in what has been done but you will have to use your own judgement on some things that are said.
Yes cancer has a way of disrupting life that is for sure. I have not gotten over everything that has happened in my family. Then this past Oct. my beloved pet, Pogo my himalayan of 14 yrs. developed breast cancer. He was
a male cat and this is so rare that the vet did not know how to treat it even.
He passed away Nov 20th. Even my poor cat got cancer. I go through phases of
being depressed and anxious. Sometimes it is just too much. Anyway enough
of the pity party. Do ask you doc about donating your own cells. I am sure
that he will say no and that your insurance company will probably not pay for
it anyway. Insurance companies do not like preventative measures. Hope that you will be ready next week to start again and get this over with.

Blessings to you
Linda

Linda,
Just want you to know, I refer to your posts often (re-read them).
You're such a big help to me, as well as my other friends on here.
I seriously don't know what I'd do without you.
I believe in a Higher Power, and I think people are sent to you for whatever reason. This whole journey is so bizarre, but through it all, I'm learning.
I'm so sorry to hear of your cat. I, myself, have an older one that thinks he's a dog. He even begs. I think somehow he got the "spirit" of a dog, instead of a cat. He'll be 15 in August. He spends most of the daytime sleeping. I often look at him, and think, "Boy---I wish I could relax like that!"
Anyway, I've answered a few posts already....just wanted you to know I appreciate your expertise and it's very informative.
I intend to ask my Oncologist some things you've addressed. I did the last visit, too.
I think my husband is even starting to know the names of my "friends" on here--so that goes to show you, you're an important part of my life.
I've remained inside all weekend, since my blood count was low, but I intend to do some shopping before chemo on Friday. I need some things and my husband isn't exactly the "best" at it....even when I give him a list!
Hope all is well on your end...family, in particular.
:)

Hey I have to inject myself with neupogen the day before i have treatment. infact i did it this morning. I had no idea it cost so much! My best friend has diabetes and she told me that she costs the nhs £4000 a week!!! Actually speaking to her and a few of my other friends has made me realise that everyone is going through something as extreme as all of this. She has just been told that she is showing early signs of diabetic blindness which is scary for a 21 year old to be told. loads of people i know have some huge medical thing going on. i was in town today and this guy was collecting money for a cancer charity and he asked me if i 'wanted to help beat cancer' so i told him very loudly that i already am beating cancer and he retorted that if thats the case why wont i give any money! my flatmate dragged me away before i started yelling in the street. why are people so insensitive?! I am still setting up a benefit fundraiser for the maggies center! I was so angry, i still am. I feel i should be walking around with a tshirt that says 'this is what cancer looks like'.

sorry for the rant. just having a rough day.
xxx

Mada,
Wow...I've got to hand it to you, injecting yourself.
My mom was told she might have to learn to give herself shots--and she ran the other way. I suppose it's just like anything else---you do, what cha gotta do to survive. That's really commendable.
I know--I suddenly seem to be surrounded by lots of "ill" people, too, in one way or another. My ENT seemed to think the "Hodgkin's" he's seen recently (on the upswing) is due to the environment. That encompasses a lot of area... I, still, will always believe it had something to do with "mold"--my tumor growing...long story....don't want to bore you.
I'm sorry you're having a bad day. I can certainly empathize with you. I'm on a rollercoaster of emotions, too. I'm reading this book that says, "feel the anger....embrace it....then, let it go." Rise above it. That idiot that treated you like that (about the cancer fundraiser) is completely clueless, as to what he's doing. "What goes around, comes around." Someday, he'll find out...
I'm a true "karmaric path" believer. You reap what you sow, etc....
That's one reason why I'm reading these books---because I'm still not TOTALLY convinced I didn't "help" my cancer along, by my stressful lifestyle.
I need to work on that.
I've also found help in deep-breathing. Inhale to the count of "12" hold for "12" and let out for "12." It doesn't always calm me---but, I'm learning. I did that for almost all those tests they put me through. They can all be very unnerving, can't they?
Hope you're feeling some better.
:)

Dear S.
Thank you for the nice compliment. I hope that I can help in any way. I am here for you anytime. Hopefully you will be on your way for the next treatment.
As you can see by other posts that everyone is different and each doctor has their own protocol. Treatment can vary greatly from country to country as well.
That is funny that your cat thinks he is a dog. My pogo I think thought he was a person. He was my best furry little friend and I miss him so. For my birthday my hubby bought me another himalayan kitten . His name is Madison and he is a flame point. We picked him up 2 wks ago. We love him already. I am an animal lover and always have been. I find it hard to even kill bugs now. If one gets in the house I will pick them up on paper and put them outside. I just can not kill
anything. I feel everything has a purpose in this world.
Hopefully you can get out and enjoy yourself some. If you lived closer I would
come and get you for a girls day out. Good luck this Friday. I am sure your counts will be good. Take care.

