My husband had this procedure in May-June 2018. It's very rough, but it worked for him. CAR-T is, as I understand, is not a first option treatment. Before his CAR-T, my husband had exhausted every other treatment option, including R-CHOP chemotherapy (in our city) and an autologous stem cell transplant (at Mayo). But his cancer, T-Cell Rich B-Cell non-Hodgkin Lymphoma, returned, and he was considered terminal in March 2017. But CAR-T passed clinical trials and was approved as a treatment by the FDA that autumn. After CAR-T, however, he is now in remission. Not all patients are eligible for CAR-T. Luckily, my husband's cancer advanced very slowly, and he was still asymptomatic and feeling find, with no other underlying health issues (diabetes, heart disease, etc.) when we went to Mayo's for the pre-tests. A patient must undergo a battery of pre-tests to ensure he or she can withstand the serious, but temporary, neurological and other side effects and the stress the treatment inflicts on the heart, kidneys, liver, etc. My husband had these serious side effects, but none was permanent. CAR-T treatment lasts about eight weeks, including, most often, one to two weeks of in-patient hospitalization when the side effects happen (usually very shortly after the T-cells are reinfused). If the patient is not hospitalized, he or she must go to outpatient clinic every day to be monitored over the course of the treatment. To undergo the CAR-T treatment, a patient must bring along a caregiver who is willing to assist in every way possible and observe the patent--24 hours a day. (Believe me, this was needed!) When the patient returns home, there is usually a week or two of recuperation before the patient feels like returning to work for a sendentary job (like my husband's). This recuperation would be longer if your had a job that required more physical or strenuous work. Also, the patient must return to Mayo's every three months or so for follow-up PETs and blood tests for a year and more. My husband was treated at Mayo's. I can't recommend Mayo's enough. The CAR-T team--everyone from doctors, physician assistants, nurses, physical and occupational therapists, well--everybody!!--was stellar. We will never forget the wonderful people we met. They are the very best!
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.
Over the summer there were clinical trials for CAR-T in Philadelphia. I do not know if they are still open. Have you spoken to your doctor regarding CAR-T? I also know that Mayo is doing clinical trials on high dose intravenous sodium ascorbate for some blood cancers including I believe lymphoma, and has also completed a clinical trial for FMD (fasting mimicking diet) prior to chemotherapy. I don't yet see the results of this trial online though. Consulting with Riordan Clinic in Kansas about complementary and first line therapies for blood cancers has been very helpful for me. God bless you.
Thank you so much for responding ...I am from Connecticut and I recently went to see a doctor at Mayo Clinic in Jacksonville FL. I am learning many new things about my condition. It seems that treatment protocols are different in different states. I was ordered a bone Marrow test and a Pet scan at the Mayo clinic..CT has refused previously to do bone marrow. I have severe allergies and terrified to try drugs. I am seeking for Car T cell therapy . Never heard about the Mimicking diet FMD...I am not getting any treatments yet but getting closer as infections are showing up every month. I am trying to get informed and prepared to get the right treatment for me. My doctor in CT says that I wont get Car T cell therapy unless I fail other drugs therapies. CT isn't much advanced , their focus is in the drugs , same as Boston . They are developing customized drugs, but I find those drugs are pretty scary too. I read about Imbruvica and I dont like the fact that their protocols require doctors to start at higher dose. With my sensitivities it could kill me. Also the drug could cause cells to travel and cancer could develop in other areas. It could cause brain bleeding etc...I find the drug is pretty scary and the doctor refused to start me in a lower dose . He wanted one pill with 420 mg. I am sensitive even to over the counter meds,antibiotics ,dyes, foods, histamine and many foods ..My allergies & sensitivities are pretty bad. So I have to be careful...Many Blessing for you too!
Over the summer there were clinical trials for CAR-T in Philadelphia. I do not know if they are still open. Have you spoken to your doctor regarding CAR-T? I also know that Mayo is doing clinical trials on high dose intravenous sodium ascorbate for some blood cancers including I believe lymphoma, and has also completed a clinical trial for FMD (fasting mimicking diet) prior to chemotherapy. I don't yet see the results of this trial online though. Consulting with Riordan Clinic in Kansas about complementary and first line therapies for blood cancers has been very helpful for me. God bless you.
Over the summer there were clinical trials for CAR-T in Philadelphia. I do not know if they are still open. Have you spoken to your doctor regarding CAR-T? I also know that Mayo is doing clinical trials on high dose intravenous sodium ascorbate for some blood cancers including I believe lymphoma, and has also completed a clinical trial for FMD (fasting mimicking diet) prior to chemotherapy. I don't yet see the results of this trial online though. Consulting with Riordan Clinic in Kansas about complementary and first line therapies for blood cancers has been very helpful for me. God bless you.
