CAR-T questions: Hello, I am new to... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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CAR-T questions

AZ426MoparLover profile image

Hello, I am new to this community and I am fighting cancer, non Hoskins lymphoma. I have a great Oncologist at Ironwood Cancer and research center and he has recommended CAR-T treatment as one option. I am trying to research real life experience for side effects and costs commonly associated with this treatment along with long lasting changes to your body. Any help will be appreciated. I have an appointment on 11/22/2021 with MD Anderson in Gilbert Arizona. Thank you for your help in advance.

6 Replies

I have Peripheral T-Cell Lymphoma .My CHOP chemo failed.

I will follow.

Hey Mopar,I was diagnosed with MCL (which is an NHL) just over a year ago.

How did it go today?

Hi Nova, Well it went as well as could be expected I think. It was decided that CAR-T was not a viable treatment for me at this time. The path chosen is Chemotherapy therapy called Monjovi and also taking the chemo pill Revlimid. This treatment will begin December 6, 2021. Hopefully, it will work and I will be in remission when all is done.

Greetings, I live on the west side of Phoenix and was diagnosed with stage 4 NHL(DLBCL) last year around this timeframe. I received the R-CHOP chemo therapy which consisted of 6 sessions three weeks apart (Honor Health Virginia G. Piper Cancer). I had a few tumors all over my body including one in my heart. I was not given the CAR-T option, it does appear there are many side effects associated with this type of treatment. Here is a website with more information:

cancer.org/treatment/treatm...

I do wish you complete remission as NHL is very treatable with chemo. I am in remission now and still get the occasional PET scans. I did have some radiation therapy targeting my spleen for three weeks post chemo, but the treatment was painless and had zero side effects. My only side effects I noticed from chemo was VCR-induced peripheral neuropathy which I still experience today. Also, my scalp hair came back white, lol, but its back to normal now.

If you have any questions you can reach out to me any time.

Hi SVEN63, Thank you very much for your reply. Well it went as well as could be expected I think. It was decided that CAR-T was not a viable treatment for me at this time. The path chosen is Chemotherapy therapy called Monjuvi and also taking the chemo pill Revlimid. This treatment will begin December 6, 2021. Hopefully, it will work and I will be in remission when all is done.

Best of luck and throwing prayers toward you for a speedy recovery. Please keep in touch and let us know how you're doing. God Bless.

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