I don't even know what to say because I'm totally in shock. I lost weight and was extremely tired and was sweating at night. Then I felt a lump on my collar bone and then one in my armpit. I went to my primary and she sent me to an oncologist.

I had a CT scan done and the tumors were removed and the result is I have NHL.

Next step, I think, is a bone marrow biopsy to see if I have bone marrow involvement.

I'm here for support and I have a bazillion questions. I've been reading for a while but just got the results yesterday. But right now I'm a bit overwhelmed and very dazed and confused. :eek:

Kayla

Hi.
I feel compelled to write you first, because I was where you were a little over a month ago. It's certainly a whirlwind of emotions & scary, but with support around you physically, and support of this forum emotionally---you'll get the answers you're seeking.
Firstly, I'm sorry for your diagnosis. Today's Health Care System has come leaps & bounds concerning this disease. There's many supportive people on here that are in remission or cured. That's what I "hung on to" from the get-go, and I'm still repeating those words over & over to myself (being cured).
I'm stage 2A Hodgkin's and have only had 2 treatments so far. One thing I've found advantageous, is to follow your doctor's orders---especially if you have one you like and trust. I had my 2nd treatment yesterday, and although it's not fun, I know it's destroying any bad cells that were trying to invade my body.
I had someone on here (I believe Amanda--you'll learn names) tell me, from the beginning, to take "baby steps." That was good advice. Sometimes "one day at a time," becomes "one minute at a time."
Anyway---reach out to these wonderful people on this forum. I've found there's always someone out there with an answer for you. This disease can be beat! And yes, the other thing is positivism. There's definitely a brain/body connection. When you're informed and ready & positive, you can do just about anything.
Best of luck to you.
:)

Welcome to the board, Kayla. I wish you did not have to be here but hopefully we will be able to support you. There are so many different types of NHL, the first step is to know what type you have. I guess once you have had the bone marrow biopsy, you will know more about the treatment plan. Whatever it is, it is doable. I know you are in shock right now and it will take some time to come to terms with it but hopefully, in a few months, you can put this all behind you.

I was dx almost exactly a year ago with Stage 1V Grade 1 follicular lymphoma, which is treatable but incurable. I had no symptoms and my enlarged lymph nodes in the mesentery only showed up when I had a scan for something else! Otherwise, I would not have known I had lymphoma. I had six months of chemo/antibody and I now feel perfect! I will have to have regular scans as they tell me it will definitely come back but not today!! And that is all I live for...today!

Come back with any questions you have and we will try to help.

Love,

Thanks for the replies. Right now I can't even think what to ask. There's just so many things going on in my brain. I never thought of cancer, I thought maybe I had mono or something.

My doctor said he's waiting for the results of more tests and then we'll take it from there. Does the bone marrow show what kind or the other tests he's waiting for? As you can see I'm totally clueless. :confused: And does the bone marrow test hurt? I hate needles. :eek:

One thing I noticed is you're both so positive and upbeat. I've heard horror stories about chemo and I'm dreading it and losing my hair.

It seems like this is a great group of people and I hope I can fit in here. You'll be tired of me soon. :D

Kayla

Firstly, we will not get tired of you! Your present feelings of confusion are quite normal. The bone marrow biopsy will indicate what stage you are. With NHL, staging is not as meaningful as with other cancers, in that to be Stage 1V is not as scary as with others.

I had my bone marrow biopsy done under anesthetic but have heard it can be uncomfortable, but some find it very easy. The point is that it is over quickly so whatever discomfort you may experience is short lived.

The tumours you had removed should tell you what type of NHL you have and that will determine what chemotherapy will be given. Will you have radiation too?..some do, some don't. The type of chemo you get will also determine whether you lose your hair or not. Mine did not, but many do. However, there again, it will grow back. It is a temporary inconvenience needed to beat an illness. The chemo can be tiring and you will have to be careful to keep away from people with colds and flu. But it does not take too long to feel better after treatment is finished. Even between treatments, you will probably find you have days when you feel pretty good! Everyone is different...some have hardly any side effects at all and find their lives do not change drastically.

Do not hesitate to come back to the board but also remember to ask your medical team any questions that you need answered. It is good to be as much in control of your illness as possible and being knowledgeable is empowering.

Take care,

Hi Kayla,
I'm so sorry for your dx. I'm just on my way out but thought I'd give you a little reply. I have stage 3 Hodgkins and I'm on my last cycle of chemo, the people on this board have been absolutely amazing and i swear i would not be dealing with this as well as i have if it wasn't for everyone on here!

