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.
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 @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.
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?
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.
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?
I did not have mouth sores. But I’m still not getting my energy back after 2 1/2 months. How long does it take before we get back to normal? I’m just so tired some days it’s everything I can do to get out of bed and make steps help.
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.
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.
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.
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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.
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.
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1 ReactionHello @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 @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 ReactionsI 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 ReactionThank you
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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Like -
Helpful -
Hug
4 Reactions2 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.
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Hug
2 ReactionsI had no energy for about six weeks. The first month was the worst due to low bp. Had to be wheeled to my appointments.
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2 ReactionsDid 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.