Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob
Hello Bob - my appetite was only bad while I was in hospital - I lost 10 kgs in 4 weeks. I was also put on a high protein, high energy diet & I still use Sustagen as a meal replacement from time to time.
I was prepped for icu but pulled through at the last minute. I’d spent my first months of treatment in Darwin (1000 kilometres) at the top end of the Northern Territory and then because nothing worked on my NHL - DLBCL I was referred to Melbourne and the Peter MacCallum cancer centre in January this year.
I live in Alice Springs, Central Australia so a long way to travel both times. I hadn’t lived in my home for nearly two years 😢
Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)
Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob
Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)
Hello, Judy Congratulations on your CAR-T transplant. You’re on the cutting edge of science. It’s fascinating, isn’t it? (More so if you didn’t have to go through that!). Having had the procedure in February, you’re still pretty early in your recovery so I hope you start feeling much better over the next several months. It takes time to rebuild your body and your life after the disease, the rounds of chemo and your reaction to the CAR-T therapy.
I’m so happy to hear you’re in remission. What an amazing feeling that is. A reward for all you’ve gone through this year!
I had AML and we’d talked about CAR-T but I wasn’t eligible for that therapy so I had a bone marrow transplant. May I ask what your follow up treatment is like? Are you on any medications?
Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)
Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?
@cindycoult, Welcome to Mayo Clinic Connect Cindy, I see this is your first post, there is a large group on Mayo Connect that is willing to help answer your questions and are willing to share their experiences.
I have added a link to the blood cancer group on connect below, you may find this group has more answers to your questions, feel free to re-post there as well. https://connect.mayoclinic.org/group/blood-cancers-disorders/
How long have you had the skin sore?
Hi, my name is Kevin. I have Follicular B-cell nonHodgkin's lymphoma. I am currently receiving TTI-622 by Trillium Therapeutics, an experimental drug clinical trial. They are trying to extend me into the Allogene Car T Cell trial on August 11, 2019. I am going through the Colorado Blood Cancer Institute in Denver. I have had several treatments since 2015, including R-CHOP and RICE chemotherapy and an autologous stem cell transplant (at CBCI). I relapsed from my stem cell transplant within 10 months. Everything seems so surreal to me. I am scared and feel somewhat lonely. It helps reading about other people's journey on this site. This is the first time I have accessed information in this manner. Kevin
Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?
Hello..Hope your husband continues to get better...Can you please tell me which Mayo Clinic location did your husband attend to? I went to Jacksonville once and it did not go so well.
Hello @mena2020. Colleen shared some links with you with more information on CAR-T cell therapy. FDA approved diagnoses that qualify for CAR-T treatment are constantly changing as more sites around the world invest in research and development. As of now, at Mayo Clinic, the FDA approved treatments are available for relapsed, refractory B-cell acute lymphoblastic leukemia and relapsed, refractory B-cell non-Hodgkin's-lymphoma. However, there is a clinical trial for refractory CLL/SLL, but exclusion criteria for clinical trials is often strict, https://www.mayo.edu/research/clinical-trials/cls-20467631. CAR-T is typically used as a last resort treatment when other treatments have failed because it can be an intense treatment.
My diagnosis is CLL/SLL , Hashimoto and Hypogammaglobulinemia. Having frequent infections. I don’t have any treatment yet because the doctor isn't clear if I should begin or not...but Lymphomas are manifesting more aggressively in my case and inflammation episodes cause scary neurological symptoms. Can anyone tell me how do I qualify for Cart T cell therapy or what is the protocol for it? I have extreme allergies and sensitivities to medicines, and everything. I am afraid to take Imbruvica and since the doctor refuses to start me with a lower dose. I react badly to MRIs contrast and even iodine. I am terrified every time they mention any drugs because I could die from medicines reactions...I need guidance on treatment and which doctor I should see aside from my Hematologist to support the immune deficiency (or suspected plasma deficiency) Where do I get this treatment and if anyone knows a the name of a good doctor ???
Mena, I'm unclear from your posts. Are you a candidate for CAR-T? It is my understanding that CAR-T therapy is currently only approved for B-cell ALL and B-cell non-Hodgkin lymphoma.