The bone marrow is uncomfortable and a strange feeling but it didnt hurt. I had a friend in with me and it was over in no time. It was like a lot of weird pressure in the bottom of my back. You might not lose your hair, it depends on how aggressive the treatment is. Mine thinned but didnt fall out but i still shaved my head. I'll talk to you in more depth tomorrow hopefully.
Take care.
Amanda
xxx
ps. hey alison, how are you? hope youre well, havent spoken to you in awhile.
xxx

Hi Amanda, isn't it great that you are nearly at the end of your treatments? I remember saying when you started on this journey that it will be over before you know it!! You have done so well, even though it has not always been easy. I am feeling amazingly well...do not post often unless I really think I can help someone.

Love,

Wow I certainly have a lot to learn about all this. I've been doing some research on the net but until I know more it's pretty worthless at this time. I had the tumors taken off on Monday and they said probably by the middle of this week I should know more.

Thank you so much for taking the time to explain some of this to me Alison. I'm just feeling a bit overwhelmed at the moment and don't know which way is up.

Are you finished your treatments? I hope it at least goes into remission. I'm so worried about my hair and hopefully I'll have the kind of chemo that doesn't make me lose it. Sounds stupid doesn't it? I have cancer and I'm worried about my hair.:D

Do people work through chemo? It's another thing I'm worried about.

Amanda I'm so glad that you only have one more cycle to go. But what is a cycle? See how clueless I am. :confused:

And thanks for reassuring that the bone marrow needle isn't all that bad. I hope they knock me out or else I might just faint. :dizzy:

Yes, I have finished...as mine is incurable, I will have to have more treatment at some point but not yet! Each time you are given chemo, whether it is for a day each month, two days each month or three days at a time, it is called a cycle. For instance I had chemo three days running once per month, which gave me a good break in between. And I had three cycles of one, cytoxan, four cycles of Fludarabine and I was also given Rituxan (six cycles) which is an antibody. Chemotherapy protocols differ according to the patient and the type of, in this case, NHL.

My lymph nodes were in my mesentery which is the lining of the small intestine, so I never knew they were enlarged...never gave me any symptoms. The last scan showed they were gone so I am technically in remission. It was also in my bone marrow but I have not had that retested. I will have another scan at the end of August to make sure the lymph nodes have not grown back and, if they have, I will have the same treatment again.

Amanda was just starting at uni when she was dx and was really uncertain as to whether she should start her studies but she did and has done so well. Some people work, some don't. There is no way of knowing exactly how you will react to chemo so just take it one day at a time. Researching the net is OK as long as you choose reliable sites but some can be scary so do not over do it!!

Don't worry about the bone marrow biopsy..if you faint, you will be out for it!!!

When you get your biopsy results back, they will be able to tell you what type of NHL you have. Then you can take it from there. Lots of people worry about their hair but when it comes to it, it usually does not matter so much any more.

Love,

Alison,
Just wanted to add, before I log off, that your explanations are wonderful.
You've helped me out, too, as well as many others, I'm sure--by your posts. Just thought I'd let you know that.
Thanks,
S.

Thanks for that! I often feel that because NHL comes in so many forms, that I cannot help much with specific types or symptoms, but when someone is just dx, I do like to encourage. Even though I have not been checking in every day, I have followed your journey so far. Hope all goes well for you.

Love,

That's good to hear that you're sort of in remission Alison. I don't know all the types and kinds of NHL there are but I read that some are "curable" and some at best you can expect remission. I'm so sorry that you have one that can't be cured. :angel: I wish I knew more to say more but I don't. All I can do is send thoughts and prayers and you have them.

That's good to hear that Amanda was able to go on with her studies. I'm so worried about losing time from work. My mom passed away July 16, 2006 from breast cancer. My dad, I haven't seen him for over 10 years. So basically, I'm doing this alone. :eek:

I was just reading my other post and couldn't even believe I said I had cancer. It's just such a scarey word and something I never though I'd have to deal with, someone else, not me.

Hey Singer, how are you feeling today? I read you're having some pain. Is that from where they took out your tumor? Mine is giving me fits today.

And now the wait begins. I'm making a list of questions for my oncologist when I get the results back. I just hope that I can breeze through this without any complications.