God Bless
Linda

Linda,
Hi. I was hoping you'd return my post.
Yes, treatments really DO differ, don't they?
I have a meeting with my radiation doc the 27th. My Oncologist set it up, knowing that I had some reservations, after having talked with you about your brother. I think I told you, he threw some "doctor terms" my way--but, the gist of it all, was "that's" the treatment he's been using to treat his Hodgkin's patients, with good results. I trust him. There's a website I landed on awhile back, that's designed by patients & whom they recommend as great Lymphoma Specialists. He was 1 of 2 recommended in Ohio. So, I know he's got some happy patients out there. Hopefully, I'll be one in the near future.
Yes--I'm a long-time animal lover, too. I grew up on a lot of land, so every critter imaginable became my friend. I had ducks, chickens, rabbits, kitties galore... I love my childhood. Sometimes, when I do "imagery" and want to calm myself, I go "back" to the lovely back yard we had---lots of sunshine & flowers. My mom & dad made it lovely for our family.
Awww... a "girl's night out" would certainly be welcomed, but not yet. I'm still guarding my low WBC. This morning I awakened kind of panicky, because I thought something was wrong. I was very fatigued for about an hour, and then it WENT AWAY! I felt stupid, because I got on the forum & posted a new post...by the time I got dressed & took a Tylenol, I was SO much better. I guess I jumped the gun a little. That's one thing I've noticed--symptoms come & go. I prefer them to "go," of course.
Yes, I do come here often for the support, because all you ladies have been absolutely wonderful for me. Like family....:)

Hello S.
Thought I would pop back on before watching a movie. That is good that you will be talking to the radiation doc. Questions you should ask are:
Long range effects, alternate treatment options if you decide you do not want radiation, What would your cure rate be if you opted not to do radiation,
what is the cure rate if you do, what type ,if any, secondary cancers would you have to be concerned about. What are the side effects? Short term and long term. If the disease came back would you still have the same course of
treatment. How many lines of treatment can you have if a cure is not obtained?
Are there any other types of options available that do not include radiation?
Is the follow up care the same if I do not have radiation? If I can think of any other questions I will post before your visit.

You sound like you had a great childhood too. I loved my life growing up and my mother was such a wonderful Mom. Always made our home comfortable and alot of love was given.
She watched my daughter the first 4 yrs of her life while I worked and it was a real blessing.

You will be more aware of how you are feeling and that is ok. If it is something that passes then that is good. But if not you can get it taken care of. Fatigue is the number one complaint for anyone who is going through chemo. You will be able to gauge being tired from being so tired you can not
keep you eyes open.

You are very brave in my book and have a wonderful open attitude. Good luck on your appts.

Hugs
Linda

Hi Linda,
Once again, thanks. You have armed me with some very important points to address. I must admit, not only is this chemo-thing unnerving, but now, the radiation-thing is certainly adding to it. I think I told you, my Oncologist said that we only "target" those very small areas (3) with a minute amount of radiation. Still, what is going on with your brother, has me being very leery, about the stem cells. We (my husband and I) have an insurance company that is going to need to be "pushed" into paying certain things....and, I'm almost positive they wouldn't pay for anything "preventive." Isn't that a shame? I wish our world were different. Preventive medicine 'should' be practiced---I think it's the Drug Companies that are raking us over the coals....I know....everyone, except for those corporate people, are benefiting ---$$$$$... It's just not fair.
You really don't seem to be an advocate of radiation, are you? Have you seen any instances in your work, where it 'did' work? I know they have to eradicate any lurking cells left behind--and that's the reason for it. I'll find out more next week, I hope---but, thanks so much for your input. I'm going in with my proverbial "list" of questions via/this internet.
I'm not so sure I'm as brave as my posts seem to allow you to think I am. I have my moments, where if I didn't have my med's to calm me---I think I'd go "through the roof." I usually get out my wonderful reading material about cancer & positive thinking, and it helps. I'm so dreading the next round of chemo, since I'm still reeling from the first...but, if it means a good, quality life, free of disease, than so be it!
Speaking if positivism and negativity, I feel bad--but, I had to stop my negative mom today in her tracks (on the phone). I realize, now, that all my life, I've cheered 'her' up. Now, the tables are turned, although she's elderly and has problems of her own--but, I had to tell her to "think as if your glass is half FULL, not half EMPTY." She kind of laughed, but I think I got my point across. I don't need these negative people around me, and slowly I'm weaning myself (except for Mom, of course) away from them. They've been toxic to me, and it wasn't until now, that I realize how bad they've been for me....for years!
I'm winding down...only 2 more days until treatment, or I might get that shot that increases your WBC, before they do it. Whatever....I'm ready to fight!
Thanks, as always for your response.
You're such a dear to take so much time responding to me.
:)

Just popping in to say "Hi"

Ails xx

Thank goodness, Ails.
When I don't hear from you, or Fairy-lights, I get worried.
Glad you're o.k.
I'm still "frothing at the mouth" with questions & concerns.
As you can tell, Linda on this post, has helped raise some important concerns for me to address, specifically about radiation.
I'm staying off other websites for now---I learned my lesson. I was told that quite some time ago, but I didn't listen. So for now, it's this forum, & ho-hum type sites! :)

