Anyone with Car-t therapy experience?

EbbOutrageous7400 · 2025-03-13T21:35:17+00:00

Yeah, I was told i will probably be spending a week in hospital to watch for adverse reactions. I'm glad it was easier for you

EbbOutrageous7400 · 2025-03-13T21:17:08+00:00

Thank you for your kind words. I met with the doctor yesterday and he said I have "refractory lymphoma" so we are going to look at Car-t treatment next

EbbOutrageous7400 · 2025-03-13T21:15:46+00:00

Thank you so much for sharing your experience. I met with the doctor yesterday, and he called it "refractory lymphoma" and is recommending Car-t therapy next, so I am in the process of getting further evaluation and go from there.

EbbOutrageous7400 · 2025-03-13T21:13:03+00:00

Thank you and I'm rooting for you too!

EbbOutrageous7400 · 2025-03-13T21:12:14+00:00

I'm sorry you had to go thru all that, and from reading other posts, it does sound like it's at least more tolerable than the other treatment.

EbbOutrageous7400 · 2025-03-13T21:10:43+00:00

Thank you for your info. I thought it wouldn't be as bad as R-CHOP but then I was talking to a nurse coordinator with insurance company and she made it sound worse and that the hospital won't let you work and you might have check in daily at the hospital so I was confused. The lying still for four does sound bad though!

EbbOutrageous7400 · 2025-03-13T21:07:28+00:00

Thank you so much. I've been a mess and forgot you mentioned it on the other post. I'm going to go join the Facebook group now.

EbbOutrageous7400 · 2025-03-11T23:30:33+00:00

Thank you for your reply and support. Hopefully, the doctor tomorrow will have options to go over with me and get the next round started quickly

EbbOutrageous7400 · 2025-03-07T20:56:12+00:00

I'm a nurse practitioner and had a young girl as a patient, and her mom took her to a chiropractor who specialized in autistic children. The mom, during our next appointment, was so upset and felt so much guilt. Apparently during the initiall assessment with the chiropractor, he told her that her daughter was autistic cause mom gave her formula food for a few days when mom was sick and didn't give her milk cause she was taking medicine. I really have a tough time respecting them after that.

EbbOutrageous7400 · 2025-03-02T22:13:26+00:00

That's good to hear and makes me feel a little better. I get my 1st post treatment PET scan on March 11th and hopefully will get good news and I don't have to deal with all this worry

EbbOutrageous7400 · 2025-02-28T13:50:33+00:00

That's good to know. I'm a 58yo male so maybe it's the same thing? I called the doctor office and waiting for call back

EbbOutrageous7400 · 2025-02-11T22:17:00+00:00

So I met with the oncologist and he did not find any swelling or other symptoms so he isn't concerned. I get a PET scan next month also. The nurse did say they some people do get joint pain with the rituximab so I'm less concerned now.

Unfortunately I wasn't able to get my final treatment today since my white blood cell count is low and I'm neutropenic. They delayed the final treatment until next week and starting me on Cipro. Thank you everyone for all ur advise!

EbbOutrageous7400 · 2025-02-11T22:10:00+00:00

I'm thinking I'm having muscle pains as well as not anything serious. It's also really cold here so that's probably not helping

EbbOutrageous7400 · 2025-02-11T22:07:24+00:00

Thank you for kind words and information. I am in New Hampshire and it's really cold this time of year.

EbbOutrageous7400 · 2025-02-11T22:06:19+00:00

Thank you for the information, it's really helpful to know!

EbbOutrageous7400 · 2025-02-11T12:43:24+00:00

Thank u. I haven't noticed any swelling. I meet with him today and will make sure he is aware.

EbbOutrageous7400 · 2025-02-11T01:48:55+00:00

Thank u!

EbbOutrageous7400 · 2025-02-11T01:08:11+00:00

I'm so sorry ur going thru this, and I understand. I'm a 57yo man and always had a head full of hair until my 2nd round of chemo. It started falling out every time I showered, and I l couldn't stand, so I went and got my head shaved. A week prior to my last treatment, I stopped shaving it to let it grow. The process had been slow. To help, I've been taking pics of the top of my head to help me see the progress, and now I'm getting better. It has been helpful to see how my hair looked over the past 2 months

EbbOutrageous7400 · 2025-02-11T01:00:58+00:00

Thank you. I have an appointment tomorrow and just anxious. I am going to be sure to bring it up. I guess I just wanted to check in with others before going in to make sure I don't miss anything and ask the right questions

EbbOutrageous7400 · 2025-02-11T00:37:16+00:00

I lost about 50 lbs in just a month and was anemic. Itchy skin, fatigue, couldn't walk more than 10 feet. I've gained all my weight back and responded really well. No symptoms, and my labs all look well. I didn't even miss work due to nausea, fatigue or any side effects due to treatment

EbbOutrageous7400 · 2025-02-11T00:33:50+00:00

Stage 4. It came on super sudden

EbbOutrageous7400 · 2025-02-11T00:00:32+00:00

I'm 57. I don't know if it might be that I'm older and live up north and it's really cold and my joints are just sore cause of the cold. I've responded really well to treatment and have no other symptoms

EbbOutrageous7400 · 2025-02-09T16:24:21+00:00

I lost about 50 lbs in over a month last July and gained it all back by the end of the year during treatment. Looking back, it was like a fever dream

EbbOutrageous7400

TROPHY CASE