Thanks for all the advice. Even though I'm new here I feel not so alone in all this. :D

Kayla

Kayla,
You're definitely not alone. This forum was the "beginning" of my journey, to accept my diagnosis and move forward. I've received immeasurable information on here. I quit looking at other websites, because many times they were not correct & would scare me a bit. Here, these are real people, with real circumstances & stories of triumph. Anyway---it certainly has been a comfort.
I've had shoulder pain for some time now. I had a collarbone lymph node removed in early May and the pain accelerated quite a bit. I think I may have some arthritis in there, too, as well as a rotator-cuff problem. It's slowly getting better. Tylenol helps.
I'm sorry to hear you're doing this "alone." Maybe after all your tests are completed and you know exactly what you're dealing with, you could find a support group near you, along with this forum. I don't think you can ever have TOO much support....in just about everything!
I know--I had a hard time reading my post when I first typed "c-a-n-c-e-r." The good news is that modern medicine has come leaps & bounds, and it's not like it was years ago. People can beat it, or go into remission and live healthy, happy lives. That's what I intend to do, after this little "kink" in the road of life. I hope you do, too. :)
p.s. Thanks, Alison

Kayla, I am so sorry you feel alone...hopefully we can provide some support but it must be very difficult for you especially as your mother passed away quite recently.

I agree that saying you have cancer is hard, but it was not so hard for me as my husband of nearly 41 years had Stage 111C rectal cancer nearly four years ago and we went through a really difficult time with that. He is doing so well today but he really had a rough time. We went through it together. When I was diagnosed this time last year, I was not shocked and I certainly did not have such a rough time as he did, so I count myself lucky!

I hope you have some good friends or siblings who will help you through this time. As we say, we are here for you but there may be times when you need someone close to you to support you or just cheer you up.

Love,

Kayla, I wish you all the best. This is a great support system to rely on when you are not sure what to say to the people closest to you. Listen to your docs, don't be afraid to ask any question. Drink tons of water and try to exercise. You will feel tired, but if you exercise, you will get more energy and you are going to need it. Stay positive and stay focused and let people know that you want them to be there for you and you should let them be there for you. Keep a journal. You will look back one day and say "wow, Look what I got thru. I can do anything". and you will! I wish you well!!

Thanks again for the replies. I'm just filled up with all these emotions inside. I guess it's like they say, it's a hard pill to swallow. It's only been 3 days but it's seems like forever already. I just wish I knew what the next step is and I can start it so I can get it over with. :confused: :confused:

I don't have any brothers or sisters so it's just me. I've been trying to find my dad for years now but no luck. I'm renewing my search now and hopefully I'll find him.

Alison I'm so sorry that you husband and yourself have had to deal with this monster. But so glad that for the time being you're both doing well.

Holding on to hope that I can breeze right through this. :D

Kayla

Hi Kayla, as Alison said i have continued with my studies (im a student nurse). it's ironic cause when i was ill last year and they didnt know what was wrong with me they kept me in hospital for a week and when i got out i decided i wanted to be a nurse and applied to uni. I was dx the week i started my course so i had no idea if i should go ahead or not. I'm so glad i did. I have also managed to continue working, i guess it affects everyone differently. i have loads of side effects after chemo and they differ after each treatment, some people find a pattern and know what to expect on which day, but after 4 days i feel completely 100% again. I'm ususally just a little tired and nausous. I dont know when your bone marrow test is but i hope it all goes well and it's good results. When i had mine i didn't think i could take any more bad news, thankfully it was normal.
I'm off out on a date now, I never know to tell the guy I'm ill or not. Oh well.
xxx

Wow Amanda what a turn of events for you huh? I hope all goes well with your studies and this last cycle.

Well, results are in but I don't know what it means. Large B-cells? My doc wants to get the bone marrow done right away so that's Friday. :eek:

It's moving fast now and I'm not sure if I'm glad or not. I have to research what these big B cells means. :confused:

Hey Singer, how are you today? :angel:

Hi..
Thanks for asking, but I'm having a bit of a 'down' day.
I had to have 2 shots to boost my white blood count & red blood count. I was told they make you a little "achey" --which they do. Tyelonol certainly helps, but the achiness is still there.
This 2nd round of chemo, has me a little more nauseated, than my 1st...but, it could also be the shots. Not everyone responds the same. Leave it to me, to be a wimp! From what I understand, some people seem to establish a pattern, too, during chemo---so far, I'm still searching for one.
I do know, though, that when I 'finally' started feeling better (last time) I felt great! So...it's all relative, I suppose.
Yes---be glad you're getting answers quickly! It sounds like you have a good team pulling for you. The "quicker," the "better," so you can move on with life!
S. :)

[QUOTE=KaylaR;3064951]

Large B-cells? My doc wants to get the bone marrow done right away so that's Friday. :eek:

It's moving fast now and I'm not sure if I'm glad or not. I have to research what these big B cells means. :confused:

QUOTE]

Hey Kayla, how are you today? Hope you are well. Try not to worry too much about friday, i promise whatever you are thinking it's not anyway near as bad!