Hello Singer,
I am by no means an expert on radiation. I worked with the chemotherapy part and the radiation oncologist was down stairs from us so I am not that experienced with it. They do use low dose radiation in some cases and they
protect the other parts of the body not needing radiation. I do not want to give you more to worry about. I just got cautious when my brother came down with
leukemia. He had radiation on his abdomen only. They told him he would be
more suspectible to cancer of the prostrate and colon. They never even mentioned leukemia and to tell you the truth I did not even consider it either as the oncologist I worked with said it would be very unlikely for him to get another cancer and it was worth the risk. That is what we went on. Maybe you should
ask the radiation oncologist what percentage of patients that they do come down with a secondary cancer. They track patients for 5 yrs. in most hospitals
and send out a form letter to the physician office asking what the status of the
patient is and if they are dealing with any other cancers, out of remission or have expired. This is a form letter and is sent on all cancer patients.

During my time at the cancer center we did not have one patient with Hodgkins disease that did not do well and all that I know of had a complete
remission and cure. I was with them almost 5 yrs. My brother is the only one I know of that got leukemia from his treatment. Maybe he was predisposed I do not know but lymphoma and leukemia are in the same family. This is not
Hodgkins but non-hodgkins lymphoma. These two diseases are alike in some
ways but yet totally different. You have what is very curable and has a very
high percentage rate to be cured. NHL has a much lower rate of cure. It just
depends on what type of lymphoma it is and if you have HIV or AIDS you do
not have a good outcome only because your immune system is compromised
from HIV or AIDS and leaves you open for complications. We had one young
girl who worked in the hospital that had HIV and then came down with NHL
and she passed away from complications related to the HIV. She was only
in her 20's and it was very sad for all of us at the hospital.

I can only imagine how you must be feeling and worried. I can only assure you that if you were going to get cancer then you got the one that is most
treatable and has one of the highest cure rates.

I would ask the radiation oncologist about donating your own stem cells just
to see what he says. I am sure that he will poopoo it. Most docs do not
think that far ahead. Stem cell transplantation is used with all types of cancers now including even breast cancer. Thanks to our great president (NOT) that keeps vetoing the bill to pass funds to go to stem cell research.
I guess if he had a child that needed one to save their life he might reconsider. Yes insurance companies are terrible and I have had to fight over the years to get our patients the treatment the deserved to get. They just
do not want to pay. I am very surprised my brother got approved for the
stem cell transplant as many ins. co. still think it is experimental. Go figure.

Yes the one thing you do not need is someone who will bring you down. Surround yourself with happy positive people. Laugh as much as you can.
You know what they say, laughter is the best medicine. I am sure that your
Mom is very worried about you. Sometimes it is hard for parents to see their
children , even though they are grown go through something like this. My Dad
sometimes makes me crazy when he talks to me about my brother. He will say things like he sure is in a bad mood today. I wonder what he is mad about. I think DUH, he has cancer. That is reason to be in a bad mood .

Just think that every chemo round you have gets to closer to your cure and your renewed health. Try and put yourself in your favorite spot while you are
going through your chemo and envision yourself feeling good and in the very
best health. That is where you will be. Positive affirmations. Use post-its all over the place that says I am going to be healthy again, I will beat this,
I am going to have a big party the day they tell me I am cured.

Good luck on Friday. I am sure you will be fine. Let me know how it went.

Hugs to you
Linda

Radiotherapy for Hodgkin lymphoma

Radiotherapy treats cancer by using high-energy rays which destroy the cancer cells, while doing as little harm as possible to normal cells.

Radiotherapy only treats the area of the body it is aimed at and so may be used when the lymphoma cells are contained in one or two areas of lymph nodes in the same part of the body (stages 1 or 2). It may be given in addition to chemotherapy.

The treatment is given in the hospital radiotherapy department, usually as daily sessions from Monday to Friday, with a rest at the weekend. The length of your treatment will depend on the type and stage of the lymphoma, but is normally about four weeks.

* Planning your treatment
* Treatment sessions
* Side effects

Planning your treatment

To make sure the radiotherapy is as effective as possible, it has to be carefully planned.

On your first visit to the radiotherapy department you will be asked to lie under a large machine called a simulator, which takes x-rays of the area to be treated. Sometimes a CT scanner is used for the same purpose. Treatment planning is a very important part of radiotherapy and may take a few visits. The treatment is planned by a doctor: a clinical oncologist.

The radiographer, who gives you your treatment, will draw marks on your skin to help position you accurately and show where the rays are to be directed. These marks must stay visible throughout your treatment. However, they can be washed off once your treatment is over. Some people may have tiny, permanent marks (tattoos) made: these will only be done with your permission. At the beginning of your treatment you will be given instructions on how to look after your skin in the area being treated.

