Hello @taichung0812 - I hope someone on Mayo Clinic Connect can help you with your specific questions I too was treated for Non Hodgkins Lymphoma (No Richters however) and exhausted several treatments before Car T was used. Though I did not have the Richter’s factor, I would be happy to share my experience with you if you see fit, feel free to ask questions and I will answer them if I am able.
Have a safe day!
Bob
How is your husband doing? Is Rich in T-Cell Rich B-Cell non-Hodgkin Lymphoma so called Richter's Transformation? I have been looking for patients with Richter's but could not find any. I'm in remission for both CLL and Richter's. High risk for Relapse. Plan to try CAR-T if relapse. Would love to contact you if possible.
Thanks!
@taichung0812, I'd like to add my welcome. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend not sharing personal contact information.
As you can see, by posting here you'll benefit from the knowledge and experience of many members, including @grandpabob@judyhelensmith2022@kevin_153@berdyaev11@smokie and others.
Hello @umma2022 - Welcome to Mayo Clinic Connect. That news must be very exciting for you and your family. Mayo Clinic Connect is a space where you can ask questions of members who have had similar experiences that your mom and family will possibly encounter.
How is your mom feeling about taking this next adventure in her fight against cancer?
How are you feeling?
Please continue to reach out, I am sure the Mayo Connect Community can offer some help.
Had the procedure 6 years ago and relapsed 9 months later. Speaking of cell collection, I had a Hickman catheter surgically implanted in my chest because the veins in my arms couldn’t be used. Believe it or not the device failed the day of cell extraction. Fortunately I had great nurses who were able to extract enough cells through my dried up arm veins. I had no cytokine release problems after the procedure but I believe a terrible reaction to the chemo before the re-engineered cells were reinserted. In hospital for 20 days instead of 10 because my peripheral neuropathy was so bad. After the relapse I found Keytruda a checkpoint inhibitor as my last resort. Merck gave me the drug for free as it was not approved by the FDA as a mercy case. Five years later I am obviously here. Oncologist feels the Re-engineered cells in combo with the checkpoint inhibitor Keytruda gave me more time. Keytruda overstimulated my immune system and is attacking healthy cells causing all kinds of problems in my body. Cytokine release is very common. In this case believe it or not is good. If you don’t have problems like Bob mentioned, the treatment didn’t work and that was me. I think my oncologist knew I would eventually relapse but didn’t mention it as she couldn’t be sure. Anyone with opportunity to get CAR should go for it. There are patients 10 years in. Immunotherapy right now is the gold standard for people like us who were failed by RCHOP.
Had the procedure 6 years ago and relapsed 9 months later. Speaking of cell collection, I had a Hickman catheter surgically implanted in my chest because the veins in my arms couldn’t be used. Believe it or not the device failed the day of cell extraction. Fortunately I had great nurses who were able to extract enough cells through my dried up arm veins. I had no cytokine release problems after the procedure but I believe a terrible reaction to the chemo before the re-engineered cells were reinserted. In hospital for 20 days instead of 10 because my peripheral neuropathy was so bad. After the relapse I found Keytruda a checkpoint inhibitor as my last resort. Merck gave me the drug for free as it was not approved by the FDA as a mercy case. Five years later I am obviously here. Oncologist feels the Re-engineered cells in combo with the checkpoint inhibitor Keytruda gave me more time. Keytruda overstimulated my immune system and is attacking healthy cells causing all kinds of problems in my body. Cytokine release is very common. In this case believe it or not is good. If you don’t have problems like Bob mentioned, the treatment didn’t work and that was me. I think my oncologist knew I would eventually relapse but didn’t mention it as she couldn’t be sure. Anyone with opportunity to get CAR should go for it. There are patients 10 years in. Immunotherapy right now is the gold standard for people like us who were failed by RCHOP.
Hello @nodunk - I agree with you totally that if Car - T is an option it should be seriously considered as it does work very well in many cases. It is very unfortunate that it is not 100% effective in all cases. It seems like the human body accepts and rejects different things randomly at times, kind of like plants in the garden, no two are 100% alike.
I see in a previous post of yours where you were asking some questions on neuropathy, are you getting some feedback that is helping you find some answers?
I have neuropathy in my feet which I will have for the duration I am told, this, thanks to a side effect of the Chemo. In my case a very small price to pay for which I am grateful.
Umma, I'd like to add my welcome. How is your mom doing? Are you her main caregiver during the CAR-T therapy? Any questions as you prepare to start treatment?