Right this is going to sound a bit textbook but i thought I'd help with your B-cells question.

There are 2 basic types of cells involved in the immune system B-cells and T-cells. T-cells stand for thymic cells and are formed in the bone marrow, they then move to the lymphatic system where they are cytotoxic (killer) and attack and kill infectous microorganisms. B-cells are types of lymphocytes (lymph cells) named for historical reasons after the site where they were first seen in birds. In humans, B-cells first differentiaite in the fetal liver and transform into large plasma cells when confronted with specific antigens (foreign bodies). Once sensitised by an antigen the plasma cell multiplies to form a large clone of similar cells. Each cell in the clone secrets the same antibody to the sensitising antigen.

I hope that makes some sense to you. I've found my course to be extremely helpful when dealing with all this stuff. And it's definatly helped dealing with it to know as much as possible and to knw exactly what is happeneing to you.

xxxx

Thanks so much for the explanation Pinkmada (sorry I don't know you're real name). I haven't had net for the past couple days because of severe t-storms that came through and knocked everything out. It's unbearably hot here and I'm afraid we'll get more tonight.

I called and asked if they could explain more to me but they said to wait until I get the bone marrow done, which is tomorrow. :eek: I'm not sure if I asked this but can you feel the needle going in? I've heard that it's a pretty big needle. Will I "feel" anything? I'm just a wreck right now and haven't slept for worry. Oops one more question...how long does it take to get the answers?

Singer I'm so sorry you're having a rough go right now. But I read on the other thread that you're feeling better. And for that I'm glad. :D

Wish me luck tomorrow. Tomorrow is the beginning of the end of scattering these cancer cells into oblivion, I hope. :)

Kayla

Hey, when i had the bone marrow test done after the local anaesthetic all i could feel was pressure on and in the bottom of my back. It didn't hurt me at all and i was seriously freaked out because a friend who had it done a few years previous told me it was excrutiating pain. I promise it didnt hurt. And it feels really weird a few hours later when your *** cheek wakes up! I think i waited a week for test results and then a couple of days later i was starting treatment. Everything did go really fast in the beginning and it was really overwhelming but speaking to the nurses and asking lots of questions about the drugs and the treatments helps. I ******d all the different drugs that they use for me. The most useful and least frightening site is wikepedia.

I wish you the best of luck tomorrow and i'm praying for you that the results are normal.

Amanda
xxxx

Thanks Amanda :angel: for reassuring me that it won't hurt too bad. I just know deep down that I'll hear a crunch or something and it will freak me out. I'm just feeling overwhelmed by all this and my head is spinning and spinning around. I don't even know why they are doing this test. I just thought it would be okay, you have cancer so let's start the chemo and get rid of it.

Better get going. I have to be there at 10:00AM. :eek:

Kayla

They have to do the test to find out whether it has gone to your bone marrow of not, in which case you would be stage 4 and need more aggressive chemo. When i was first dx I was told i was stage 3 but with the pain i was experiencing and because it wasn't where the mass was she told me it was very likely i could be stage 4. Thankfully i wasn't.
Good luck, I'll be thinking of you all day.
xxx

Kayla,
Just wanted to send you good wishes.
Hope you're feeling better.
Let us know how you are.
XO, S.

First Singer I want to say I'm so sorry you're in so much pain. I read your post yesterday and my heart goes out to you. :angel: And Amanda thanks so much for explaining why they had to even do this test. I'm just so confused about all this. :confused:

The test wasn't all that bad because they numbed me up pretty good. But now it's worn off and Im having quite a bit of pain. I couldn't get comfortable to sleep and I'm soooo tired. :yawn:

Now I just have to wait for the results, the hard part. I just want to get on with treatment so at least these cells are getting a good whack. I'm not sure what day yet but I have to have a port put in. But it's a start anyway.

I'm going back to bed. I hope everyone has a good Saturday. :D

Kayla

I'm not sure if anyone will answer me here. I'm so confused.

Hi Kayla, I am glad the bone marrow biopsy went OK...I am sure you are glad it is over! This is not an easy time for you...waiting for results and to have the port put in but once you start treatment, you will feel you are "on your way"! Try and do some nice stuff while you wait...nurture yourself, read, go to the movies, anything that helps to take your mind of lymphoma for a few minutes! I was where you were at this time last year and I cannot remember what else I was doing during that time! And now, here I am a year later feeling wonderful! So try and look at this as a few months of your life that might not be the best, but will bring new experiences to you, good and bad. That is what life is all about. Then it will be over, your lymphoma will be treated and you will be able to resume a normal life.

