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Follicular Lymphoma and Lupus
Mariele 85
Posts: 3
Joined: Apr 2018
Apr 29, 2018 - 10:27 pm
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.
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.
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.
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
Joined: May 2012
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
Joined: Apr 2018
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.
Joined: Jan 2017
Rituxan
Rituxan treats both lupus and b-cell lymphomas. Be sure it is part of your regimen.
Joined: Apr 2018
It is
Rituxan is part of my treatment. Hoping to deal with both issues.
Joined: Nov 2011
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