Long Term HD survivors

lindazame
lindazame Member Posts: 46
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi All,
I would really like to talk with other long term survivors of Hodgkin's Disease. I was treated in 1971 and I am looking for other survivors treated then or even later. Please contact me directly at zame@earthlink.net thanks!

Comments

  • Maur1966
    Maur1966 Member Posts: 23
    #2
    Hello~

    I am not a long termn survivor, but I plan on being a survivor! :) completed treatment on 3/21 and I have a follow up pet scan next month. Praying that all is clear with that one. Any how, I just wanted to ask you what type of treatment did you have back in 1971? Also, is there anything that you have done/are doing to keep from relapse? Thanks for your input and CONGRATULATIONS!!~ Maureen
  • kiren
    kiren Member Posts: 40 Member
    #3
    Maur1966 said:

    Hello~

    I am not a long termn survivor, but I plan on being a survivor! :) completed treatment on 3/21 and I have a follow up pet scan next month. Praying that all is clear with that one. Any how, I just wanted to ask you what type of treatment did you have back in 1971? Also, is there anything that you have done/are doing to keep from relapse? Thanks for your input and CONGRATULATIONS!!~ Maureen

    Hi I am HD survivor diagnosed in 1998. Treated surgery+ABVD+rad. Doing good with HD, no relapse, but recently 6months before got diagnosed with Tongue cancer just initial stage. Well surgery again, doing good now. Don't know this new ca was related to HD or rads, or just luck! any way I am happy to be alive today. Good luck to U all survivors.
  • Glorihl
    Glorihl Member Posts: 11
    #4
    Hello, I am being treated for HD, I was supposed to have my last chemo on May 3, but a CT scan showed a shadow in the mediastinum and lung infiltrates and I will be having a PET scan done on June 1st. My doctor is waiting in case I have an infection, so it won't interfere with the PET. I'm scared, but also hopeful that it will be nothing more than scar tissue. I'm curious, what kind of treatment did they have back then?
  • lombards
    lombards Member Posts: 5
    #5
    Hi there:
    My husband was diagnosed with stage four Hodgkins in 1973. His treatments included a spleenectomy, MOPP therapy and cobalt. We are checking out this website together and he wanted to reply to your letter. Have you had any other health issues since Hodgkins?
    s & p
  • Bonebrake
    Bonebrake Member Posts: 7
    #6
    lombards said:

    Hi there:
    My husband was diagnosed with stage four Hodgkins in 1973. His treatments included a spleenectomy, MOPP therapy and cobalt. We are checking out this website together and he wanted to reply to your letter. Have you had any other health issues since Hodgkins?
    s & p

    I was diagnosed with stage II Hodgkins Disease 31 years ago at the age of 10. Except for removal of a non-cancerous thyroid cyst 16 years ago, I have not experienced any secondary cancers. Because I was treated with some chemo and high-dose radiation throughout the neck and chest, I take three daily doses of Sialor. The drug is manufactured in Canada and is used to treat dry mouth. It is an over-the-counter medication reported to reduce the propensity for lung cancer. I drink a lot of green tea and try to eat fresh fruits and vegetables (including broccoli).
    Due to muscular/skeletal problems, I do experience limited pain each day. I also celebrate each new day. I have been married for 17 years, have three healthy, natural children, and would enjoy talking with other long-term cancer survivors who were treated with high-dose radiation in the eary 1970s.
  • Bonebrake
    Bonebrake Member Posts: 7
    #7
    A article which may be of interest can be found at http://caonline.amcancersoc.org/cgi/content/full/54/4/208
    and discusses the latest in long-term complications following childhood and adolescent cancer.
  • klbermudez
    klbermudez Member Posts: 2
    #8
    Hello, I'm 16 years out of Stage IV Hodgkins. My treatment was also the spleenectomy (that was for staging purposes along with the lymphagiogram)I started with the MOPP chemo but had so many problems with the prednisone part of the treament that my Dr switched me to COP so he could take me off the prednisone and switch the nitrogen mustard to cytoxen. I guess it worked fine because I'm still here. I had some side effects from treament - most notably was the chemical menopause, good thing I had already had my kids. I have also had the numbness that never went away in my hands and feet. I also have some joint problems but who knows, it could simply be getting older. I'm just glad for the additional time I have had because it has allowed me to see my kids grow up!
  • hodgcando
    hodgcando Member Posts: 2
    #9
    lombards said:

    Hi there:
    My husband was diagnosed with stage four Hodgkins in 1973. His treatments included a spleenectomy, MOPP therapy and cobalt. We are checking out this website together and he wanted to reply to your letter. Have you had any other health issues since Hodgkins?
    s & p

    Hi, I had Hodgkins stage IVB in 1975 (i was 25y.o.). I had the MOPP and radiation. I get sick very easily since havng had the disease: cold, infections. How about you?
  • bonportelance
    bonportelance Member Posts: 1
    #10
    longterm survivor of HD illnesses

    Hi, I wonder if there is a support group for long term survivors.  I had Hodgekins 34 years ago when i was 18. While I'm thrilled to be alive my health seems to be deteriorating with severely high blood pressure, high cholesterol, endomitriosis, neuritis (causing extreme difficulty walking), severe hemmrhoids, two hernias, osteoporosis, and now increasingly recurring viral infections.  I can not find any medical support.  Is anyone else in the same position?  The threads seem to be very old so not sure if there is new information.

     

  • MTHOM
    MTHOM Member Posts: 3
    edited February 2021 #11
    HD Survivor Diagnosed 1993

    I am a survivor of 28 years, diagnosed in 1993 HD Stage 2B.  I had my spleen removed & high doses of RT to jaw & chest areas. 

    Maybe a year after finishing RT I developed hypothyroidism due to the RT killing my thyroid.

    Diagnosed 2 years ago (2019) with breast cancer caused by the RT. 

    I have acid-reflux that started years back, but I am learning now it was probably caused by the RT. 

    Recently having shortness of breath, doctors say it's pulmonary fibrosis caused by the RT to the chest. 

    I am looking for fellow long term survivors.  [Content edited by CSN Support Team]

    I really look forward to being in contact with someone that has been through this. 

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