The past week has been tough!! Mark's pain has increased in intensity almost every day. The cluster of tumors at the base of the spine hurt his back, cancer in his hip has now grown enough that it causes pain, and the tumors in the liver are pushing on the lining where the nerves are, so the pain in his side gets quite intense. Last Sunday was the worst, so we texted Dr. Taylor. Quickly, he gave us advice on how to manage the pain with the meds we already had. Mark wears a Fentanyl patch, takes Hydrocodone every 4 hours and Dilaudid every 3 hours. His pain rarely goes away completely, but it definitely helps. When I asked him if he has times with absolutely no pain, he said it happens occasionally, and when it does, it's worth celebrating! Next Wednesday, he will meet with a Palliative Care specialist to help manage the pain until the tumors shrink.
Today we met with Tara, who will oversee the clinical trial ALPN-202. We signed the papers and will actually get paid a small amount to participate in the study. She also gave us our schedule. The CT scan was done this afternoon, and the MRI will be this Friday. The first infusion is next Tuesday, the 7th, which is sooner than we had anticipated! He'll be at the clinic for at least six hours, and I can't go in with him (darn Covid!). (I still have to drive--he can't, with all these drugs!) It takes about an hour and a half to administer the medication, but he will have blood pressure checks after two hours and again after four hours. Then, it's lab work multiple times a week for the first week and exams and lab work weekly. After that, infusions will be every three weeks, for as long as it is working and he can handle it. We are thrilled to have this clinical trial available at Providence Portland at the exact time we need it! It is amazing!!
Dr. Taylor came in afterward and was eager to share with us more good news. The needle in the haystack was found!! This is INCREDIBLE!!! Dr. Taylor found out yesterday afternoon. The scientist found the T-Cells they were looking for a few days ago, but they retested to verify the results were correct before contacting Dr. Taylor. As soon as he heard, Dr. Taylor hurried over to share the news with Dr. Urba. They discussed the best strategy. While Mark is on the clinical trial, the T-Cells will be cloned, so there are billions of these fighters. The process will take several months, so it's a good thing there is something in the meantime. Also, the cells can be stored until needed. We didn't have much hope for this treatment because it is so rare to find the kind of T-cells that actually recognize and destroy the cancerous cells, but miracle of miracles, they were found!!! If the clinical trial doesn't work, it's on to the Clone Wars!
Today we are much more hopeful! I'll admit that during this past week, I've wondered if we were getting close to the end, and we still could be, but more options are now available! Hallelujah!!!
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