Love,

Hi Kayla! I'm so glad the bone marrow test went well and I'm praying you get good results. I don't have any advice about the waiting part. I was a mess at this point during my dx, I'd never had any swollen lumps or nodes so when i was dx with hodgkin's disease and then they told me what it was i was in shock for weeks. Nobody had ever mentioned i could have cancer, i thought i had a severe kidney infection! I think i went back to work though while i was waiting for the results, i just wanted to do my normal stuff and not think about it until i absolutely had to. I guess everyone deals with it differently, I count myself extremely lucky that i could still study and work all the way through this though.

Hope your feeling okay today.
xxx

Kayla,
~~Just wanted to add to Amanda & Alison's positive remarks.
I, too, am glad you're moving forward. I think I might be just about 1 month ahead of you, in the "diagnosis" department.
Listen to these people that have been there---they're both walking testimonies that "this, too, shall pass."
You sound like a very kind, compassionate person and I wish you the absolute best. I know it's not easy---I'm kind of struggling, myself--or at least my Oncologist is struggling a bit with me---to find the proper amounts of drugs to administer. I've always been a bit sensitive, where drugs are concerned... Lucky me.
Anyway, it's always comforting to know you're "on your way to becoming well again." I think it was my friend, Ails (on here) that quoted that to me, not too long ago. It's stuck with me. :)
love, S.

After reading your replies, it seems like I did take your advice without even knowing it. I went down the NJ shore and got back Thursday. I had a blast though and I tried not to think about it. :D But then reality set in...I got the call to come into the oncologist's office first thing on Friday morning because the results were in.

They did find cells in my bone marrow so what they're saying I have is diffuse large b cell, stage IV. They sent me right over to have a line put in and yikes am I sore. :( But I think this will be nothing.

I'm heading for the biggest challenge of my life and I'm not sure about it. My oncologist said it was aggressive which is a good thing. How can that be? Doesn't aggressive mean it's spreading fast? :confused:

Kayla

My oncologist said it was aggressive which is a good thing. How can that be? Doesn't aggressive mean it's spreading fast? :confused:



I read somewhere (I think on the Lymphoma/Leukemia Society page) that aggressive forms of Lymphoma are easier to put into remission than the low-grade ones. So it could indeed be a good thing.

Thanks Caliper for replying. Can you see how confused I am. When he told me it was aggressive I bawled like a little baby. But he assured me that he'll do everything possible to beat this.

I'm going to ****** that society you mentioned and see if I can find out more.

Kayla

I know you must be in shock but he is right....having an aggressive lymphoma means it can be cured...it is the indolent one, like mine, that can be treated but not cured.

Love,

Yes Alison I remember you told me that and I'm so sorry.

But second of all.....................

Happy Birthday!!

I can't believe how things are moving alone now. My first chemo is Wednesday and I'm so nervous. I'll be getting 8 every two weeks, I think. I've been reading what they gave me about what I'm getting, R-CHOP, and I'm not so sure.

I think the Rituximab is the one I'm nervous about since people have an allergic reaction to it and it will take a few hours just for that one. Then all the others have to be put in so it's going to be a long day. The nurse said depending on how I do they may keep me overnight for the first one. And then steriods after that. So it's a scarey drug I think but if it's what's needed I have no choice.

I have errands to run. There's so much to do and so little time. :eek:

I hope you have a fantastic birthday Alison. And eat a piece of cake for me. :D

Just curious. Does anyone have any experience with R-CHOP? I'm trying to find out how "bad" it is, if it is. I don't even know what to buy food wise or should I just eat ice cream...my favorite. :D

If anyone has, were you able to work while getting it? I'm so worried about my job. :(

I did not have the R-CHOP so cannot help there but I did have Rituxan with other chemo. I was very nervous about the Rituxan the first time but it is only a small number of people who have reactions and the staff are very aware and watchful and know how to deal with a reaction if it happens. I was so relieved when I had the first infusion of chemo and Rituxan....it was not nearly as bad as I expected. I did feel ill after my first cycle...I had three days of treatment at a time and felt fine during the three days...and then it hit me! Just for a few days.

Everyone is different so noone can say how you will tolerate treatment. Some sail through and hopefully you will be one of them. I can understand about your job....are they sympathetic about your situation? The most important thing is for you to get through treatment and into recovery. You will have to be careful about picking up infections when your wbc drops.....keep away from people with colds and carry hand sanitizer with you wherever you go. Very important is that you drink lots of water before and after treatment...and during if you can. You must flush out your system and kidneys.