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Treatment sessions

Before each session of radiotherapy the radiographer will position you carefully on the couch and make sure that you are comfortable. During your treatment, which only takes a few minutes, you will be left alone in the room but you will be able to talk to the radiographer who will watch you from the next room. Radiotherapy is not painful but you have to lie still for a few minutes while your treatment is being given.

A radiographer watches on a monitor while treatment is given
A radiographer watches on a monitor while treatment is given

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Side effects

A course of radiotherapy will nearly always cause tiredness. Other side effects you have will depend on the part of your body being treated. Any treatment to the abdomen can cause stomach upsets such as feeling sick (nausea), vomiting or diarrhoea. Treatment to the head can cause hair loss. Radiotherapy to the neck can make your mouth, or throat, sore. You may also notice that some foods taste different from normal. These side effects can be mild or more troublesome, depending on the length of your treatment.

Your radiotherapist will be able to advise you what to expect. They can prescribe medicines to help with side effects such as sickness or diarrhoea. Our section on eating problems has helpful tips on coping with eating problems caused by treatment. Your radiotherapist will be able to advise you what to expect. We also have information about coping with specific side effects, such as a dry mouth.

Radiotherapy can have long-term (permanent) side effects. These are rare and again, will vary depending on the part of the body treated. You can ask your specialist if you are concerned about long-term side effects.
Tiredness

As radiotherapy can make you tired, you should try to get as much rest as you can, especially if you have to travel a long way for treatment each day. Fatigue syndrome is a term often used to describe the tiredness that can occur during and after treatment. It generally begins in the latter half of treatment and can continue for several months or even years after treatment has finished. Balancing rest and activity throughout the day is important as your body needs rest to recover from the treatment.
Feeling sick (nausea)

Nausea can usually be effectively treated by anti-emetics (anti-sickness drugs), which your doctor can prescribe. If you don't feel like eating, you can replace meals with nutritious high-calorie drinks which are available from most chemists. We have information on managing nausea and vomiting.
Hair loss

Although radiotherapy can cause hair loss, this only occurs in the area being treated. For example, if you have radiotherapy to the lymph nodes in your neck, you may lose the hair on the back of the neck. Radiotherapy to the nodes in the chest may make the hair on your chest fall out.

When you have finished the course of treatment, your hair will usually grow back. It normally takes between six and twelve months, depending on the dose of radiotherapy and the length of treatment.

All these side effects will disappear gradually once your course of treatment is over. Let your doctor know if they continue.

Radiotherapy does not make you radioactive and it is perfectly safe for you to be with other people, including children, throughout your treatment.

Our section on radiotherapy discusses this treatment in more detail.


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Content last reviewed: 01 September 2006

MAN OH MAN>!
Do I have some reading, or what??????
You are so informative, I'm in awe.
I'm taking a much-needed bath (my relaxing time) and I plan on thoroughly reading this---probably printing it out, too.
I can't believe the generosity of info from you wonderful people.
I swear, it's solidified my faith in "mankind" -- in this case "womankind."
I'll be in touch.
I have to make "hay while the sun shines" because tomorrow (hopefully) is my chemo and I need to go shopping---my husband went shopping, but you gals know---no one does it like you can.
I'll be in touch.
Linda--I owe you one. You're an angel. :angel:
love, S.

Good luck tomorrow, Chick

Ails xx

Thank you.
:) :) :) :) :)

Dear S/.
Good luck tomorrow on your chemo. Ask about healing touch at the center you are going.to. We had nurses and nuns trained in the art of healing touch and it was very beneficial to our patients. It puts you in a very relaxed state and it is
very spiritual in its effects. My big 300 lb. brother had it on every visit and he
just thought that it helped him so much. Maybe that is why he never had any
problems with his chemo. Positive thinking and feeling that a higher power was working on his behalf. Anyway most hospitals have some kind of spiritual service they provide for patients. They may call it something else but it is all the same I am sure. I worked for a christian hospital Holy Cross so we had nuns that worked along with us.

Enjoy your bath and I know what you mean about shopping. I send my sweetie to go and pick up 2 or 3 things and he is gone for hours. He thinks he has to buy exactly what I have on the list and will spend an hour looking for something that i did not even write the name down correctly. Men are
so funny about those things.

I am glad that you find comfort here and that I am a small part of that.

