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?
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
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?
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.
Hello Bob,
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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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?
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
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1 ReactionHello @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.
Stay safe.
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1 ReactionYes, I’m June 2023
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. 😃
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1 ReactionHi 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.
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1 ReactionYes 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.
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1 Reaction@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?
https://connect.mayoclinic.org/discussion/mouth-sores/
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@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?
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.
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.