Love,

Thanks Alison. I'm just a little afraid of the whole thing and the reactions to the Rituxan that people have. But they told me I might stay over one night just to make sure nothing happens since I'm alone here.

Thanks for the tips about drinking. I know it's important even without chemo so I'll do my best. I'm so nervous I haven't even eaten in three days. I have the AC blowing full blast and I woke up absolutely soaked this AM. I know that's the cancer causing that now and I just want to get on with out.

As far as my job, I hope they will work with me. I can work remotely so hopefully if I'm too sick or tired they will let me do that.

I just wish Wednesday was here and I could get the first one over with. Then I might feel better. :)

Kayla

Hi Kayla

I had ABVD so not sure on the specifics of CHOP but I'm sure you'll be fine. The first one is the worst simply and soley because you don't know what to expect. It's one thing for us to try to tell you our experiences but quite something else to do it yourself - it's the fear of the unknown.

Good luck

Ails xx

Thanks Ails. It seems lots here have had or are having ABVD and Hodgkens. But mine is non-hodgkens so it's different.

I've read and I've heard that everyone goes through chemo differently. This is the first time in my life I've felt so not in control. I'm self-supporting and self-sufficient but this is something I can't do "self".....if that makes sense. :D

Yes, the fear of the unknown. And you have no idea how strong my fear is.:eek:



Kayla

We don't know exactly how you feel...but we have some idea....we have been there!! I can understand why you want Wednesday to come and go, but try to eat in the meantime. You need to build up your strength.

Hey Kayla, I hope you're well. The first treatment is always the worst. the gave me sedatives to calm me down and i dont actually remember getting to the hospital. Once the put my drip in (i dont have a port) i was getting the premeds and i was fine but when the nurse did the frist drug i burst into tears and sobbed for ages. it was really scary but i promise you it gets better. The first one is usually the longest too, they adminster the drugs over a period of time and they do it slowly at first to monitor you and then speed it up if you are ok with the drugs. my first one was 6 hours long but now i'm only there for 3 hours (providing the pharmacy isn't backed up). i always took someone with me cuz i didnt think i could face it on my own but the last treatment i went by myself, they've started giving me IV antihistamines that are stronger than ones i had before and i just fall asleep. I have my last treatment a week on tuesaday so I'm going to take the nurses a huge bunch of flowers and chocolates to say thank you. they have been great with me and even sat and helped me with my studies. What is it you work as? I work full time as a bar tender so it's pretty full on, i always take 2 days off after treatment but after that im fine. and i managed to keep up with all my course work. everyone reacts differently to the treatment. i found a slight pattern to my side effects which made it easier to handle. i heard a nurse tell a girl that wasnt eating to eat ben and jerrys and my oncologist told me i can eat as many bacon sandwiches as i want! i lost over 2 stone before anyone knew what was wrong and i hadnt eaten for months but the day of my first treatment i had a 3 course meal and was craving fatty foods. i always crave fat and carbs after the first week of having treatment and i've thankfully put on all the weight i lost.

sorry i just went off on a random tangent there. i'm sure i'll speak to you before wwednesday so take care.

amanda
xxx
ps happy birthday alison! i hope you had a huge birthday cake!
x

Kaylar,
I can to this site to see what you were diagnosised with. I see you have non-hodgkins lymphoma. Like someone said it comes in many forms. Each has its own distinct features. Some can be totally cured and others put into remission. Some people do not have another occurance for many years or at all.
Unfortunately for me my mother was first diagnosised with NHL in 2002. She got a sore throat that would not go away. It turned out she had NHL at the base of her tongue. Her type was curable. My brother 8 months later was diagnosed with another type of NHL that is not curable but he had a massive tumor in his stomach that had been there for years. His was stage Ia and my Mom's was stage II because it went into a lymph node in her neck. Most Lymphoma's are
not operated on. They will go away with chemo. The Rituxin was developed to target the cancer cells so it is given the day before treatment. It is very effective and a miracle in itself. The oncologist I worked with was one of the
developers of this treatment and an expert in its use. Usually the side effects from this are minimal. If you do have a simple side effect it can be counteracted while you are getting infused. My brother received CHOP and did not lose his hair or have too many problems. He still worked 80% of the time. My mother who was elderly had bad kidneys and ran into every complication you can imaging. She survived the caner but unfortunately she
passed away 3 yrs. ago from a heart attack. My brother almost made it 5 yrs. cancer free but unfortunately he got leukemia from the radiation that was
given to him. This is rare but unfortunately he was not too lucky. He was dX'ed in Dec. and will be having a stem cell transplant in a month. We pray for him everyday. I get the impression you are young. Your age can help you with dealing with side effects but if you are older and in good physical shape
and do not have any other illnesses you will more than likely do very well with
treatment. You must eat and keep your body in as best shape as you can.
Try and exercise when you can and eat well. I am sorry that you are alone in this. It is good to join a support group or see if your friends can support you in helping out on the days that you do not feel good. If you have no one that can help prepare what you will need before your treatments so that it will be
easy for you to pop something in the micro. Drink plenty of water during your
treatments so you do not get a urinary tract infection. The chemo can irritate your bladder. Drinking water will prevent this. Do not be afraid to ask
questions of your health care team. Let them know that you are alone so that if you are not feeling well that someone can check up on you. I would
call my patients that were alone or elderly so that I knew that were ok and
did not need anything. BE informed and stay away from reading things on the internet. If you do not know what you are reading you will be even more scared and alot of info is general anyway. The bone marrow bx should not be too bad if someone who does them all the time is doing it. They will numb the
area and put a needle in you hip area and extract bone marrow. It will be tested to see if the lymphoma has gone to the bone marrow. I saw very little cases where it involved the bone marrow. If it is then the chemo will take care of it. I know that this is alot of info to absorb and you are scared. I am
sorry that you have to go through this alone but most cancer centers have
support groups. I encourage you to join one so that you can establish friendships where you live.

