TUESDAY, AUGUST 6th, 2019
Chris had his follow up with the ocular oncologist yesterday. After getting several different types of pictures taken, the oncologist was confident that the spots on Chris's left retina were cotton wool spots and not lymphoma. "Cotton wool spots are small yellowish-white deposits (resembling cotton fluffs) in the retina. They represent swelling of the retinal nerve fibers. This swelling usually occurs because the blood supply to that area has been impaired and the decreased blood flow has injured the nerve fibers in that location." (https://nei.nih.gov/faqs/retina-cotton-wool-spots)
As a result of yesterday's meeting with the ocular oncologist, Dr. Shah feels confident that Chris does not have lymphoma in his CSF or brain; as such, Chris started the Gemcitabine/ Dexamethasone/ Cisplatin chemotherapy R-GDP) regimen today. This chemo regimen does not cross the blood brain barrier typically, but Chris is receiving an increased dose of Rituxan which will be able to cross the blood brain barrier. (Dr. Shah wanted the increased dosing this round because Chris was unable to receive intrathecal chemo after his last lumbar puncture.)
Aside from different drugs, this R_GDP chemo regimen will differ from the R-EPOCH Chris was originally on because of the way it's administered. The R-Epoch was administered as a continuous infusion over 5 days; this regimen consists of getting the Rituxan, Gemcitabine, and Cisplatin in sequential infusions lasting between 30 and 90 minutes each (with some pre-medication also), and then getting another dose of Gemcitabine on day 8. He will not need any labs drawn until day 8.
Currently, the long-term plan is that Chris will get two rounds of the R-GDP chemo, three weeks apart, and will have a PET scan following the second round to assess his response. If Chris is in complete or partial remission, with no new areas of lymphoma, he would get an autologous stem cell transplant. Here's a good explanation of that. https://www.mayoclinic.org/tests-procedures/autologous-stem-cell-transplant/pyc-20384859 If Chris is chemo-refractory and has new areas of lymphoma after two rounds of this new chemo regimen, he would move to CAR-T therapy. https://www.cancer.gov/about-cancer/treatment/research/car-t-cells Both a stem cell transplant and CAR-T therapy would mean Chris will eventually be in the hospital for three to four weeks straight while undergoing those specific treatments.
Dr. Shah's area of research is CAR-T therapy, and he believes that Chris is likely heading towards that route based on what he has seen before. Unfortunately, CAR-T therapy is not FDA approved as a front-line or second line treatment therapy for lymphoma, so regardless, Chris needs to undergo the R-GDP chemo.
There is a slight possibility that Dr. Shah's clinical trial might have an opening (even though it closed a month ago). If that is the case, (which we will know in the next few weeks) Chris would only undergo one round of R-GDP chemo, get a PET scan, and move to CAR-T therapy. The therapy in the clinical trial differs from the FDA approved CAR-T in that the T-cells would be modified to target both the CD-19 and CD-20 molecules on the B-cells instead of just the CD-19 molecules. Again, there is just a small chance that Chris could receive this treatment, but I thought it was worth mentioning.
I know this was a lot of info. Feel free to reach out with any questions.
Fingers crossed that Chris doesn't feel too terrible after this round of chemo.
Thanks for the love and support.
V
Chris had his follow up with the ocular oncologist yesterday. After getting several different types of pictures taken, the oncologist was confident that the spots on Chris's left retina were cotton wool spots and not lymphoma. "Cotton wool spots are small yellowish-white deposits (resembling cotton fluffs) in the retina. They represent swelling of the retinal nerve fibers. This swelling usually occurs because the blood supply to that area has been impaired and the decreased blood flow has injured the nerve fibers in that location." (https://nei.nih.gov/faqs/retina-cotton-wool-spots)
As a result of yesterday's meeting with the ocular oncologist, Dr. Shah feels confident that Chris does not have lymphoma in his CSF or brain; as such, Chris started the Gemcitabine/ Dexamethasone/ Cisplatin chemotherapy R-GDP) regimen today. This chemo regimen does not cross the blood brain barrier typically, but Chris is receiving an increased dose of Rituxan which will be able to cross the blood brain barrier. (Dr. Shah wanted the increased dosing this round because Chris was unable to receive intrathecal chemo after his last lumbar puncture.)
Aside from different drugs, this R_GDP chemo regimen will differ from the R-EPOCH Chris was originally on because of the way it's administered. The R-Epoch was administered as a continuous infusion over 5 days; this regimen consists of getting the Rituxan, Gemcitabine, and Cisplatin in sequential infusions lasting between 30 and 90 minutes each (with some pre-medication also), and then getting another dose of Gemcitabine on day 8. He will not need any labs drawn until day 8.
Currently, the long-term plan is that Chris will get two rounds of the R-GDP chemo, three weeks apart, and will have a PET scan following the second round to assess his response. If Chris is in complete or partial remission, with no new areas of lymphoma, he would get an autologous stem cell transplant. Here's a good explanation of that. https://www.mayoclinic.org/tests-procedures/autologous-stem-cell-transplant/pyc-20384859 If Chris is chemo-refractory and has new areas of lymphoma after two rounds of this new chemo regimen, he would move to CAR-T therapy. https://www.cancer.gov/about-cancer/treatment/research/car-t-cells Both a stem cell transplant and CAR-T therapy would mean Chris will eventually be in the hospital for three to four weeks straight while undergoing those specific treatments.
Dr. Shah's area of research is CAR-T therapy, and he believes that Chris is likely heading towards that route based on what he has seen before. Unfortunately, CAR-T therapy is not FDA approved as a front-line or second line treatment therapy for lymphoma, so regardless, Chris needs to undergo the R-GDP chemo.
There is a slight possibility that Dr. Shah's clinical trial might have an opening (even though it closed a month ago). If that is the case, (which we will know in the next few weeks) Chris would only undergo one round of R-GDP chemo, get a PET scan, and move to CAR-T therapy. The therapy in the clinical trial differs from the FDA approved CAR-T in that the T-cells would be modified to target both the CD-19 and CD-20 molecules on the B-cells instead of just the CD-19 molecules. Again, there is just a small chance that Chris could receive this treatment, but I thought it was worth mentioning.
I know this was a lot of info. Feel free to reach out with any questions.
Fingers crossed that Chris doesn't feel too terrible after this round of chemo.
Thanks for the love and support.
V
You guys have been on our minds - hope everything is going well. <3
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