Car T Cell Therapy
Hi everyone,
My mom (61 years old) was recently diagnosed with DLBCL stage 4 and has undergoed 5 lines of chemo. Since it is so aggressive, she is no longer a candidate for a stem cell transplant. We are going to Dana Farber in Boston next week to talk about Car T cell therapy. Insurance is becoming a challenge and the longer we wait the more the cancer advances. My mom is 108 lbs with a lot of pain in her hips legs and back. Getting her to eat is difficult and now she is scared for what comes next. Does anyone have any experience with Car T cell therapy?
Comments
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So sorry..
So, so sorry to hear about your mom's situation, Brlennon. This must be so incredibly difficult for both of you. Also, sorry to see that no one has responded to your question. I've been following this forum for about 10 months and I do not remember anyone who has posted that they actually underwent the CAR T cell therapy yet. A few people have commented on visiting MD Anderson to discuss it, but have either reported back that they are doing a different chemo first or have not reported back at all. This may be because the CAR T cell in adults (outside of clinical trials) is so new.
The good news (if there really can be any good news in these situations) is that some of the adult clinical trials have been done and are still being done in the Boston area. (I assume Dana Farber, but haven't looked it up). That means they should have experience with handling the side effects, which I understand is very, very important. So you should find her in good hands there. The other thing is that she is under 65, which means she is more likely to be eligible for an ongoing CAR T clinical trial. Wishing you all the best with it.
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I appreciate you respondingEvarista said:So sorry..
So, so sorry to hear about your mom's situation, Brlennon. This must be so incredibly difficult for both of you. Also, sorry to see that no one has responded to your question. I've been following this forum for about 10 months and I do not remember anyone who has posted that they actually underwent the CAR T cell therapy yet. A few people have commented on visiting MD Anderson to discuss it, but have either reported back that they are doing a different chemo first or have not reported back at all. This may be because the CAR T cell in adults (outside of clinical trials) is so new.
The good news (if there really can be any good news in these situations) is that some of the adult clinical trials have been done and are still being done in the Boston area. (I assume Dana Farber, but haven't looked it up). That means they should have experience with handling the side effects, which I understand is very, very important. So you should find her in good hands there. The other thing is that she is under 65, which means she is more likely to be eligible for an ongoing CAR T clinical trial. Wishing you all the best with it.
I appreciate you responding to me. It is a scary time and challenging to find hope but we are trying.
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Car-TBrlennon812 said:I appreciate you responding
I appreciate you responding to me. It is a scary time and challenging to find hope but we are trying.
I am sorry to hear about your mom, this must be a very difficult time for you. My husband has Mantle Cell Lymphoma and has relapsed twice this year, 3 times total. We went to MD Anderson to see a specialist for MCL. He was able to get my husband back in remission but if he does relapse again, he wants to put him in his clinical trial for Car-T cell therapy. I am sure that Dana Farber must also have some trials going on if they suggested it. I do not think it is available without being in a trial and that would mean that the patient is not charged in a clinical trial. They will of course explain everything to you. There are many very good institutions working hard and succeeding at finding better answers and Dana Farber is one of them. I believe you are in good hands and that you will know more once you consult again with them. If they are not conducting trials for Car-T, they will be able to direct you to the proper channels. So please keep us updated and know that there has been much research going on with lymphoma as well as many cancers and although very difficult, try to keep a positive attitude. Feel free to ask any questions.
My best to you, your mom and family,
Becky
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Thank you, Becky. Hoping forillead said:Car-T
I am sorry to hear about your mom, this must be a very difficult time for you. My husband has Mantle Cell Lymphoma and has relapsed twice this year, 3 times total. We went to MD Anderson to see a specialist for MCL. He was able to get my husband back in remission but if he does relapse again, he wants to put him in his clinical trial for Car-T cell therapy. I am sure that Dana Farber must also have some trials going on if they suggested it. I do not think it is available without being in a trial and that would mean that the patient is not charged in a clinical trial. They will of course explain everything to you. There are many very good institutions working hard and succeeding at finding better answers and Dana Farber is one of them. I believe you are in good hands and that you will know more once you consult again with them. If they are not conducting trials for Car-T, they will be able to direct you to the proper channels. So please keep us updated and know that there has been much research going on with lymphoma as well as many cancers and although very difficult, try to keep a positive attitude. Feel free to ask any questions.
My best to you, your mom and family,
Becky
Thank you, Becky. Hoping for some good news tomorrow.
