CAR-T Cell Therapy: Introduce yourself and connect with others

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

@smokie

Thanks for your answer, Bob. Greg’s Dr said that the Mayo was recommending the vaccine.
So glad that your recovery from shingles was good. Greg got the vaccine- but wish it had been before that terrible bout with shingles.
I thank God every day for the Mayo and CAR T
Cell Theraphy! Take care. Barb

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@smokie – You are welcome Barb. It does appear that the doctors are on the same page with this one. Now we just have to be patient until our brackets queue us up for the vaccine.

I thank the Scientific and Health Care community everyday for Car T as well. A gift for sure.

It has been great hearing from you again, keep in touch.
Bob

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I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

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@panamaj

I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

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Hello @panamaj – I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.

I see you are already following the cancer group, good for you.

Thank you for sharing your story. It is great to see that Car -T is being considered as a treatment for more cancers at this time. Just a few years ago the criteria was even more stringent.

I am excited for you that Car T may be a treatment option. Feel free to ask your questions about the Car T experience, I will help where I can and I am sure others will as well.

Will you stay connected so we can continue to offer you a place to to talk?

Take care.
Bob

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@grandpabob

Hello @panamaj – I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.

I see you are already following the cancer group, good for you.

Thank you for sharing your story. It is great to see that Car -T is being considered as a treatment for more cancers at this time. Just a few years ago the criteria was even more stringent.

I am excited for you that Car T may be a treatment option. Feel free to ask your questions about the Car T experience, I will help where I can and I am sure others will as well.

Will you stay connected so we can continue to offer you a place to to talk?

Take care.
Bob

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Thank you. I will stay connected. Hoping someone has some experience with CAR T trials for RCC. Thx!

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@panamaj

I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

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@panamaj, what great news that CAR-T is now being trialled for treatment of renal cell carcinoma.

As you deal with treating the lung infection aspergillosis, you may be interested in connecting with members in these discussions
– Aspergillosis https://connect.mayoclinic.org/discussion/aspergillosis-1/
– Aspergillus with MAC https://connect.mayoclinic.org/discussion/aspergillus-with-mac/

What questions do you have as you prepare for CAR-T therapy?

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@panamaj

Thank you. I will stay connected. Hoping someone has some experience with CAR T trials for RCC. Thx!

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@panamaj – Hello Marsha, I was just dropping in to say hello as it has been some time since we last communicated.

Did the Aspergillosis get treated sufficiently that you can now be considered a Car T Candidate? I hope so.

Take care.
Bob

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Hi there, my son has relapsed MDB and enrolled in the cartcell trial. Found that the risk/benefit was marginal, all but one has passed away. We terminated shortly after signing , my son's medical management and the roadmap has taken a grimm detour as a result. I have learned so much about this and want to share my experience with all but, in all truth the cartcells are unable to penetrate the solid tumor's antigen and hydrocephalus developed due from the excess csf This incident was a code blue when my son had a seizure from the pressure–the csf was extracted via Ommaya and we learned this was to be a common event. The Ommaya will result in tumor seeding as well. This is a palliative , last resort, and death is expected so it is not reported ( an IRB loophole I call it) The researcher states, "IT WONT BE YOU WHO GETS THE CURE BUT THE NEXT GUY." Sadly some believe they are the next guy.

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@alishawith4

Hi there, my son has relapsed MDB and enrolled in the cartcell trial. Found that the risk/benefit was marginal, all but one has passed away. We terminated shortly after signing , my son's medical management and the roadmap has taken a grimm detour as a result. I have learned so much about this and want to share my experience with all but, in all truth the cartcells are unable to penetrate the solid tumor's antigen and hydrocephalus developed due from the excess csf This incident was a code blue when my son had a seizure from the pressure–the csf was extracted via Ommaya and we learned this was to be a common event. The Ommaya will result in tumor seeding as well. This is a palliative , last resort, and death is expected so it is not reported ( an IRB loophole I call it) The researcher states, "IT WONT BE YOU WHO GETS THE CURE BUT THE NEXT GUY." Sadly some believe they are the next guy.

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Hello @alishawith4 – Welcome to Mayo Clinic Connect.

I am so sorry about the difficult situation you are in concerning your son, I can’t even begin to understand what you may be going through. I have had the experience of discussing Palliative Care for myself with my Oncologist however not for my child.
I do not profess to be familiar with MDB, I am sure like many forms of cancer it unfortunately is capable of affecting people differently in many cases.

Mayo Clinic Connect could be a good platform for you to share your story as there are perhaps some members that have found themselves in a similar situation as yours.

You are obviously a very brave person, thank you for taking the first step in sharing your experience.

Bob

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@alishawith4

Hi there, my son has relapsed MDB and enrolled in the cartcell trial. Found that the risk/benefit was marginal, all but one has passed away. We terminated shortly after signing , my son's medical management and the roadmap has taken a grimm detour as a result. I have learned so much about this and want to share my experience with all but, in all truth the cartcells are unable to penetrate the solid tumor's antigen and hydrocephalus developed due from the excess csf This incident was a code blue when my son had a seizure from the pressure–the csf was extracted via Ommaya and we learned this was to be a common event. The Ommaya will result in tumor seeding as well. This is a palliative , last resort, and death is expected so it is not reported ( an IRB loophole I call it) The researcher states, "IT WONT BE YOU WHO GETS THE CURE BUT THE NEXT GUY." Sadly some believe they are the next guy.

