Hodgkins & Non-Hodgkins Lymphoma survivors

sk8ermadre
sk8ermadre Member Posts: 3
in Lymphoma (Hodgkin and Non-Hodgkin) #1

 

Hi, I am a 12 year survivor of advanced Hodgkins Disease Lymphoma. I had nodular sclerosing type of tumors, about 30 in my chest and neck. When diagnosed I was stage 3 with type B symptoms if I remember correctly and about 26 years old. I received chemo for about 12 weeks and then another 12 weeks than radiation for another 3 months. I was given the Stanford V regimen. I have since had Raynaud's phenomenon, Mitrial regurgitation, aortic insufficiency and pulmonary hypertension. Not that I am complaining because I have lived to see my four daughters grow up and I would not trade that for the world. But I was just curious if anyone else has had these problems. I am 39 now and have always exercised adequately and have never been over weight. Last year I was diagnosed with subclavian steel syndrome and am currently awaiting a subclavian carotid bypass surgery. The doctor said this was a direct result of the radiation therapy to the chest  during treatment of the Hodgkins Disease. Now I have a rare type of anemia like alcoholics have with vitamin B deficiencies such as a severe folic acid and thiamin ddeficiency. I do not drink but made the mistake of telling the doctor that I might have one or two Margaritas in the summertime you know when its really hot out on 4th of July or something but it is a rarity. Well because of that the damn doctor has it stuck in her head that I am an alcoholic despite telling her that I am not. Now she treats me like I am responsible for my health problems because I am a drunk but seriously I do not drink. I have county insurance now, the same one given to indigent individuals so we are pretty much just a number and no one wants or has to be held accountable for the treatment we receive. My hip hurts so bad now that it wakes me up from sleep but does not hurt when walking or using it or anything. Only when sitting, trying to sleep or sitting crossed leg, again I am only 39 years old and have no diseases or disorders in the family other than paternal family with bone cancer and my father has Diabetes Type II Agent Orange from Viet Nam but no genetic disorders. My question is do any of  you long term Hodgkins Disease or Non Hodgkins  Lymphoma survivors have any of the health issues that I mentioned.

Thanks again,

Robyn

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
    Robyn

    Hello and welcome to the group, Robyn. Congratulations on your 12-year survivorship from Hodgkin Lymphoma. I'm sorry to hear that you are having so many health problems and I am especially sorry to hear that you don't feel respected by your doctor. (I'm not sure what you mean by "county insurance").

    I hope someone here can help address some of your concerns. I can't as I have only been in remission for a short while and I did not receive radiation. But I wanted you to know that I read your message, with concern, and I want to wish you the best. I hope you can find relief from your pain and suffering.

    Rocquie

     

  • NANCYL1
    NANCYL1 Member Posts: 289
    #3
    NON-HODGKINS LYMPHOMA

    Hello Robyn:

    I am sorry to hear that you have had so many health difficulties.

    I have had for two years, at least, non-Hodgkins B Cell Lymphoma which has responded well, thus far to Rituxan infusions, every six months.

    I have also had heart problems, but don't know whether they are exactly like yours.  I had a Mitral Valve Prolapse all my life and in 2008 had open heart surgery to replace it.

    Now, I have calcification of my Aortic Valve and will most like need to replace that valve.

    Too bad your doctor is not respectful.  That would certainly make things difficult.

    Nancy

  • Mary N.
    Mary N. Member Posts: 100
    #4
    NANCYL1 said:

    NON-HODGKINS LYMPHOMA

    Hello Robyn:

    I am sorry to hear that you have had so many health difficulties.

    I have had for two years, at least, non-Hodgkins B Cell Lymphoma which has responded well, thus far to Rituxan infusions, every six months.

    I have also had heart problems, but don't know whether they are exactly like yours.  I had a Mitral Valve Prolapse all my life and in 2008 had open heart surgery to replace it.

    Now, I have calcification of my Aortic Valve and will most like need to replace that valve.

    Too bad your doctor is not respectful.  That would certainly make things difficult.

    Nancy

    Pain

    Hellow Robyn,

    I continue to have pain in my legs and knees especially when lying down.  I have found that I have to really be careful with the amount of fluids I get.  I am constantly drinking water and together with extra calcium and other minerals find that I can keep it under control. For me it was often cramping.  I am sorry that you are being disrespected but I do think any kind of treatment wears down our bodies .