Have a nice evening and think positive things for tomorrow. YOU WILL BE
CURED>

hugs to you
Linda

Thanks, as always, Linda.
I'll ask tomorrow (actually today) about any spiritual services. I can never have too many of those sessions---basically, I've been having my own every morning with my books & the sunshine. It's been really beautiful every morning, and that helps immensely. I have to ask my nurses tomorrow if I should stay away from caffeine. I think I probably should, on chemo days, because of the dehydrating effect it has on your system. I just read where I should drink 8 ounces of water, every hour, until bedtime after chemo. Boy--that's a lot of visits to the bathroom. Have you heard that? I got it from a breast cancer site.
I actually went out Thursday and succeeded in getting everything done I had to do! I couldn't believe it! I actually felt like "part of the living" again. I stayed "holed-up" all week, due to my low WBC, but I called the nurse earlier yesterday, and she told me to "Go for it!" I felt great---got all my "ducks in a row" so I won't have to go out over the weekend. Anyway, I forgot what it was like to just putz around.. :rolleyes:.... I hope this round of chemo is a little easier---especially since I know more what to expect and I'm armed with the proper med's. I've started to lose my hair. It's still there---but, this next round of chemo, will most likely do a number on me. I've got my hats and a pretty convincing wig---I still don't know how I'll feel, if I'm completely bald. I'm not a fan of the "punk" look--- but, it's comforting to know it will grow back eventually.
I'll be in touch.
Hopefully all will go well. I can't believe this week went by so fast!
TGIF to everyone !!! --Happy Summer, too.
Love, S.

Singer--
good luck today!! Knock em dead! (No pun intended) ;)

LOL! That's an appropriate phrase, isn't it???
:)

Good morning Singer,
Good luck today. You need to drink water during your chemo. It will help your
bladder and prevent a urinary tract infection. The bladder will become irritated
from the chemo and the water will help. Caffeine does dehydrate so for every
cup of coffee you need 2 glasses of water. It is easier just not to have it unless
you get caffeine withdrawal.

I forgot about losing your hair. Some chemo you will not. My Mom did and I shaved her head before it all fell out. She was beautiful without hair. We made
a day going wig shopping and had a ball and alot of laughs about it. When it grew back it was fuller and curly. That happens alot. Alot of people who lose
their hair get better hair when it grows back in. Plus you do not have to shave
your pits and legs either. That is a real bonus.

I am glad that you had fun shopping. When you feel good go for it. Light exercise is beneficial too. Go for evening walks even if it is a block. It makes
you feel that you are part of the world.

Let us know how it went today. If you have a setback just remember that
this to will pass. Brush yourself off and know that in the end it will all work
out.

Hugs
Linda

Thank you all for your kind, encouraging words.
I'm trying to eat a high-fiber light diet right now, since I have chemo (I think) in a few hours. I'm slowly starting to get the hang of it--this chemo stuff.
Yes, I plan on taking some bottled water with me. One thing that amazes me, is that doctors do not incorporate much info on diet, etc... My Oncologist expressed just "eating lots of calories," but, now that I think about it, he didn't say anything about drinking lots of water. Maybe that's just a "given" and they assume you know to do that. I know my elderly mother will NOT drink enough water, because she says it makes her urinate too much. I said, "What's wrong with that???" She has arthritis, so it's probably just more difficult for her to get to the bathroom.
I need to get going. I'm anxious again---I guess it's just because of my low white blood count I had last week. I think I still need that shot (Neulasta?) on Monday, unless I've miraculously tripled my WBC on my own....it could happen, right?
I'll be in touch.
I love you all for caring.
:)

Thank you all for your kind, encouraging words.
I'm trying to eat a high-fiber light diet right now, since I have chemo (I think) in a few hours. I'm slowly starting to get the hang of it--this chemo stuff.
Yes, I plan on taking some bottled water with me. One thing that amazes me, is that doctors do not incorporate much info on diet, etc... My Oncologist expressed just "eating lots of calories," but, now that I think about it, he didn't say anything about drinking lots of water. Maybe that's just a "given" and they assume you know to do that. I know my elderly mother will NOT drink enough water, because she says it makes her urinate too much. I said, "What's wrong with that???" She has arthritis, so it's probably just more difficult for her to get to the bathroom.
I need to get going. I'm anxious again---I guess it's just because of my low white blood count I had last week. I think I still need that shot (Neulasta?) on Monday, unless I've miraculously tripled my WBC on my own....it could happen, right?
I'll be in touch.
I love you all for caring.
:)

Hi Singer

How'd yesterday go?

