Infection after CAR-T cell therapy

Posted by lmn @lmn, Sep 3, 2023

My husband had CAR-T in October 2022. He has been doing great until recently. He got a terrible infection and I honestly think the doctors were ready to give up on him. He’s doing better now but my question is how can he work to rebuild his immune system?

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@grandpabob

Hello @lmn, my condolences on the passing of your parents. I hope you get the an answer on the IVIG infusions.

I tip my hat to you for advocating for your husband, as patients, we really need that help as medications and anxiety cause a lot of poor thinking on the patients part. Way To Go!

Given I missed your post from a few weeks ago, I echo Colleens question on how things are with you folks?

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Thank you for your condolences. Losing both parents in one week was unbelievably painful. I think Im still processing all of that and dealing with their estate! I responded to Colleen so I won’t repeat it all but we are doing so much better! Thank you for your advice and I will continue to be his advocate! I was a teacher for 30 years so I’m accused of being bossy! Lol
It’s okay!! I think I am!!!
Thank you for checking on us and Im sure I’ll be back on here with questions! I’ll let you know about the infusions. As of now, it’s not happening but we have appointment in a week so I’ll be asking again!!!
Thank you!!!

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@colleenyoung

@lmn, how are you and your husband doing?

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Much better. Thank you. He still has not completely regained strength but each day is better. He gets bummed out but I also remind him he’s 62 not 22!! He’s still on a large Bactrum dosage which I know is to fight infection. Those pills make him feel yukky too. However, I am not complaining! He/we survived a big scare and learned from it!!! Thank you for checking on us!!!

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@lmn

It never was. I never knew about that. I’ve been asking everyday about getting regular infusions when he comes home. He was supposed to be taking Bactrum but he said he was told to stop. I was out of town for part of this because I had to take care of my parents. They both passed away in February this year. The doctor said he wasn’t supposed to stop. Miscommunication apparently. He’s taking it daily in the hospital and I feel like he will continue. I’m here now so I can “take over!” 😂
I’m sure that will go over well. Thanks so much for taking your time to assist us!❤️
Prayers for you!

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Hello @lmn, my condolences on the passing of your parents. I hope you get the an answer on the IVIG infusions.

I tip my hat to you for advocating for your husband, as patients, we really need that help as medications and anxiety cause a lot of poor thinking on the patients part. Way To Go!

Given I missed your post from a few weeks ago, I echo Colleens question on how things are with you folks?

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@lmn

It never was. I never knew about that. I’ve been asking everyday about getting regular infusions when he comes home. He was supposed to be taking Bactrum but he said he was told to stop. I was out of town for part of this because I had to take care of my parents. They both passed away in February this year. The doctor said he wasn’t supposed to stop. Miscommunication apparently. He’s taking it daily in the hospital and I feel like he will continue. I’m here now so I can “take over!” 😂
I’m sure that will go over well. Thanks so much for taking your time to assist us!❤️
Prayers for you!

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@lmn, how are you and your husband doing?

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It never was. I never knew about that. I’ve been asking everyday about getting regular infusions when he comes home. He was supposed to be taking Bactrum but he said he was told to stop. I was out of town for part of this because I had to take care of my parents. They both passed away in February this year. The doctor said he wasn’t supposed to stop. Miscommunication apparently. He’s taking it daily in the hospital and I feel like he will continue. I’m here now so I can “take over!” 😂
I’m sure that will go over well. Thanks so much for taking your time to assist us!❤️
Prayers for you!

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Hello @lmn, regular IVIG infusions were a part of my post treatments plan initially, then stopped when there was higher need for others.

Was this ever a part of your husbands post treatment plan?

I am just curious as the post treatment plan seems vary a bit by treatment centres.

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@lmn

Thank you! He is still in the hospital. He’s been there about 10 days. Hopefully coming home soon. He does not receive regular infusions but I asked about them since reading this forum. I also asked the doctor if we could help his immune system and she said exactly same thing you did! I’ll admit I was kind of caught off guard by this infection. I feel so much more informed now between the doctors and this forum. I think he will be retiring soon due to this which I’m really happy about. He works at a port with lots of people/ships and I always felt this was unsafe!!! Our eyes have truly been opened!! Thank you and continued blessings!

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So glad to hear your husband is on the mend and should be home soon. I agree that this forum can be very helpful when people can share their experiences with others. I get a lot of second looks and such when I am the only person wearing a mask for instance, I take comfort in knowing I am doing the correct thing to protect myself, no different than wearing a pair safety boots when on the job site.

Do take care.

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@grandpabob

Hello @lmn - For me, IVIG infusions helped to bring up my immune system though it always waned over time. Unfortunately, I no longer receive them as I have been fortunate not to become infected with anything to this point, I had Car T in 2018. To help myself to fend off infection, I am careful to insure I have a well balanced diet. I am still extremely careful when in public and wear a top quality N95 mask when in high contact settings like shopping malls and such and continue to wash my hands often. I have not found a magic method to bring my IGG levels up without the infusions, hopefully someone else on this platform has some ideas to add.

I am glad to hear your husband made it through this infection.

How long did it take to clear the infection?
Does he regularly receive IVIG infusions?

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Thank you! He is still in the hospital. He’s been there about 10 days. Hopefully coming home soon. He does not receive regular infusions but I asked about them since reading this forum. I also asked the doctor if we could help his immune system and she said exactly same thing you did! I’ll admit I was kind of caught off guard by this infection. I feel so much more informed now between the doctors and this forum. I think he will be retiring soon due to this which I’m really happy about. He works at a port with lots of people/ships and I always felt this was unsafe!!! Our eyes have truly been opened!! Thank you and continued blessings!

REPLY

Hello @lmn - For me, IVIG infusions helped to bring up my immune system though it always waned over time. Unfortunately, I no longer receive them as I have been fortunate not to become infected with anything to this point, I had Car T in 2018. To help myself to fend off infection, I am careful to insure I have a well balanced diet. I am still extremely careful when in public and wear a top quality N95 mask when in high contact settings like shopping malls and such and continue to wash my hands often. I have not found a magic method to bring my IGG levels up without the infusions, hopefully someone else on this platform has some ideas to add.

I am glad to hear your husband made it through this infection.

How long did it take to clear the infection?
Does he regularly receive IVIG infusions?

REPLY
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