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Hi @alishawith4, I'd like to add my welcome. I'm sorry to hear that your son has medulloblastoma (MDB).

"In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas. Nevertheless, researchers caution that, in many respects, it’s still early days for CAR T cells, including questions about whether they will ever be effective against solid tumors like breast and colorectal cancer." https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

Researcher are studying the potential of CAR-T therapy for pediatric brain tumors
– CAR T Cell Therapy for Pediatric Brain Tumors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7435009/

Alisha, I write this information in part to share with other members reading this discussion. Clearly, the above information is not new to you.

You're right that clinical trials for new and novel therapies can give false hope, despite the careful consultation of researchers and signing of consent forms. It is altruistic and laudable when patients with late stage disease agree to take part in a clinical trial that will knowingly not prolong life and potentially can cause harm so that future patients may benefit.

I completely understand your decision to withdraw your son from the trial. You said that your son's medical management has taken "a grimm detour." I'm so sorry to hear this. What treatment is he getting? Are you also in the care of a palliative care team?

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@colleenyoung

Hi @alishawith4, I'd like to add my welcome. I'm sorry to hear that your son has medulloblastoma (MDB).

"In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas. Nevertheless, researchers caution that, in many respects, it’s still early days for CAR T cells, including questions about whether they will ever be effective against solid tumors like breast and colorectal cancer." https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

Researcher are studying the potential of CAR-T therapy for pediatric brain tumors
– CAR T Cell Therapy for Pediatric Brain Tumors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7435009/

Alisha, I write this information in part to share with other members reading this discussion. Clearly, the above information is not new to you.

You're right that clinical trials for new and novel therapies can give false hope, despite the careful consultation of researchers and signing of consent forms. It is altruistic and laudable when patients with late stage disease agree to take part in a clinical trial that will knowingly not prolong life and potentially can cause harm so that future patients may benefit.

I completely understand your decision to withdraw your son from the trial. You said that your son's medical management has taken "a grimm detour." I'm so sorry to hear this. What treatment is he getting? Are you also in the care of a palliative care team?

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Hello and may i please mention that my son was not in any late stages of cancer. We were presented with a very grimm bedside mannerism by the primary oncologist and lead to the trial. The marketing and the verbal mentions of " We'll see you in seven years and you'll be ….." – " remarks on social media "cartcells are less toxic, harmful to organs than conventional chemo, etc" THIS IS ABSOLUTELY MISLEADING" The context of adverse reactions are not linked to the proper adversities (as in the headache and hydrocephalus) and therefore it is untrue." The idea of "You may change your mind right up until the needle is above your head" is ludicrous, more on that later. Also, " Hey buddy you may hop from trial to trial if you dont like it". This is huge!!! ONE DOES NOT REALIZE THE CARTCELLS HAVE ALREADY INSULTED the body to the point of no return. This means ineligible for any others and frankly with these lingering monsters who would be eligible, as the results would be inconclusive. These engineered t cells change our entire immune response permanently, in fact, they remain indefinitley -for the good of nothing IN SOLID TUMORS. I will present my story piece by piece if i am able to. I speak the truth and can back it up anytime. Thank you for this warm welcome. I am making the most effort to not personally criticize . Thank you again. Let me add this as I am always intending to do so. Leukemia is doing very well with this cartcell immunotherapy but one should start from scratch and not piggy back off another when using the treatment for an entirely different system. Also we are not speaking of any experiences from the Mayo Clinic.

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@alishawith4

Hello and may i please mention that my son was not in any late stages of cancer. We were presented with a very grimm bedside mannerism by the primary oncologist and lead to the trial. The marketing and the verbal mentions of " We'll see you in seven years and you'll be ….." – " remarks on social media "cartcells are less toxic, harmful to organs than conventional chemo, etc" THIS IS ABSOLUTELY MISLEADING" The context of adverse reactions are not linked to the proper adversities (as in the headache and hydrocephalus) and therefore it is untrue." The idea of "You may change your mind right up until the needle is above your head" is ludicrous, more on that later. Also, " Hey buddy you may hop from trial to trial if you dont like it". This is huge!!! ONE DOES NOT REALIZE THE CARTCELLS HAVE ALREADY INSULTED the body to the point of no return. This means ineligible for any others and frankly with these lingering monsters who would be eligible, as the results would be inconclusive. These engineered t cells change our entire immune response permanently, in fact, they remain indefinitley -for the good of nothing IN SOLID TUMORS. I will present my story piece by piece if i am able to. I speak the truth and can back it up anytime. Thank you for this warm welcome. I am making the most effort to not personally criticize . Thank you again. Let me add this as I am always intending to do so. Leukemia is doing very well with this cartcell immunotherapy but one should start from scratch and not piggy back off another when using the treatment for an entirely different system. Also we are not speaking of any experiences from the Mayo Clinic.

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I must add that my son is still alive. surpassed that 9 months by 16 months. I am not bragging, please know this is to help others that may be headed to the hell we were.

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@alishawith4

I must add that my son is still alive. surpassed that 9 months by 16 months. I am not bragging, please know this is to help others that may be headed to the hell we were.

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@alishawith4 – Alisha, No bragging in what you are saying. Every day is precious, I am so glad that you and your family are having those days surpassed. Every day is a precious day.

What treatment is your son currently undergoing?

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