Ails xx

Hi Ails (& my other peeps)
This is the first time I could look at the computer. I had a headache yesterday. It was a borderline migraine. It started during chemo. Even though they give me anti-nausea med's, and I was drinking gingerale & eating crackers, it still managed to get to me some. I have always had a bad time, too, with flourescent lighting---so, next time I think I'll either wear sunglasses or a hat to shield my eyes. It's really everything combined, I would imagine. Plus, I don't think I should try to read, when treatment it being administered. I think I'll just relax, watch their t.v., and visit with people.
I was told to "double up" on my laxative med's---Whoa Nelly---they worked. Unfortunately, a little too well. Maybe tonight I'll cut back a little... I still would rather have diararhea everyday, as opposed to being "backed-up."
So far, so good, except for the headache (which is gone) and the stomach thing. I think the ole' herpes are trying to attack my tongue---that will probably come later, unless my med's are working there, too.
TMI (too much info...sorry...) But, you know it is really therapeutic for me to write this down. It's like I "get rid of it" by typing it---helps me heal. In the meantime, I'm boring you all silly with my laxative stories! :dizzy:
I even ATE this morning! They sent me home with anti-nausea drugs & told me to drink LOTS & LOTS of water. So, I just ate something my lovely husband brought me from a local restaurant---Sausage gravy on biscuits!!!
Holy gravy, was it good. I haven't allowed myself to eat like that for years & years. OH...I gained about 4 pounds...which is great! I was looking a little gaunt. I think the ice cream is fattening me up, just enough to handle chemo.
I have my Neulasta shot on Monday. My Team is not in today, otherwise I'd get the shot. I'm told it's not the most pleasant shot to receive, but I need it, otherwise the ole' WBC starts slip-sliding away. --don't want that to happen again. They said I'll probably need a shot after every treatment. oh well...could be worse---could ALWAY be worse.
Anyway, thanks for asking. I hope your weekend is nice & warm & you enjoy every minute of it. I'm enjoying putzing around on my patio. I finally broke down and bought some hanging plants---just 2. I think they're begonias, and they really add. I enjoy meditating outside--although my noisy neighbors don't help, from time to time.
So, this chemo stuff is basically a learning experience, as to what med's to take & what NOT to do, just to maintain some sanity in your life. I'm learning. It's becoming a little easier, but I still have a long haul. I'm adjusting better & realizing this "isn't the end of the world," finally---not that I ever REAlly thought that---I guess I was scared. Sometimes, we make things bigger than they really are.
Talk to you later...
:)

You sound really positive - atta girl!!!!

You're having 8 treaments, right? That means you're quarter of the way through your treament already!!

Ails xx

Yes, 8, followed by 1 month off/then radiation/20 treatments.
My Oncologist if being thorough, from what I hear.
And yes, my positivism came back.
Did you have trouble with the Neulasta (growth hormone shots)?
I heard they sting and cause joint discomfort for a few days. Now, it looks like that might be a steady regimen for me. My WBC really took a dive there--but, I managed to bring it back up on my own. They don't want to delay treatment, so that's why I have to incorporate the shot, I suppose. :confused:
How're you doing? Any sore muscles? I was looking at my arms---they've lost all tone. Even though there's no fat, there's this "hanging" skin there (the kind that flaps in the air when you wave :wave:) that was usually tight and toned. I'll get it back, though--- I'm just now starting to stretch a little more than I was. My surgeries kept me kind of "tight," but I'll coming around. I took ballet years ago, so I remember those stretches well....helps keep me limber. I feel like I've been in battle---sore everywhere. Chemo's a real a** kicker, isn't it?
:) :) :)

Lost tone in the arms? More commonly know as bingo wings :D - don't worry the muscles have good memory and you'll get the tone back in no time

The only time I had the shots to get my counts up was when I as in hospital with neutropenia so couldn't tell you what pain was from being neutropenic, what was from the shots and what was from being in bed all day!! Sorry !! If it's any consolation I didn't feel that bad and the actual shot itself wasn't as bad as people made out!!

Ails xx

How long were you in the hospital?
How long did it take your count to come back?--Do you remember?
I guess I brought my count up on my own---but, they want me to stay on schedule & not take that extra 3rd week off. me too.... let's get-on-with-it!
What time of year were you treated?
I'm so glad we're experiencing summer right now--although, today it's almost cool. I like those hot, hot days where I feel like I can sweat out toxins.
I'm not sure....does England and USA share the same seasons at the same time?
I should G***** on the internet---I'm too lazy today. I know I hear of many rainy days in England. I've never been there---but, I'd like to go.
Are you familiar with Chrissie Hynde from the group, The Pretenders? She's from around this area ---I think she married whatever his name is, from The Kinks. I think they're divorced, though..
S.

Dear Singer,
Just a quick note to say I am glad that you could get your treatment. You are on your way. Neupogen will normally only cause bone and joint pain specifically
in the shoulder area. Some people have pain and some do not. You sound very
uplifted and that is good. Neulasta and Neupogen are the same thing so I do not mean to confuse the issue.

Have a nice week-end. We had a community yard sale today and I am bushed.
Took us 10 hours to set up everything. We did good as I sold most of the
artwork I had stored in the attic but that is enough of yard sales until next yr.

Hugs
Linda

Linda,
Oh NO...
I've been plagued with shoulder pain, since early May from my incision & it's just starting to subside. Now, with the shot---it might come back, I guess. At least I know it will be fleeting.
Yard sales are a lot of work! I used to have them, but quit after it became so exhausting. I'd rather donate to charity---but, paintings are different. They become like your "kids," and you want them to have a good home, I'm sure.
I was feeling better earlier today. These symptoms still amaze me, how they come & go. I just have to make sure I'm timely with my med's.
Nice to hear from you...
:)

Hopefully you will not have any pain but if you do you will at least know where
it is coming from.. It usually only will last a day or two. My brother never had
any pain and my mom did. Glad that you are coping.

We donated 15 large trash bags of clothes from the days when I had a dressy
style. Now I wear jeans and shorts most of the time. I do not know how I
amassed all these clothes when I use to wear a uniform. Anyway someone will get to enjoy them.

Have a great day.

