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
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?
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 ???
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.
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!
CAR-T Immunotherapy is the newest treatment for some leukemias and for non-Hodgkin lymphoma. A good overview can be found on the National Cancer Institute website:
Copy and paste each in your browser to find out more.
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.
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!
My mother is also sensitive to drugs, she is the genotype for Gilbert's syndrome and perhaps this is the cause. I am also HLA-B27 positive as well as at least heterozygous for GS, all of which means that I too am sensitive to various things! Sounds like you are really learning about your condition. For me and my family it's very scary but we are taking it day by day.
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.
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.
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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 ReactionHappy 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?
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 ???
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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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!
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1 ReactionHello..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 ReactionMy mother is also sensitive to drugs, she is the genotype for Gilbert's syndrome and perhaps this is the cause. I am also HLA-B27 positive as well as at least heterozygous for GS, all of which means that I too am sensitive to various things! Sounds like you are really learning about your condition. For me and my family it's very scary but we are taking it day by day.
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.
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?