non-hodrkins

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mwarren
mwarren Member Posts: 20
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Morning all
I am new to this discussion, I originally had breast cancer and am llike 3 days shy of the 5 year mark. naturally I felt great, I had beat that cancer. Found a huge lump Sat a week ago,doctor Tue. CT full body Wed, surgeonou. Fri. O.K. my reg doc, not the oncologist, told me that there was only one node enlarged, so I felt pretty good seeing the surgeron. He first of all asked me why I had chemo and rad for breast cancer, I told him cause that, is what they said I needed
He then examined the node (the size of a large walnut ) and scheduled surgery for the 27th . I said to him it's only one, right? Answer, no it's several. I immediately started thinking again then he proceedes to tell me that lymphoma has been said to be one of theip side effects of chemo! Shock! I asked him why I wasn't told this. He said if they told us every side effect it would take years!! Went into surgery with a very "glass half full" idea. Now he said he would be very surprised if the biopsy were negative! The node he removed was in the groin area.
Has anyone oiut there contracted lymphoma in this manner?

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  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
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    causing Lymphoma
    I have follicular non hodgkins. Diagnosed a little over a year ago.Really sorry you have to be here. Sorry any of us have to be here on this site.I know a lot of medications are advertised as can cause NHL. I did not know the chemo could also cause it,but it does make sense. Its just another chemical that is being put into the body. We eat chemicals everyday that are generously approved by our caring government and cancer is steadily on the rise. Sorry to sound so positive,but only telling it like it is.John
  • mwarren
    mwarren Member Posts: 20
    #3
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    non hodgkins
    Thanks for the input John. I really need honesty now. I agree with what you say. Unfortunately the treatment is with the same chemical mixture I had before. I guess I should be greatful for the extra four years. I hope I get another four cause my 2 year old twin granddaughters will at least be able to remember me when I go. Who knows, maybe they will have a real cure by then!
    Thanks again,
    Mary
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
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    mwarren said:

    non hodgkins
    Thanks for the input John. I really need honesty now. I agree with what you say. Unfortunately the treatment is with the same chemical mixture I had before. I guess I should be greatful for the extra four years. I hope I get another four cause my 2 year old twin granddaughters will at least be able to remember me when I go. Who knows, maybe they will have a real cure by then!
    Thanks again,
    Mary

    Chemicals
    Mary,
    I try to tell it the way I feel. It really makes us think more when something like this hits. I may be wrong or it is wishful thinking,but I really feel like a cure or at least a gigantic breakthrough is coming in the very near future. John
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
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    mwarren said:

    non hodgkins
    Thanks for the input John. I really need honesty now. I agree with what you say. Unfortunately the treatment is with the same chemical mixture I had before. I guess I should be greatful for the extra four years. I hope I get another four cause my 2 year old twin granddaughters will at least be able to remember me when I go. Who knows, maybe they will have a real cure by then!
    Thanks again,
    Mary

    chemicals
    Mary,
    When i was getting my treatments I would talk to the other people there to find out what kind of cancer they were being treated for. I was actually looking for someone with the same thing I had. I never did though. They were all Breast Colon or Lung. I would ask them what chemicals they were getting. If I remember correctly the Breast patients were getting something I had never heard of before. I was getting R-CVP for the Lymphoma. Maybe they use different mixtures at different hospitals. I really do not know how that works. As a matter of fact when I would tell them what I was being treated for they would all say the same thing."Whats that?" It was hard trying to explain that it starts in the lymph nodes and usually remains there.They all thought it was something that started somewhere else in the body and had spread there. As a matter of fact I got that question several times. Even when I would say it started there they did not seem to understand.They said they did ,but you could see the wonderment in their eyes.
    There are a few people on here that had other cancers and now have lymphoma years later. I am sure they will be in touch with you when they get back on line. In the meantime just try to relax. Lymphoma is for the most part very slow growing and there are always treatments. John
  • mwarren
    mwarren Member Posts: 20
    #6
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    COBRA666 said:

    chemicals
    Mary,
    When i was getting my treatments I would talk to the other people there to find out what kind of cancer they were being treated for. I was actually looking for someone with the same thing I had. I never did though. They were all Breast Colon or Lung. I would ask them what chemicals they were getting. If I remember correctly the Breast patients were getting something I had never heard of before. I was getting R-CVP for the Lymphoma. Maybe they use different mixtures at different hospitals. I really do not know how that works. As a matter of fact when I would tell them what I was being treated for they would all say the same thing."Whats that?" It was hard trying to explain that it starts in the lymph nodes and usually remains there.They all thought it was something that started somewhere else in the body and had spread there. As a matter of fact I got that question several times. Even when I would say it started there they did not seem to understand.They said they did ,but you could see the wonderment in their eyes.
    There are a few people on here that had other cancers and now have lymphoma years later. I am sure they will be in touch with you when they get back on line. In the meantime just try to relax. Lymphoma is for the most part very slow growing and there are always treatments. John