Linda

Hi Linda--(& others)
I'm coping, but not exactly a "happy camper." My stomach acted up earlier, so I've been taking the proper med's to calm it---also a little nausea involved. I'm eating, though--not exactly the best thing for you-- coffee & donuts! I haven't had that in years (donut part). My Oncologist told me just to "eat"--so, that's what I'm doing. I'm trying to drink water, too, but when you're nauseous, it's kind of hard. I'm thinking day "1 & 2 & 3" after chemo, are going to be my hardest days from now on, through the end--maybe not. :confused: I wish I could establish some sort of pattern.
My fashion has changed, too, through the years. Especially now--all I want is comfort. I've toned down everything---I used to wear more makeup, but now it's the bare necessity to just look "normal." My hair is really thinning---I feel like one of those birds that pluck themselves too much! This is really a weird kind of journey, this chemo stuff. I suppose I'm just having a down-day---that's to be expected.
I have to stop typing, because I think eye focus has a lot to do with becoming nausea---so, I'll be back later.
I just need to putz around and do some menial stuff around the house..... & enjoy the warm weather.
Have a nice Sunday. :)

Hi Singer,
Sorry you are having problems with your stomach. If coffee and donuts sound good to you eat them. You have to eat what appeals to you. If you still have
a problem ask for Merinol. It will increase you appetite that is for sure. It is made from a derivitive of the marajuana plant. I guess that is why my brother
liked it so much. It does work and helps with the nausea and of course it increases your appetite. Soda crackers or just plain crackers are good for the
nausea and wash them down with your water. Organic foods are much better but if you do not want to pay the extra just try and stay away from processed
foods and foods that have alot of sodium. Unfortunately the pattern sometimes is that you have no pattern. Know what I mean? You can expect to have
fatigue and nausea but it may not always be as severe. You may feel depressed after your treatment as well. Some chemo affects your hormones that can
alter your moods and so on. Those darn hormones are a real problem .

Since I retired and moved here to Va. I have stopped wearing makeup except
for lipstick and blush. I do not even feel comfortable wearing mascara or eyeliner anymore as it has been 4yrs. I like the natural look and comfy clothes and have given away all my dresses, skirts and party clothes. I have
not worn high heels in 4yrs. and would probably trip over myself.

Hope you had a nice day outside. Coming from Fla. I am so over hot weather that I prefer the cool weather and am already looking forward to fall.

Hugs
Linda

Dear Singer
Hope that you are feeling better.


Linda

Hi Linda,
I'm having a pretty rough time. I was actually better before they gave me that shot---I believe Neulasta & Procrit (?)... I had 2, one for the RBC & one for the WBC. Anyway, it's made me feel achey & flu-like since yesterday....also a little queasy. I just got up....I'd actually rather stay in bed, but even at that, it's rough.
I guess to describe it, I feel like I have a bad flu. I've been on a light diet--clear liquids & broths. Maybe I'll come around throughout the day. I hope so. I had a feeling I wasn't going to be one of those people that just "floats" through treatment. I've always been sensitive to med's and what-not...
I'm just taking it an hour at a time.
Do you think this means I'll have to have those shots EVERY time? Oh goodness. I was told to expect 'some' pain... and they were certainly right.
I took almost the maximum Tylenol yesterday (8) because I just can't seem to handle any other type of pain killer. The ole' tummy doesn't cooperate.
Sorry to complain. I was just hoping I'd "snap out of it," --but, this is a slow turn-around.
I see my Radiologist tomorrow, hopefully armed with questions. I know this will pass, but NOT soon enough.
I intend to ask about that med that your brother was on, too, for appetite. Anything to make me feel better, I'll inquire about.
Thanks.
S.

Dear Singer,
I am sorry that you are having a bad reaction from the Neulasta. Unfortunately
that is the side effect that is the most common. Bone pain and flu like feeling.
It is only suppose to last 2-3 days but it can go longer coupled with the fact
that you had chemo as well. The procrit usually does not have too many side
effects. I am like you. I do not react well to medication. You might want to
ask for Ultram. The generic is called Toradol. It is a pain medication that has
an opiate effect but does not have an opiate in it. It works very well in reducing pain but you do not have the narcotic effect that makes you feel funny. You might want to try it.

I know that you want to stay in bed and rest but you do need to get up and
walk around some during the day. You need to circulate the blood flow in your
legs especially. I do not know how much information you want to know so I am
leary in telling you what you need to be aware of. Somethings never come up
but if they do you need to know when to alert the physician. Let me know how much you want to hear.

