Did anybody on here undergo car-t therapy
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Oh so true Peggy. Glad to hear you are working at PT. I found it beneficial to eat super healthy when I was trying to regain strength and activity. Good luck with the new program.
What do you find the toughest?
Hello @peggybyses – that is not long ago, how are you feeling?
I found that several months after therapy it was a real learning curve for my body to adjust while it mended.
So glad to hear you were able to receive this therapy.
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It has been tough. As someone said to me “you don’t know what tired is”. So true.
I have worked hard, physical therapy 2 a week, just starting a new program to go with that at hospital for cancer patients
Yes, I’m June 2023
Hi Ron, thank you for the information. I am so glad your grandkids are dragging you out to the golf course.
How are you shooting? Have fun.
Well Bob, I’m shooting my regular 95-105. My 11 year old grandson beats me 70% of the time. My fault, I started him when he was 8. Very proud of him. 😃
Bob, you are lucky that your IGG hovers around 400. Mine will keep dropping without the treatments Keep doing what works because that’s all we have. I am happy in my life right now and intend to stay that way. I have grandkids that insist I play golf with them. I have to stay this way. Haha. You too.
Yes my sister did for Non-Hodgkins B Cell and it failed unfortunately..She had no side effects with the treatment and it was given very late stage when all else had failed and no treatment for 6 months..I just feel they waited tooooo long to give it to JoAnn and too much lymphoma so t cells got exhausted. I wish you the very best and it certaintly works for some..just failed my sister.
Hi. I underwent CarT therapy in December 2020 for Mantle Cell Lymphoma which is a B cell non Hodgkin's. I am still in remission and my scans are now once a year. They draw blood 3 times a year and all has been good. My immune system has not completely recovered so I occasionally need an IVIG infusion to boost my system. No big deal. I feel great. I would like to ask if anyone has experienced mouth sores intermittently after CarT?
@ronkampner, here is a discussion about mouth sores that might be helpful, not specific to CAR-T necessarily.
– Mouth Sores from chemo: When do they go away?
@peggybyses, I think you got a lot of good tips from fellow CAR-T members about how long fatigue might last. In the Cancer: Managing Symptoms support group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/), there are also additional tips about coping with fatigue, for example:
– Fatigue and cancer treatment: How do you cope? https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/
How are you doing today?
Interesting question on the IVIG. I get the treatments at two different hospitals because I travel between two areas. In the Boston area they infuse me one at a time. When my IGG falls below 400, I get the infusion. That one infusion will bring me up to about 650. At the Florida hospital they give me a series of 3 infusions …. one a month for three months. That method brings me up to about 1300, which is a really good solid number. But gradually the numbers decline and I need to do it all over again. I think both methods work and are based on certain philosophical differences. I feel lucky to be able to get the treatments. .Where would we be without them.
Hi Ron, to add to what you are saying, I will add a third process, in the hospital that treats me, their approach to the IVIG infusions is; as long as you are not getting infections, we will not treat you. My levels hover just below 400, I have not had an infusion in three years. I am super cautious around people and never knowingly have contact with people that are sick. So far that has worked for me. I am super happy for you that you get the treatments, I am envious to say the least, that aside, I am even more thankful that I was able to undergo the Car T treatment, it has added five wonderful years to my life and hoping for many more.
Thanks for your response.
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