NH Lymphoma treatments: I have NH... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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NH Lymphoma treatments

thunderroad70 profile image

I have NH Lymphoma and have had chemotherapy. Currently, I am on a bi-specific antibody clinical trial at Dana Farber Cancer Institute. I have some strange reactions including numbness in the arm and would like to connect to anyone with synthetic antibody, Car-T, or other new technology treatments.

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I have cutaneous NHL. I’ve had chemo. Failed.

Good luck.

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thunderroad70 in reply to

Thanks! I have follicular lymphoma and have gone through chemo. That failed but the current clinical drug trial is working...I am in temporary remission. I am having side effects from the treatment. The treatment is so new that the doctors have no experience with side effects, so looking to connect with anyone having similar treatment. Kind regards

Hi there I’m so pleased that trial appears to be working. I had NH Follicular Lymphoma and had two Regimens of chemo/immunotherapy which failed. I was lucky enough to get accepted for CAR-T Cell which has put me in remission. All the treatment has left me with peripheral neuropathy and my existing arthritis and sciatica has been exacerbated. That’s not ideal but I feel lucky to be alive as things were looking bleak. I wish you the best of luck with your treatment. I would be interested to know why you went into this clinical trial and not CAR-T?

Thanks Charlie. Car-T was not available to me. However, the bispecific antibody trial I am on works like Car-T. The synthetic antibody attaches to a cancer cell and the T cell then kills the cancer cell. My side effects are numbness and pain in my right arm when sleeping. I also have some sciatica like symptoms but they were there before the treatment. I think those symptoms were from lymphoma.

That’s really interesting that you say that because I have had sciatica symptoms for 4 to 5 years now and they are worse than ever after my treatment. I think I mentioned I have peripheral neuropathy in left foot too. So basically I have numbness in both my feet with is very uncomfortable and distracting. I have heard about the bispecific treatment and that’s what I would have had if CAR-T hadn’t worked. What makes you think that Lymphoma is linked to sciatica symptoms. Would be really interested to receive any links to material that discusses this.

My primary care physician first diagnosed my symptoms as sciatica and it was (fortunately) determined by my oncologist that it was not sciatica...it was neuropathy from the lymphoma. That is why I associate neuropathy with Lymphoma. I am having an infusion as I write and did meet with my oncologist this morning about the numbness and pain in my right arm. They don't seem to think it is a side effect as no one else in the trial has reported it. I am, however, one of the first two people out of 100 in the US on the medication...so I am paving the way a bit. they are wondering if I have a pinched nerve. That doesn't seem like an accurate diagnosis to me but I will be getting an MRI to help find the cause. They are having me start on gabapentin at night to see if it reduces the pain and helps me sleep. Thanks!

Thank you. I wish you all the luck in the world with the treatment and keeping everything crossed for you 🤞🤞. Take care

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