Did you have any energy problems. I am so tired I can hardly get out of bed. I’m trying to exercise go to PT twice a week it’s just not coming on for me.
Hello @peggybyses, great job attempting to go to PT twice a week. I found it took at least 18 months to get back to some semblance of what was previously normal. (Whatever that is) Given how absolutely terrible I felt prior to having Car T, I do not necessarily account the long recovery time to the Car T, I suspect for me, all the chemo and radiation therapy prior to Car T had a lot to do with that as well.
I found that energy and strength came back slowly, I tried to eat healthy, being patient with my body was the key.
Be patient, your strength and energy should return.
Even if you are currently struggling with PT, are you happy with your day to day progress?
2 1/2 months is not a long time to recover. I was tired for quite awhile but each week got a little better. You will be back to feeling great soon. Don’t rush it.
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?
Hello @ronkampner , I am glad to hear you are doing well. Like you, my immune system is extremely low, as a result I am very careful around people who are not feeling well. I have not experienced mouth sores after Car T, interestingly enough I did not have them during my many rounds of chemo, which I am eternally grateful for.
Do you receive more than one IVIG infusion to boost your immune system or is it a series of a few?
Hello @annberkowitz, like you I still get leg cramps, kind of makes a person wonder what that is all about but, kind of minor in the grand scheme of things.
Like you I try to hydrate more when I start getting cramps. I also feel that when I practice Yoga that helps a lot.
Hello @ronkampner , I am glad to hear you are doing well. Like you, my immune system is extremely low, as a result I am very careful around people who are not feeling well. I have not experienced mouth sores after Car T, interestingly enough I did not have them during my many rounds of chemo, which I am eternally grateful for.
Do you receive more than one IVIG infusion to boost your immune system or is it a series of a few?
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.
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.
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. 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?
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.
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Hello @peggybyses, great job attempting to go to PT twice a week. I found it took at least 18 months to get back to some semblance of what was previously normal. (Whatever that is) Given how absolutely terrible I felt prior to having Car T, I do not necessarily account the long recovery time to the Car T, I suspect for me, all the chemo and radiation therapy prior to Car T had a lot to do with that as well.
I found that energy and strength came back slowly, I tried to eat healthy, being patient with my body was the key.
Be patient, your strength and energy should return.
Even if you are currently struggling with PT, are you happy with your day to day progress?
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4 ReactionsThank you
I still have leg cramps. Someone suggested I try tonic water with quinine. It actually helps and I get a better nights sleep.
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1 ReactionHello @ronkampner , I am glad to hear you are doing well. Like you, my immune system is extremely low, as a result I am very careful around people who are not feeling well. I have not experienced mouth sores after Car T, interestingly enough I did not have them during my many rounds of chemo, which I am eternally grateful for.
Do you receive more than one IVIG infusion to boost your immune system or is it a series of a few?
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3 ReactionsHello @annberkowitz, like you I still get leg cramps, kind of makes a person wonder what that is all about but, kind of minor in the grand scheme of things.
Like you I try to hydrate more when I start getting cramps. I also feel that when I practice Yoga that helps a lot.
Have you tried stretching exercises?
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3 ReactionsHello 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.
-
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Helpful -
Hug
1 ReactionHi 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.
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.
@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?
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.
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