Hodgkins Survivor

robinscottdavid
robinscottdavid Member Posts: 11
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was 32 when I was diagnosed with IIB lymphoma with a mediastinal mass, tumors under both arms and in my neck. I was in congestive heart failure when I was finally diagnosed. My cancer presented in the skin with sores all over my body that got staph and would not heal. The staph got into my blood stream and my heart was collecting fluid. A few months earlier, after going to 2 dermatologists, 2 ObGyn's (about the lumps under my arms), and 1 regular physician, I went to Emory University Determatology Dept and was told it looked like I had scabees. I know I DID NOT and when the test came back negative, they told me the night sweats, weight loss and sores and lumps were caused by anxiety. It took over 2 years, 60 lbs. and a loss of sanity to finally be diagnosed with Hodgkins Lymphoma. I was given 3-4 months without treatment. Of course I chose treatment and , with Gods awesome grace, I am here- 10 YEARS LATER:) 2 things I encourage: 1)Be your own advocate- I almost died because a lack of education among professionals. hodgkins often presents in the skin and all the other symptioms were there- yet no one listened and took time to figure it out. 2) Keep hope and pray daily- God answered so many questions I had and so many prayers. 3) Pray for a Mono vaccine. The same cell that causes Mono is the one that multiplies into Hodgkins. If you have never had mono, you will never get Hodgkins. We can eradicate it with one simple vaccine:) Any questions I am glad to answer. Keep the faith:)

Comments

  • cathtx
    cathtx Member Posts: 7
    #2
    I never had mono and I had
    I never had mono and I had stage 4A Hodgkins...
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    cathtx said:

    I never had mono and I had
    I never had mono and I had stage 4A Hodgkins...

    No mono here
    Never had mono that I know of. John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    #4
    COBRA666 said:

    No mono here
    Never had mono that I know of. John(FNHL-1-4A-5/10)

    EVB Virus
    Hi Robin,

    I do not have Hodgkins but a very rare B and T cell NHL which is EVB positive. I have never had Mono but most everyone has come into contact with EVB. My Onc said we are first infected by our mothers with their first kiss. Don't know if that is true or not but a good thought. Anyway, me too, I keep asking about the vaccine or treatment to get rid of this virus. Did you know there are trials currently going on with EBV positive Hodgkins patients? If we can get rid of or convert the virus we stand a better chance of not having a recurrance. Hoping for good news on that front as it can't come too soon.

    Best of luck to you,
    Leslie

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