Know what type of NHL you have and what stage you are in. Go to your first treatment without any reasons to think that you will not do good. If they give you prednisone after the treatment you will probably have a burst of energy. Do the best you can and do not give up hope. I know many people
who have survived this diseae. We saw many cases of NHL where I worked and most of them survived.

If I can be of any help to you at all let me know.

Hugs to you
Linda


P.S> My mom had diffuse large B cell lymphoma which is aggressive but curable. My brother had
bulky tumor which was indolent and not curable. Neither had bone marrow involvment.

Thanks everyone for replying and explaining things to me. I'm just so overwhelmed at the moment you have no idea. I was supposed to go to work today but I've been so sick....and I haven't even had chemo yet. I haven't eaten and can't sleep and just wish I could get the first one over with.

Thanks Linda for your reply. I have NHL, diffuse large B-cell with bone marrow involvement. My oncologist said it's aggressive which is a good thing. :confused:

I'm so hoping that I don't lose my hair. But I think I have to think about seeing the "wig" people.

I'm so sorry about your brother and your mom. Just know that there is someone out in the far distance praying realling hard that he makes it through this.

I need to sleep, I'm so tired.

Kayla

Sorry to hear you are sick. You can do this. My mother was elderly, had very bad kidneys and had every complication you can imagine and she beat it. She did not even finish her last chemo because of all the problems. She still could do things even though she was going through treatment. What I am trying to say is that no matter how bad you feel and you will at times you can go on and beat this cancer and be cured. My mother had a full cure. She would still be here but she had a heart attack. Take one day at a time. Put yourself in a place that you feel good and imagine being there while you are getting treatment.
During your chemo try and talk to others around you to keep your mind off things. Do not read into all the reactions from Rituxin. I never saw one person have a bad reaction from it and our facility was very big. Think of it as the
essence of life going through your veins. It is something that is going to bring you closer to health. I am sorry that your Mom has passed and you are not
in communication with your father. I am sure that your Mom will be with you in spirit and comfort you from above. We are all here for you. You are not alone.

Good luck tomorrow on you first day of treatment. I am sending you healthy
*****.
Hugs to you
Linda

Thanks again Linda for helping me with this. :angel: I was busy at work finishing projects and getting things done. I'm taking off the rest of the week and hopefully I'll be able to go to work by Monday. If not, my boss said they'd work with me and I can work at home if need be. ;)

I'm just a wreck but after I get this first one under my belt I'll know what to expect. You have no idea how I hate to be nauseous so that in itself is a worry. But I worry about everything anyway.

Better get going. I have to be there at 9:30 and then it begins. :eek: Oh and good news, they're going to give me something when I get there to help calm me down. And boy do I need it. I'm taking my Ipod to try to keep my mind off it.

But I'll keep your thought in my mind....that it's the essence of life running through my veins.

And I'm offffffffffffffffffffffffffffff!!!

Hope it went well today and that you feel a little less anxious about the treatment. I was on such a high after my first one! It was such a relief to get it over with. Don't forget to drink loads of water and eat whatever you fancy.

Love,

Thanks Alison. But today I 'm having my first one. I just wish it was all over. And I hope I don't have to stay over night. I hate hospitals with a passion. :eek:

I came back to ask another question but it left my brain. :confused:

Time to go. I'll be back ASAP and I hope I tell you it was a breeze.