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 ???
Happy new year all. @smokie, great to hear that Greg continues to improve. How is he feeling about the level of fatigue. Is he seeing improvements? @gkrapohl Graydon, It's been a few months since you posted. How is your fatigue doing? Getting better?
I am about 8 months out and I am doing well also. I think one of the biggest side effects I have experienced not only with CAR-T but also multiple rounds of chemo has been fatigue. I can get tired very quickly sometimes and at other times I am fine. I try to take time to rest before I get tired. I have found that it is different for everyone and it just takes time to recover. Graydon
I am about 8 months out and I am doing well also. I think one of the biggest side effects I have experienced not only with CAR-T but also multiple rounds of chemo has been fatigue. I can get tired very quickly sometimes and at other times I am fine. I try to take time to rest before I get tired. I have found that it is different for everyone and it just takes time to recover. Graydon
@kevin_153, here are a few additional resources should you be interested in researching a bit more about CAR-T trials at Mayo Clinic or a potential second opinion:
@kevin_153, you mentioned that you relapsed from your stem cell transplant within 10 months. Many members have inquired about the process of undergoing a stem cell transplant, even though you relapsed, are you comfortable sharing your overall experience with your autologous stem cell transplant?
The overall experience was good. There were some very tough days. However, I tried to remain active every day I was in there. I would walk laps no matter how bad I felt. The day my ANC was zero is etched into my memory forever. I did an on-line course while I was in the hospital for a month. It helped to keep me distracted. I was very blessed through the process.
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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.
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1 ReactionThank you so much for responding ...I am from Connecticut and I recently went to see a doctor at Mayo Clinic in Jacksonville FL. I am learning many new things about my condition. It seems that treatment protocols are different in different states. I was ordered a bone Marrow test and a Pet scan at the Mayo clinic..CT has refused previously to do bone marrow. I have severe allergies and terrified to try drugs. I am seeking for Car T cell therapy . Never heard about the Mimicking diet FMD...I am not getting any treatments yet but getting closer as infections are showing up every month. I am trying to get informed and prepared to get the right treatment for me. My doctor in CT says that I wont get Car T cell therapy unless I fail other drugs therapies. CT isn't much advanced , their focus is in the drugs , same as Boston . They are developing customized drugs, but I find those drugs are pretty scary too. I read about Imbruvica and I dont like the fact that their protocols require doctors to start at higher dose. With my sensitivities it could kill me. Also the drug could cause cells to travel and cancer could develop in other areas. It could cause brain bleeding etc...I find the drug is pretty scary and the doctor refused to start me in a lower dose . He wanted one pill with 420 mg. I am sensitive even to over the counter meds,antibiotics ,dyes, foods, histamine and many foods ..My allergies & sensitivities are pretty bad. So I have to be careful...Many Blessing for you too!
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1 ReactionThank you
Over the summer there were clinical trials for CAR-T in Philadelphia. I do not know if they are still open. Have you spoken to your doctor regarding CAR-T? I also know that Mayo is doing clinical trials on high dose intravenous sodium ascorbate for some blood cancers including I believe lymphoma, and has also completed a clinical trial for FMD (fasting mimicking diet) prior to chemotherapy. I don't yet see the results of this trial online though. Consulting with Riordan Clinic in Kansas about complementary and first line therapies for blood cancers has been very helpful for me. God bless you.
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1 ReactionMy 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 ???
Happy new year all.
@smokie, great to hear that Greg continues to improve. How is he feeling about the level of fatigue. Is he seeing improvements?
@gkrapohl Graydon, It's been a few months since you posted. How is your fatigue doing? Getting better?
Thanks for your reply. Greg is almost 18 mo out now. I can still see fatigue , but less now. Good luck and Happy New Yrar!
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1 ReactionI am about 8 months out and I am doing well also. I think one of the biggest side effects I have experienced not only with CAR-T but also multiple rounds of chemo has been fatigue. I can get tired very quickly sometimes and at other times I am fine. I try to take time to rest before I get tired. I have found that it is different for everyone and it just takes time to recover. Graydon
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1 ReactionThe overall experience was good. There were some very tough days. However, I tried to remain active every day I was in there. I would walk laps no matter how bad I felt. The day my ANC was zero is etched into my memory forever. I did an on-line course while I was in the hospital for a month. It helped to keep me distracted. I was very blessed through the process.
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1 ReactionI am 11 months in as well tiredness has long past for me. Did a lot of exercise to help me get past that.
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