     

  • sherry84
    sherry84 Member Posts: 16
    #5
    Mary N. said:

    Pain

    Hellow Robyn,

    I continue to have pain in my legs and knees especially when lying down.  I have found that I have to really be careful with the amount of fluids I get.  I am constantly drinking water and together with extra calcium and other minerals find that I can keep it under control. For me it was often cramping.  I am sorry that you are being disrespected but I do think any kind of treatment wears down our bodies .

     

    Hi Robyn,
    First of all,

    Hi Robyn,

    First of all, congrats on your 12th year remission.

    I too had Hodgkin's stage 2A nodular sclerosis at age 26 back in 1984 so this January, it will be 30 years for me. My treatment regimen was 2 months of chemo, 1 month of radiation, back to 2 months chemo and I'm pretty sure my chemo regimen (TBV) has not been used for a very long time. I developed radiation induced colitis, radiation fibrosis of the muscles in the neck and upper back, low thyroid and fatigue and had a quadruple bypass along with aortic valve replacement 10 years ago. There is a list of many long term side effects that we are at risk for but its not a guarantee of which ones we will get (if any) or to what degree. I'm so sorry that you were given the disrespect you truly do not deserve from the Dr. When I started developing side effects, I had Drs who dismissed my symptoms as nothing and all in my head. We know when there is something wrong with us that needs further investigation. The best advice I ever got was from my cousin who had Hodgkin's at age 26 back in the late 60's. He told me to expect conditions/illnesses that Drs may not know what or how to treat but most likely, it will probably be from the radiation & chemo. I now go for yearly checkups to a long term clinic for adult survivors of pediatric cancers which I find a great help. 

    I have not had your specific long term side effects but I'm sure there are others who have. The people on this forum are very supportive and have much to offer.

    Sherry

  • Stalyn
    Stalyn Member Posts: 13
    #6
    Hip pain!

    Jw if hip pain has always been a factor for you?

  • Stalyn
    Stalyn Member Posts: 13
    #7
    Hip pain!

    Jw if hip pain has always been a factor for you?

  • cathyp
    cathyp Member Posts: 376 Member
    #8
    sherry84 said:

    Hi Robyn,
    First of all,

    Hi Robyn,

    First of all, congrats on your 12th year remission.

    I too had Hodgkin's stage 2A nodular sclerosis at age 26 back in 1984 so this January, it will be 30 years for me. My treatment regimen was 2 months of chemo, 1 month of radiation, back to 2 months chemo and I'm pretty sure my chemo regimen (TBV) has not been used for a very long time. I developed radiation induced colitis, radiation fibrosis of the muscles in the neck and upper back, low thyroid and fatigue and had a quadruple bypass along with aortic valve replacement 10 years ago. There is a list of many long term side effects that we are at risk for but its not a guarantee of which ones we will get (if any) or to what degree. I'm so sorry that you were given the disrespect you truly do not deserve from the Dr. When I started developing side effects, I had Drs who dismissed my symptoms as nothing and all in my head. We know when there is something wrong with us that needs further investigation. The best advice I ever got was from my cousin who had Hodgkin's at age 26 back in the late 60's. He told me to expect conditions/illnesses that Drs may not know what or how to treat but most likely, it will probably be from the radiation & chemo. I now go for yearly checkups to a long term clinic for adult survivors of pediatric cancers which I find a great help. 

    I have not had your specific long term side effects but I'm sure there are others who have. The people on this forum are very supportive and have much to offer.

    Sherry

    Hi Robyn,
    Sherry gave you a

    Hi Robyn,

    Sherry gave you a great answer.  I too am a long term Hodgkins Survivor.  24 years for me.  Radiation in 1989 and ABVD in 1994.  In addition to cardiac, pulmonary, RFS, thyroid etc etc. I was dx'd with invasive ductal carcinoma.  Breast cancer  a direct result of radiation for  Hodgkins.  Like Sherry I am followed at a Long Term Clinic for adult survivors of pediatric cancers.  No one dismisses any symptom there.  They are so knowledgeable about our unique circumstance of surviving harsh radiation and chemo tx's from long ago.

    I love Sherry's cousins advice, so spot on.  I had to leave my primary care physician of 22 years when he would not recognize LT survivors potential effects from treatments.  Hopefully you could find someone who is more open minded and knowledgeable

    Best wishes,

    Cathy

     

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