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  • Hodgkin's mostly a "young person's" disease???

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    Old 06-06-2007, 07:52 AM   #1
    singer78
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    Arrow Hodgkin's mostly a "young person's" disease???

    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
    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.

    Last edited by singer78; 06-06-2007 at 10:05 AM.

     
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    Old 06-06-2007, 12:11 PM   #2
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    Re: Hodgkin's mostly a "young person's" disease???

    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

     
    Old 06-06-2007, 12:40 PM   #3
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

    Last edited by singer78; 07-04-2007 at 12:40 PM.

     
    Old 06-06-2007, 02:27 PM   #4
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

     
    Old 06-06-2007, 03:17 PM   #5
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

    Last edited by singer78; 06-06-2007 at 03:20 PM.

     
    Old 06-06-2007, 03:45 PM   #6
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    Re: Hodgkin's mostly a "young person's" disease???

    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

     
    Old 06-06-2007, 04:08 PM   #7
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

    Last edited by singer78; 06-06-2007 at 04:25 PM.

     
    Old 06-06-2007, 05:08 PM   #8
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

     
    Old 06-06-2007, 06:03 PM   #9
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    Re: Hodgkin's mostly a "young person's" disease???

    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.

    Last edited by singer78; 06-06-2007 at 06:06 PM.

     
    Old 06-07-2007, 07:29 AM   #10
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    Re: Hodgkin's mostly a "young person's" disease???

    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

    Last edited by LINDA505; 06-07-2007 at 07:36 AM. Reason: adding another comment

     
    Old 06-07-2007, 07:44 AM   #11
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    Re: Hodgkin's mostly a "young person's" disease???

    Quote:
    Originally Posted by LINDA505 View Post
    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.

     
    Old 06-07-2007, 07:52 AM   #12
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    Re: Hodgkin's mostly a "young person's" disease???

    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 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.

    Last edited by singer78; 06-07-2007 at 07:57 AM.

     
    Old 06-07-2007, 08:10 AM   #13
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    Re: Hodgkin's mostly a "young person's" disease???

    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

     
    Old 06-07-2007, 08:14 AM   #14
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    Re: Hodgkin's mostly a "young person's" disease???

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

     
    Old 06-07-2007, 05:27 PM   #15
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    Re: Hodgkin's mostly a "young person's" disease???

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

    Linda

     
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