Follicular Lymphoma and Lupus

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Mariele 85
Mariele 85 Member Posts: 3
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Are there any other members with this combo? I just finished my 1st round of B&R and have a mixed bag of effects. I have no idea what is normal any more and am feeling overwhelmed. Any perspective would be greatly appreciate.

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 CSN Member Posts: 3,830 Member
    #2
    Wow

    Mariele,

    My cousin has had lupus over 25 years. By itself, a serious challange.

    Follicular lymphoma is one of the most common. Very "indolent,' or slow-moving; non-aggressive.  But it is a life-long trial, despite being quite controllable.  How this interacts with lupus I have no idea, but hope someone contributes insight.  My thought is that it is very "doable,' however. You will get through this with good quality of life.  Although you are much younger, I look at your picture and hear Aretha Franklin singing...a wonderful thing.

    max

  • ShadyGuy
    ShadyGuy CSN Member Posts: 945 Member
    #3
    Rituxan

    Rituxan treats both lupus and b-cell lymphomas. Be sure it is part of your regimen.

  • Mariele 85
    Mariele 85 Member Posts: 3
    #4
    ShadyGuy said:

    Rituxan

    Rituxan treats both lupus and b-cell lymphomas. Be sure it is part of your regimen.

    It is

    Rituxan is part of my treatment. Hoping to deal with both issues.

  • Mariele 85
    Mariele 85 Member Posts: 3
    #5
    Max Former Hodgkins Stage 3 said:

    Wow

    Mariele,

    My cousin has had lupus over 25 years. By itself, a serious challange.

    Follicular lymphoma is one of the most common. Very "indolent,' or slow-moving; non-aggressive.  But it is a life-long trial, despite being quite controllable.  How this interacts with lupus I have no idea, but hope someone contributes insight.  My thought is that it is very "doable,' however. You will get through this with good quality of life.  Although you are much younger, I look at your picture and hear Aretha Franklin singing...a wonderful thing.

    max

    Thanks!

    The lupus creates a bit of a wild card. Hoping the treatment puts them both to sleep. Not quite Ms. Aretha, but I hope to get back to performing once treatment is over.

  • po18guy
    po18guy CSN Member Posts: 1,539 Member
    #6
    Transplant?

    It seems that, short of a major advancement in CAR-T technology, a stem cell transplant might be a consideration for you. Lupus, being autoimmune, is essentialy cured only by replacing your immune system with someone else's. That is another world, though. Follicular is not the target of transplant that other forms of lymphoma are, but I do know of at least one follicular patient who has had a transplant. It would be a risky "two fer" if done, but you are bearing a heavy cross as is. 

    If you are being seen at a National Cancer Institute designated comprehensive cancer center, great! If not, I would strongly suggest that you consult at one, as they employ the best and brightest, perform research and conduct clinical trials. Find the nearest one here: https://www.cancer.gov/research/nci-role/cancer-centers/find

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