    non hodgkins.
    John
    Thanks again for sharing. The chemical I had is more commonly called" re devil" you can google that and get the 'real' name. I spoke with another nurse about my current condition and she said,yes, she had heard of it, and that chemical can also cause lukemia. The only thing is the treatment for lymphoma is with the same chemical that caused it! Go figure!!! Follow up with surgeon is the fifth of july. I am goo.g to see my twin baby granddaughters on Wed. I have to see them before I loose my hair again cause that is an awful sight and I don't want to scare them. They are only two. BTW you have a beautiful family! Thanks again for talking to me. It helps a lot!
    Mary
  • JoanieP
    JoanieP Member Posts: 573
    #7
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    mwarren said:

    non hodgkins.
    John
    Thanks again for sharing. The chemical I had is more commonly called" re devil" you can google that and get the 'real' name. I spoke with another nurse about my current condition and she said,yes, she had heard of it, and that chemical can also cause lukemia. The only thing is the treatment for lymphoma is with the same chemical that caused it! Go figure!!! Follow up with surgeon is the fifth of july. I am goo.g to see my twin baby granddaughters on Wed. I have to see them before I loose my hair again cause that is an awful sight and I don't want to scare them. They are only two. BTW you have a beautiful family! Thanks again for talking to me. It helps a lot!
    Mary

    Mary
    Hi, I am so sorry that you are going through this journey again. I had follicular NHL in Jan 2009 and in remission since June 2009. If you have lymphoma there are many treaments and some of them are not very harsh. Your twin grandchildren will never probably notice if you wear a wig. Please let us all know how you are and the final dx. There are many people on this site that have had lymphoma for 10+ years. I know it is hard to think about the future but I think after your dx the doctor will tell you what he told me. This is not a death sentence. We have many new medicnes and more ready to go. Please know my prayers are with you and your family. You have come to the right site. You will find compassion, knowledge and some laughter.
  • michelleb1064
    michelleb1064 Member Posts: 53
    #8
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    mwarren said:

    non hodgkins.
    John
    Thanks again for sharing. The chemical I had is more commonly called" re devil" you can google that and get the 'real' name. I spoke with another nurse about my current condition and she said,yes, she had heard of it, and that chemical can also cause lukemia. The only thing is the treatment for lymphoma is with the same chemical that caused it! Go figure!!! Follow up with surgeon is the fifth of july. I am goo.g to see my twin baby granddaughters on Wed. I have to see them before I loose my hair again cause that is an awful sight and I don't want to scare them. They are only two. BTW you have a beautiful family! Thanks again for talking to me. It helps a lot!
    Mary

    "The red devil"
    Adriamycin also known as "the red devil". I know all about what your going through. I have been recieving this as part of my chemotherapy. It is the worst stuff. Everytime they give it to me my stomach turns right away. Not only can it cause heart problems and infertility but it can also cause cancer. Most common cancers it can cause are leukemia, breast cancer, bone cancer, thyroid cancer, stomach cancer, and if you are recieving it to treat lymphoma it can cause other forms of lymphoma but not typically the lymphoma you were originally treated for. Sounds like a damned if you and damned if you dont kind of drug.
  • cookingirl
    cookingirl Member Posts: 183 Member
    #9
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    NHL
    Mary - if you need chemo again, please ask about Treanda/ Bendamustine. It's one of the newer ones for lymphoma (I have Follicular B cell, stage 4)and I just completed 6 months of it. Did CVP-R last June - Nov. without much shrinkage of my abdominal lymph nodes. A large cancer center in Tampa recommended we try Treanda - it's success rate for remission is 76%, compared to 54% for CHOP, one of the older ones which makes you completely lose your hair. There is a lot of thinning with the other two I mentioned, but you're not completely bald as with the "red devil" drug. Treanda wasn't easy for me and I spent weeks in bed and received a "partial" remission rather than complete, but that's because I had a large solid tumor and it sounds as though yours is not. I've had NHL for two years now and like John and the others, so very sorry it sounds like that will be your diagnosis. While not curable, it's treatable and if we have to have this disease, it probably has a higher survival rate than most. Wishing you well and will pray for you - Fran

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