Connect
Connect
Like
Helpful
Hug
Hello Bob - my appetite was only bad while I was in hospital - I lost 10 kgs in 4 weeks. I was also put on a high protein, high energy diet & I still use Sustagen as a meal replacement from time to time.
I was prepped for icu but pulled through at the last minute. I’d spent my first months of treatment in Darwin (1000 kilometres) at the top end of the Northern Territory and then because nothing worked on my NHL - DLBCL I was referred to Melbourne and the Peter MacCallum cancer centre in January this year.
I live in Alice Springs, Central Australia so a long way to travel both times. I hadn’t lived in my home for nearly two years 😢
-
Like -
Helpful -
Hug
2 ReactionsHello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob
-
Like -
Helpful -
Hug
2 ReactionsHello, Judy Congratulations on your CAR-T transplant. You’re on the cutting edge of science. It’s fascinating, isn’t it? (More so if you didn’t have to go through that!). Having had the procedure in February, you’re still pretty early in your recovery so I hope you start feeling much better over the next several months. It takes time to rebuild your body and your life after the disease, the rounds of chemo and your reaction to the CAR-T therapy.
I’m so happy to hear you’re in remission. What an amazing feeling that is. A reward for all you’ve gone through this year!
I had AML and we’d talked about CAR-T but I wasn’t eligible for that therapy so I had a bone marrow transplant. May I ask what your follow up treatment is like? Are you on any medications?
Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)
-
Like -
Helpful -
Hug
1 ReactionHi Cindy, I add my welcome. How are you doing? Do you know what treatment you'll need, if any?
@cindycoult, Welcome to Mayo Clinic Connect Cindy, I see this is your first post, there is a large group on Mayo Connect that is willing to help answer your questions and are willing to share their experiences.
I have added a link to the blood cancer group on connect below, you may find this group has more answers to your questions, feel free to re-post there as well.
https://connect.mayoclinic.org/group/blood-cancers-disorders/
How long have you had the skin sore?
I encourage you to reach out at anytime.
Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?
-
Like -
Helpful -
Hug
1 ReactionRochester.
Hello @mena2020. Colleen shared some links with you with more information on CAR-T cell therapy. FDA approved diagnoses that qualify for CAR-T treatment are constantly changing as more sites around the world invest in research and development. As of now, at Mayo Clinic, the FDA approved treatments are available for relapsed, refractory B-cell acute lymphoblastic leukemia and relapsed, refractory B-cell non-Hodgkin's-lymphoma. However, there is a clinical trial for refractory CLL/SLL, but exclusion criteria for clinical trials is often strict, https://www.mayo.edu/research/clinical-trials/cls-20467631. CAR-T is typically used as a last resort treatment when other treatments have failed because it can be an intense treatment.
Here are a few additional discussions on Connect you may find worth your time reading through and participating in:
- https://connect.mayoclinic.org/discussion/i-have-very-difficult-muscle-twitches-on-imbruvica-any-advice/
- https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/
As Colleen mentioned, has CAR-T been discussed with you? Have you discussed your concerns with your providers about your sensitivity to medications?
Hi @mena2020, welcome Mayo Clinic Connect. Several members of the CAR-T therapy group went to Mayo Clinic for treatment, like @grandpabob @raemark @greta_k @annmillercarr @valerie912 and @cherylbogdan. I'm not sure which location however.
Here is more information about the CAR-T cell therapy program at Mayo Clinic, which includes a list of specialists https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/sections/overview/ovc-20404319
You may also be interested in the Hematology blog, which features several posts about CAR-T https://connect.mayoclinic.org/page/hematology/
This is a good one to start with:
- CAR-T cell Therapy: What is it and what does it treat? https://connect.mayoclinic.org/page/hematology/newsfeed-post/car-t-cell-therapy-what-is-it-and-what-does-it-treat/
Mena, I'm unclear from your posts. Are you a candidate for CAR-T? It is my understanding that CAR-T therapy is currently only approved for B-cell ALL and B-cell non-Hodgkin lymphoma.