Thanks everyone again for all your support. :angel:

Dear Kaylar,
Well by the time you read this you will have conquered your first infusion.
They have great drugs for nausea so you should be able to get in under control. They put it in your IV as well. Hope that you did not have to stay overnight too. I know you must be scared. I would be worst than you and I worked in the cancer center doing this. I worry about everything too so do not think you are alone in your fears. It is normal to have fear and concerns. I am glad that your boss is working with you. If you are not able to work you can get a social worker at the hospital to talk with you and she can help you with getting on social security disability. She has all connections and knows where to go for help. Do you have disability insurance with your work?
You can usually get disability during your illness if you are not able to work as well as food stamps. The social worker at the hospital is there for you and if
you need help ask for it. If you have a car loan sometimes it has coverage that will make your car loan payment if you are ill and can not pay.. Alot of times you are paying for these things and sign the car loan papers and do not even know that it is on there. Check all these things out to see if you can get some assistance. Our hospital even provided to some patients money to help pay rent, utilities and such. There are alot of services available to you during your illness so it is a good idea to seek out the social worker while you are at the hospital. When my brother was ill our facility was able to get him on SS and food stamps and help with his utilities and everything. He was not
able to do enough work to pay for everything and he also did not have health
insurance so he was able to get on Medicaid for medically needy. These are
all options that you can look into.

Let us know how you did

Hugs to you
Linda

Hello. I am new to this post. I have some questions for you all.
I have had this lump/bump in my left arm pit for about three weeks. It was extremly painful and I couldn't hardly lift my arm above my head or carry my son around. I went to my primary Dr and he said it looked like a 'pimple' or infected sweat gland. So they cut it open and drained it. NOt much puss actually came out though. So they packed it with gauze and I came back for a few days to have it cleaned out. Well, it finally healed and I was back to normal. The next week, another lump popped up, but more on the upper inside part of my arm pit. I could hold it in my hand it got so big, about a quarter. it was not as painful, but still very uncomfortable. I was a little nervous and figured maybe it was another sweat gland. Then, another bump popped up almost in the exact position on my right arm pit. This has been for about a month now and they seem to come and go now. When I called my Dr again, he said I should start antibiotics to clean up the sweat glands. My mom is now worried saying I need to see a specialist. So i have an appt with a general surgeon specialist, but am concerned that I am going to pay money for another Dr to pass me off the anothe Dr.

My question is, did any of you have this experience? I am concerned it could be my lumph nodes, but would feel stupid if it was just clogged sweat glands. My Drs don't seemed concerned at all. I read about night sweats and strangley I have been expereincing them lately alot more than normal. Any suggestions or advice?
Thank you

Declansmom,

I just read your post. First it is not unusal to have an infected sweat gland.
I am alittle concerned that you have had more than one on each side. Did you say they come and go? Is the tissue red and irritated? The fact that it hurts is good and that is comes and goes is good. You may be having some kind of
reaction to your deodorant. It may be plugging up your sweat glands. If you took the antibiotics and did not complete the rx you will not clear up an infection and it will spread to other sweat ducts. Usually this will occur on one side. You said it was on both sides. Do you have a fever? If so does it come at night?
Do you have any other swelling? In the groin? Or anywhere else down your arm?

Did the doctor check you in other areas for any swelling? Did you just have a baby? Are you breastfeeding?

The fact that you are having night sweats may or may not be related to this.
Night sweats can be a indication for many illnesses that are serious but can also be from less serious things as well. You need to have blood work and I am surprised that they did not do a complete blood count. I would still go to
the specialist. Your health and peace of mind is worth anything you have to
pay. He will be able to examine your body and tell you if they are lymph nodes or not. It is hard to say what it is unless you can see it and ask questions that would help determine what you have.

Just to be on the safe side I would just go to ease your mind and your Mom's.
I would definately get a CBC, and chemistry profile that includes a LDH. Start with that and have a good examination from the specialist.

Write down all your symptoms, when they started, the duration of each occurance, what medications you are taking and any questions that you are
concerned with. Stay away from seeking info with the internet. You do not
want to read into this and get yourself scared for no reason.

Let us know how you did.

You will be fine.
Linda

Linda,
Wonderful information!
Yes...stay off the internet, except for forum's like this.
I learned the hard way.
Good luck to you, declansman.
S.

Kaylar

I was diagnosed with NHL in 1989 and I'm still here.
I hope all goes well.

Oldchurch

I did have a CT scan and blood work. I was told everything looked normal. But I still have this ball in my arm pit that is still there. So I was told to wait and see what it does. My Dr said to come back in a month if it is still there.