Umma, I'd like to add my welcome. How is your mom doing? Are you her main caregiver during the CAR-T therapy? Any questions as you prepare to start treatment?
She is weak, so we have to ask for pain killer from primary to get better sleep and good appetite. Since her limpthnod is big in stomach are she can eat just a little bit.
We, the family ,worry to she has no energy on procedures. Praying tide for good fight. Thanks you so much for welcome me, yes I am the main care giver.
She is weak, so we have to ask for pain killer from primary to get better sleep and good appetite. Since her limpthnod is big in stomach are she can eat just a little bit.
We, the family ,worry to she has no energy on procedures. Praying tide for good fight. Thanks you so much for welcome me, yes I am the main care giver.
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Hello @taichung0812 - I hope someone on Mayo Clinic Connect can help you with your specific questions I too was treated for Non Hodgkins Lymphoma (No Richters however) and exhausted several treatments before Car T was used. Though I did not have the Richter’s factor, I would be happy to share my experience with you if you see fit, feel free to ask questions and I will answer them if I am able.
Have a safe day!
Bob
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3 Reactions@taichung0812, I'd like to add my welcome. You'll notice that I removed your personal phone number. Connect is a public forum. We recommend not sharing personal contact information.
As you can see, by posting here you'll benefit from the knowledge and experience of many members, including @grandpabob @judyhelensmith2022 @kevin_153 @berdyaev11 @smokie and others.
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1 ReactionYes, my mom has schedul for October 7th to start collect the cell.
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1 ReactionHello @umma2022 - Welcome to Mayo Clinic Connect. That news must be very exciting for you and your family. Mayo Clinic Connect is a space where you can ask questions of members who have had similar experiences that your mom and family will possibly encounter.
How is your mom feeling about taking this next adventure in her fight against cancer?
How are you feeling?
Please continue to reach out, I am sure the Mayo Connect Community can offer some help.
Bob
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Helpful -
Hug
4 ReactionsHad the procedure 6 years ago and relapsed 9 months later. Speaking of cell collection, I had a Hickman catheter surgically implanted in my chest because the veins in my arms couldn’t be used. Believe it or not the device failed the day of cell extraction. Fortunately I had great nurses who were able to extract enough cells through my dried up arm veins. I had no cytokine release problems after the procedure but I believe a terrible reaction to the chemo before the re-engineered cells were reinserted. In hospital for 20 days instead of 10 because my peripheral neuropathy was so bad. After the relapse I found Keytruda a checkpoint inhibitor as my last resort. Merck gave me the drug for free as it was not approved by the FDA as a mercy case. Five years later I am obviously here. Oncologist feels the Re-engineered cells in combo with the checkpoint inhibitor Keytruda gave me more time. Keytruda overstimulated my immune system and is attacking healthy cells causing all kinds of problems in my body. Cytokine release is very common. In this case believe it or not is good. If you don’t have problems like Bob mentioned, the treatment didn’t work and that was me. I think my oncologist knew I would eventually relapse but didn’t mention it as she couldn’t be sure. Anyone with opportunity to get CAR should go for it. There are patients 10 years in. Immunotherapy right now is the gold standard for people like us who were failed by RCHOP.
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Like -
Helpful -
Hug
1 ReactionHello @nodunk - I agree with you totally that if Car - T is an option it should be seriously considered as it does work very well in many cases. It is very unfortunate that it is not 100% effective in all cases. It seems like the human body accepts and rejects different things randomly at times, kind of like plants in the garden, no two are 100% alike.
I see in a previous post of yours where you were asking some questions on neuropathy, are you getting some feedback that is helping you find some answers?
I have neuropathy in my feet which I will have for the duration I am told, this, thanks to a side effect of the Chemo. In my case a very small price to pay for which I am grateful.
Take care and fingers crossed for you.
Bob
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1 ReactionUmma, I'd like to add my welcome. How is your mom doing? Are you her main caregiver during the CAR-T therapy? Any questions as you prepare to start treatment?
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Helpful -
Hug
1 ReactionShe is weak, so we have to ask for pain killer from primary to get better sleep and good appetite. Since her limpthnod is big in stomach are she can eat just a little bit.
We, the family ,worry to she has no energy on procedures. Praying tide for good fight. Thanks you so much for welcome me, yes I am the main care giver.
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Like -
Helpful -
Hug
1 ReactionThinking of you tonight, Umma. I hope everything went as hoped and planned today. Sleep well.
Hello Umma, I hope the collection of the T Cells went well for your mother.
When is the scheduled date to infuse the engineered T- Cells? I hope you are all doing well at this time.
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