Car-T is new type of therapy, both at Mayo Clinic and worldwide. Because of this, I believe you are the first member to discuss CAR-T for lymphoma on Connect.
@2012lemi30, while I search for some members who have had similar diagnoses as you, if you are comfortable, would you mind sharing a bit more about yourself? Only if you are comfortable, have you underwent other treatments for B cell lymphoma, and has CAR-T been suggested as a treatment option for you?
Thank you for starting this discussion on this new treatment, I think this is a good discussion to start and members will come to this discussion moving forward.
Car-T is new type of therapy, both at Mayo Clinic and worldwide. Because of this, I believe you are the first member to discuss CAR-T for lymphoma on Connect.
@2012lemi30, while I search for some members who have had similar diagnoses as you, if you are comfortable, would you mind sharing a bit more about yourself? Only if you are comfortable, have you underwent other treatments for B cell lymphoma, and has CAR-T been suggested as a treatment option for you?
Thank you for starting this discussion on this new treatment, I think this is a good discussion to start and members will come to this discussion moving forward.
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!
Also, @annmillercarr shared some of her husband's experience here in this discussion (click on VIEW & REPLY in your email to get to the whole discussion), and hoping she will return to talk with you more about this therapy. @cindylb @smokie@grandpabob@grannybrenda@greta_k@1nan also may have some information to share on this treatment.
@jaler - is CAR-T cell therapy a treatment your doctor is considering for you at this time?
Also, @annmillercarr shared some of her husband's experience here in this discussion (click on VIEW & REPLY in your email to get to the whole discussion), and hoping she will return to talk with you more about this therapy. @cindylb @smokie@grandpabob@grannybrenda@greta_k@1nan also may have some information to share on this treatment.
@jaler - is CAR-T cell therapy a treatment your doctor is considering for you at this time?
Hello @jaler. I hope you have read my description earlier on this web. If you have, and have more questions, please ask them. Again, CAR-T is rough. But I am hear to tell you it can work. We just returned home from a checkup at Mayo's and all indications are my husband is still in complete remission 13 months after the t-cells were re-infused. He feels fine. However, he is neutropenic, mostly because of a bad case of pneumonia which developed from an RSV infection he contracted at Christmastime. He was anemic and his platelet count was down considerably also afterwards. His platelets are back to normal and he is still slightly anemic, but nothing to get worried about. Those counts have rebounded. After the pneumonia, his white blood cell count was one-tenth of normal. It is now one-half, so it's slowly coming around and the doctors say eventually it will be back in normal range. He just can't get another serious infection or illness right now.
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
Kevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
Kevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
I hadn't thought about a second opinion from Mayo until now. I did get a second opinion from the UCHealth University of Colorado Hospital. They didn't have the Allogene Car-T trial. They wanted me to go through radiation and then to a bone marrow transplant with a donor.
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Hello @2012lemi30, and welcome to Connect.
Car-T is new type of therapy, both at Mayo Clinic and worldwide. Because of this, I believe you are the first member to discuss CAR-T for lymphoma on Connect.
@2012lemi30, while I search for some members who have had similar diagnoses as you, if you are comfortable, would you mind sharing a bit more about yourself? Only if you are comfortable, have you underwent other treatments for B cell lymphoma, and has CAR-T been suggested as a treatment option for you?
Thank you for starting this discussion on this new treatment, I think this is a good discussion to start and members will come to this discussion moving forward.
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Helpful -
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1 ReactionWhat exactly is CAR-T therapy?
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:
https://www.cancer.gov/about-cancer/treatment/research/car-t-cells
and on the Mayo Clinic page for CAR-T
https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317
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!
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13 ReactionsCan someone explain what is done to the patient in CAR T cell therapy?
Hello, @jaler - this Mayo Clinic information may be helpful to explain CAR-T cell therapy https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/sections/gnc-20405215
Also, @annmillercarr shared some of her husband's experience here in this discussion (click on VIEW & REPLY in your email to get to the whole discussion), and hoping she will return to talk with you more about this therapy. @cindylb
@smokie @grandpabob @grannybrenda @greta_k @1nan also may have some information to share on this treatment.
@jaler - is CAR-T cell therapy a treatment your doctor is considering for you at this time?
Thank you, Lisa.
Hello @jaler. I hope you have read my description earlier on this web. If you have, and have more questions, please ask them. Again, CAR-T is rough. But I am hear to tell you it can work. We just returned home from a checkup at Mayo's and all indications are my husband is still in complete remission 13 months after the t-cells were re-infused. He feels fine. However, he is neutropenic, mostly because of a bad case of pneumonia which developed from an RSV infection he contracted at Christmastime. He was anemic and his platelet count was down considerably also afterwards. His platelets are back to normal and he is still slightly anemic, but nothing to get worried about. Those counts have rebounded. After the pneumonia, his white blood cell count was one-tenth of normal. It is now one-half, so it's slowly coming around and the doctors say eventually it will be back in normal range. He just can't get another serious infection or illness right now.
-
Like -
Helpful -
Hug
8 ReactionsHi, 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
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Like -
Helpful -
Hug
7 ReactionsKevin--My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?
-
Like -
Helpful -
Hug
2 ReactionsI hadn't thought about a second opinion from Mayo until now. I did get a second opinion from the UCHealth University of Colorado Hospital. They didn't have the Allogene Car-T trial. They wanted me to go through radiation and then to a bone marrow transplant with a donor.
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Like -
Helpful -
Hug
1 ReactionCan anyone explain the difference between Reactive and Predominant lymphoid nodules?