TUESDAY, DECEMBER 17th, 2019
Chris had his follow up PET scan today...and it showed that he is now in complete remission!! The two areas that previously showed small amounts of cancer activity now have no activity. There was only one lymph node in Chris's lung that was abnormal, but it was just inflamed. They believe it is a result of Chris having pneumonia. As a result, Chris was started on two new antibiotics today.
Chris being in complete remission, although great news, puts us in a tough position. As is stands right now, Chris still has a 60% chance of relapsing within the next two years (40% chance that he's cured). So now the decision is whether or not Chris should get an allogeneic bone marrow transplant. Dr. Shah went over several scenarios with us to help us make a more informed decision:
Patients who are in complete remission 60 days post CAR-T Cell Therapy have a 40% chance of being cured; leaving a 60% chance of relapse. Of those 60% of patients that relapse, 80% of them will likely die without an allogeneic BMT. If Chris did get a BMT, it could potentially increase his cure likelihood from 40% to somewhere around 60% (this is an estimate). The 40% of patients that are not cured at this point also do not do well. Additionally, with receiving a BMT, at 2 years out, Chris would still have a 10% chance of dying, and a 30% chance of developing Graft vs Host Disease.
All in all, the next step moving forward is an ethical question: Do we hope Chris is in the 40% of people that are cured post CAR-T? If he's not, and he progresses too quickly, we can no longer have a BMT as an option. What if he is in the 40% of people that were cured post CAR-T and he gets a BMT, hoping to prevent relapse, and dies or gets chronic/ lifelong Graft vs. Host Disease as a result of the BMT?
It's a question of potentially over-treating or under-treating Chris and the potential risks that are associated with each. Unfortunately, there's not much data on the subject because CAR-T is such a new treatment.
https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS32_GVHD_6.19_Update.pdf
Lastly, Dr. Shah shared with us a newer test that is being done post CAR-T Cell Therapy that could potentially help us in making this tough decision: a Minimal Residual Disease (MRD) test.
https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS35_MRD_Final_2019.pdf
Essentially, a MRD test uses a sample of Chris's blood to test for any small amount of cancer cells still present in his blood, but went undetected in the PET scan. The test for use in lymphoma has a small sample size, but promising results as far as helping predict the likelihood of a relapse. They drew Chris's blood today, and we will get the results in about two weeks.
In the meantime, Chris has decided to postpone the BMT until we receive the results of the MRD test. Dr. Shah has put his donor on hold, so if Chris's test comes back MRD positive than we will proceed with the BMT. At this point it would probably be a four week process instead of a six week process since all of the preliminary testing has been completed.
For now, we are relishing in the fact that Chris is in COMPLETE REMISSION! There were several points in the last six months that we were worried about even making it this far.
We will update with the results of the MRD once they come in. Thank you for your continued thoughts and prayers. Have a JOYFUL and festive holiday season.
V
P.S: Check out some pictures of us taking advantage of Chris's good health the last couple weeks.
Chris had his follow up PET scan today...and it showed that he is now in complete remission!! The two areas that previously showed small amounts of cancer activity now have no activity. There was only one lymph node in Chris's lung that was abnormal, but it was just inflamed. They believe it is a result of Chris having pneumonia. As a result, Chris was started on two new antibiotics today.
Chris being in complete remission, although great news, puts us in a tough position. As is stands right now, Chris still has a 60% chance of relapsing within the next two years (40% chance that he's cured). So now the decision is whether or not Chris should get an allogeneic bone marrow transplant. Dr. Shah went over several scenarios with us to help us make a more informed decision:
Patients who are in complete remission 60 days post CAR-T Cell Therapy have a 40% chance of being cured; leaving a 60% chance of relapse. Of those 60% of patients that relapse, 80% of them will likely die without an allogeneic BMT. If Chris did get a BMT, it could potentially increase his cure likelihood from 40% to somewhere around 60% (this is an estimate). The 40% of patients that are not cured at this point also do not do well. Additionally, with receiving a BMT, at 2 years out, Chris would still have a 10% chance of dying, and a 30% chance of developing Graft vs Host Disease.
All in all, the next step moving forward is an ethical question: Do we hope Chris is in the 40% of people that are cured post CAR-T? If he's not, and he progresses too quickly, we can no longer have a BMT as an option. What if he is in the 40% of people that were cured post CAR-T and he gets a BMT, hoping to prevent relapse, and dies or gets chronic/ lifelong Graft vs. Host Disease as a result of the BMT?
It's a question of potentially over-treating or under-treating Chris and the potential risks that are associated with each. Unfortunately, there's not much data on the subject because CAR-T is such a new treatment.
https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS32_GVHD_6.19_Update.pdf
Lastly, Dr. Shah shared with us a newer test that is being done post CAR-T Cell Therapy that could potentially help us in making this tough decision: a Minimal Residual Disease (MRD) test.
https://www.lls.org/sites/default/files/National/USA/Pdf/Publications/FS35_MRD_Final_2019.pdf
Essentially, a MRD test uses a sample of Chris's blood to test for any small amount of cancer cells still present in his blood, but went undetected in the PET scan. The test for use in lymphoma has a small sample size, but promising results as far as helping predict the likelihood of a relapse. They drew Chris's blood today, and we will get the results in about two weeks.
In the meantime, Chris has decided to postpone the BMT until we receive the results of the MRD test. Dr. Shah has put his donor on hold, so if Chris's test comes back MRD positive than we will proceed with the BMT. At this point it would probably be a four week process instead of a six week process since all of the preliminary testing has been completed.
For now, we are relishing in the fact that Chris is in COMPLETE REMISSION! There were several points in the last six months that we were worried about even making it this far.
We will update with the results of the MRD once they come in. Thank you for your continued thoughts and prayers. Have a JOYFUL and festive holiday season.
V
P.S: Check out some pictures of us taking advantage of Chris's good health the last couple weeks.
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