Non Hodgkin's Lymphoma Friends
1,009 members • 441 posts

Once again, sad relapse

Sad news 😢 I was in remission only a few months for systematic NHL in 2015 after 6 rounds of R-EPOCH, then I had a recurrence in my Central nervous system once the NHL had crossed the blood brain barrier. I then had 8 rounds of Methotrexate/Rituxin prior to a stem cell transplant in Nov 2016 (the chemo to wipe out my immune system was brutal and I was hospitalized for a month and have been recovering slowly since then). However, around last month, I started experiencing similar systems as to what I experienced last year, extreme fatigue, dizziness, balance issues, lack of appetite, etc. My husband insisted that I get into my primary care doctor as the local cancer center last year completely dropped the ball on me and my regular doctor is the one who got me the MRI that found the tumor/lesions on my brain. Well, same thing happened this week. Now I am left with full brain radiation and all those side effects😥 Will try to keep updated.

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I'm sorry to hear this.

Have you considered looking at stem cell transplant by a donor.

Gamma knife or proton beam for the brain lesions??

Or if the lesions are blood related then the new immune system should in theory get rid of them for you.

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25 rounds of full brain radiation complete. Follow up MRI is supposed to be six weeks out but am having to juggle that with my radiation oncologist not being available then and must also get 2nd round of post transplant immunizations scheduled which are overdue, but my transplant doctor said they wouldn't be as effective until,I recovered from the radiation. And I am telling you, the fatigue that comes post transplant is no joke😔

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Consider a CAR-T trial. My wife who has aggressive follicular lymphoma received an NIH CAR-T infusion in March 2016 and has been in complete remission for 15 months, and counting!

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Such sad news for you, Jenn. While a relapse is discouraging, please don't give up. There will be options for you to explore which will hopefully provide a more favourable result. Try to keep a positive attitude.

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Of the choice of donor transplant or t-car. Then go t car all the way.

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Im do sorry to hear this

Wishing you well x

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Sending prayers for a speedy recovery.

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Just stay strong, although that's not easy. I had a transplant in 1999, relapsed in 2005, but now in remission ever since.. The transplant was exhausting, I know. Mine was done at MUSC and had family and friends taking turns helping.

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Sending prayers for a speedy recovery.

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So sorry to hear of your relapse, Jenn. Do seek out some of these new trials. They seem to be working for some people. Certainly worth exploring. Be well.

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I'm so sorry you relapsed, you sound like a strong person. I hope to have half the strength some of you have had. I can't believe some drs are so uncaring to not check on you, not get us in, take their time. I'm praying for all, my thoughts are with you. Stay strong, we are all fighting right beside you. GOD bless you, please keep us updated.

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Thank you much💗 This has been a comforting place to come, for who else can truly understand what trials we go through? The support, advice and caring here is tremendous. I am very grateful to have all of you together in this with me. We can do this as a team💗💪🏻

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