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Some links
I have been searching for solutions for my dad who has Double Hit lymphoma Stage IV. Here are some links that might help you. I am so sorry you and your Mom are facing this challenge. Good luck to you.
https://www.youtube.com/watch?v=mQC7sOUrsRE https://www.yescarta.com/infusion.html
https://www.nytimes.com/reuters/2018/04/05/world/europe/05reuters-cancer-medicare-yescarta.html "Medicare, the U.S. government healthcare program for the elderly and disabled, will pay hospitals close to its standard mark-up rate for administering cell therapy Yescarta for cancer outpatients,"
http://www.ajmc.com/conferences/asco-2017/dr-craig-portell-highlights-new-and-exciting-treatments-for-non-hodgkins-lymphoma additional drugs to research
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Thank you very much.mimosagirl said:Some links
I have been searching for solutions for my dad who has Double Hit lymphoma Stage IV. Here are some links that might help you. I am so sorry you and your Mom are facing this challenge. Good luck to you.
https://www.youtube.com/watch?v=mQC7sOUrsRE https://www.yescarta.com/infusion.html
https://www.nytimes.com/reuters/2018/04/05/world/europe/05reuters-cancer-medicare-yescarta.html "Medicare, the U.S. government healthcare program for the elderly and disabled, will pay hospitals close to its standard mark-up rate for administering cell therapy Yescarta for cancer outpatients,"
http://www.ajmc.com/conferences/asco-2017/dr-craig-portell-highlights-new-and-exciting-treatments-for-non-hodgkins-lymphoma additional drugs to research
Thank you very much.
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same diagnosis
I too am very sorry to hear of your mom's diagnosis. I was also diagnosed with stage IV DLBCL (multiple areas attacking my bones and bone marrow) and sought treament at MD Anderson (MDA). I know each case is different, but I am so thankful I went to them. I completed 6 rounds of DA-R-EPOCH, plus IT Chemo 12 times, and two HD-Methotrexate rounds as a prophylatic measure. I finished my treatments in mid-January and the initial scans found that I am in remission. I just returned from my first quarterly post-remission scans and follow-up and I am still cancer-free!
I was not sure from your post if the treatments your mom received ("5 lines of chemo") helped or not? As you may have heard by now, the FDA did recently approve CAR-T Cell treatment for certain cases of DLBCL, such as those resistant to traditional treatments or in cases of relapse. Dana Farber is one of the best, so I am sure you and your mom are in good hands! One of the amazing Oncologists at MDA told my husband and I that treatment was moving away from stem cell transplants and what I have read about CAR-T cell therapy makes it sound pretty amazing if it is needed.
This is such a life-altering new reality. Best wishes to your mom, you , and your family!
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Thank you so much for yourScubamom for two said:same diagnosis
I too am very sorry to hear of your mom's diagnosis. I was also diagnosed with stage IV DLBCL (multiple areas attacking my bones and bone marrow) and sought treament at MD Anderson (MDA). I know each case is different, but I am so thankful I went to them. I completed 6 rounds of DA-R-EPOCH, plus IT Chemo 12 times, and two HD-Methotrexate rounds as a prophylatic measure. I finished my treatments in mid-January and the initial scans found that I am in remission. I just returned from my first quarterly post-remission scans and follow-up and I am still cancer-free!
I was not sure from your post if the treatments your mom received ("5 lines of chemo") helped or not? As you may have heard by now, the FDA did recently approve CAR-T Cell treatment for certain cases of DLBCL, such as those resistant to traditional treatments or in cases of relapse. Dana Farber is one of the best, so I am sure you and your mom are in good hands! One of the amazing Oncologists at MDA told my husband and I that treatment was moving away from stem cell transplants and what I have read about CAR-T cell therapy makes it sound pretty amazing if it is needed.
This is such a life-altering new reality. Best wishes to your mom, you , and your family!
Thank you so much for your reply. After two months of trying to “contain” my moms DLBCNHL we are back in the hospital. Talked to Dana Farber oncologist today who notified me that my mom will need another recipe of chemo. (We don’t know which yet—my mom has already had 5 lines of chemo.) He was honest with the fact that her cancer needs to be contained enough for the Car T cell therapy and her health needs to be better. Pain and eating has been the biggest challenge. Does anyone have a similar experience or advice? ♥️
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Dana FarberBrlennon812 said:Thank you so much for your
Thank you so much for your reply. After two months of trying to “contain” my moms DLBCNHL we are back in the hospital. Talked to Dana Farber oncologist today who notified me that my mom will need another recipe of chemo. (We don’t know which yet—my mom has already had 5 lines of chemo.) He was honest with the fact that her cancer needs to be contained enough for the Car T cell therapy and her health needs to be better. Pain and eating has been the biggest challenge. Does anyone have a similar experience or advice? ♥️
I am sure they will have the right protocol.....trust them, you are fortunate to be in their hands, they know what to do. Please don't be alarmed about staging, Lymphoma staging is different than most other cancer stagings. It does not determine the seriousness of the illness but more just the state it is in, the majority of lymphomas appear at stage 4 because it is so non symptomatic until it reaches stage 4. I know you are scared to death, I was there with my husband, but they will get this under control and then you will be able to calm down a little. Just work hard at being a good support caregiver/adversary for your mom and come here for reassurance. Your mom needs her little girl to be strong, you are a wonderful daughter.
Hang in there,
Becky
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