They usually only give you the injection if you need them or if they think you will become neutropenic or get pancytopenia which means that your red blood
cells , your white blood cells and your platelets will decrease to a critical level. Neutropenia means that your white blood cells are low. Every doctor
is different in their approach to treatment. I worked with a oncologist who was the top leader in the usa in treating non hodgkins and he developed using
Rituxin one day before chemo to target the cancer cells. His approach was
very aggressive in treatment. He also did alot of F/U studies. My mom's
oncologist was not as aggressive. Each patient is approached on an indiviual
basis according to age, type of disease, stage of disease, prior health, etc.
That is why is it not advisable at times to talk with patients that have gone
through a similar experience and judge your treatment according totheirs.
I have heard some stories that patients relate to one another and they are
so inaccurate that it is alarming. That is why I am guarded on information that
you may or may not want to hear. I was my mom's caregiver so I had to be
aware of any complications and be her advocate. I was amazed at the lack
of knowledge her primary care doctor was aware of. He knew she had NHL
and was on chemo but yet when he would do her labs he would be so alarmed at her blood counts and would be constantly telling her to go to the hospital
immediately for a blood transfusion. Of course her levels were low but not to the point that she needed a transfusion. They will only transfuse when the
Hgb is 7 and under. These are things that are common for an oncologist but
a general practice physician would not know what to make of it.

I am sorry if I am giving you too much. I hope that you feel better today.


Hugs to you
Linda

Linda,
Thank you for being so thorough with me.
I'm kind of staying away from the computer right now, because my eyes have a way of messing with me & making me nauseous. ..so, I'll keep this short for now.
I'm doing a pretty good job of reporting to my Oncologist. I really don't think there's a "quick fix" through this journey, but I'm learning to cope a little better as time goes on.
I know there's tons of risks involved with any disease---please don't ever be afraid of 'scaring' me---I know knowledge is power, and I certainly want to know if there's any kind of adverse reactions. I just didn't plan on being so dog-goned "whacked out," ---for lack of a better phrase.
My husband said he sees a bit of a pattern with me. He said basically the first week after chemo, I'm a bit down---then, I come back around. I don't suppose that's much different than anyone, really.
I'm making myself do stretches & yoga & light exercise. Holy Moly---it's as if I weigh a thousand pounds---but, I DO notice, afterward, I feel much better.
At least I can drink water today. Yesterday, I was lucky if I could even handle little sips of gingerale.
You probably think I'm a "light-weight." I see so many people on here with such fortitude and strength, and they give me courage. I'm slowly coming back around---I'm certainly not going to let that ole' %$$#:eek: break my spirit !!!!!!!
I'll write more later.
I sent my husband for take-out. I need calories!!!!
(chicken alfredo, to be exact---doesn't that sound good???)
:)

Dear Singer you are anything but a light weight. I think you are very brave even though you do not. You to have fortitude and strength. It is just hard to see that in yourself.

Dinner sounds good. Enjoy.

Hugs
Linda

Yum - enjoy

Just checking in!!

Ails xx

It was scrumptious! It's funny...but, the foods I would NEVER allow myself, when I was well, I'm craving. It there's a good side of the "coin," that's it!
Hi Ails...We haven't talked for awhile----as you can see, I'm hanging in there.
I'm not a fan of those shots I had to have. Does anyone here know of any medication to negate all those side effects? I think Linda mentioned Toradol...I may ask for that. I've tried everything & I still ache.
It's the aching back & shoulder that's driving me nuts! It is subsiding some, though---not soon enough!
What's for dessert????
:)

Linda (& others)
I seem to be having a very rough day. I didn't feel this feeling before with the last chemo, so I'm assuming it's from the Neulasta. I have almost 'unbearable' back pain. I have anti-anxiety med's, which seem to help me cope some.... I thought I was doing so well, and now that these shot(s) are added to the mix, I'm not so sure.
Will they continue to react like this every time, assuming I need them every time? Oh goodness....I've been completely wiped-out all day. Nobody said this was going to be easy---I guess I just need some encouragement.
I always feel like a big baby---sorry if I come across that way.
Anyone?
Thanks.
S.

Dear Singer,
Just came online and saw your message. So sorry that you are having this
pain. You may want to talk with the doctor about this. Bone pain and
muscle aches are considered common but the length of time you are having pain may not be. Do you have any abdominal pain or pain in your side or shoulder pain ? Report this to the doc if you do. Neulasta increases wbc's and these cells can increase to a high level . They are immature cells that are stored in the spleen and then become mature and turn into white blood cells, red,
and platelets. If you are seeing the doctor tomorrow tell him your symptoms and your concerns. I am so sad that you are having a problem . I hope that you start to feel better soon. If you are having back pain are you having any other symptoms like burning when you urinate? You could have a urinary tract
infection from the chemo or a kidney infection as well. Hope that you get some
answers. When did you last get your blood drawn? You should have gotten it
done this week to see how high your white cell's are? Let me know. I will
check the computer on and off tomorrow.

Hugs to you
:Linda

Hi,
Yes, something doesn't seem right.
I'm surprised I slept as well as I did.
I had the shots on Monday---had chemo last Friday (one week ago). They don't give the shots on the weekend, so I got it early Monday...and from that point all "you-know-what" broke loose. Actually, yesterday (Thurs.) was my worst day. It started off with pain throughout my whole upper chest --kind of radiating throughout my lungs, somewhat---but, later, when it "hit" my lower back, it made it difficult to mov