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Good morning everyone!
Good morning everyone!
If you've been following along with our story, then you'd know that he didn't end up qualifying for the BRAF/MEK trial and he was instead offered Chemo as a hopeful stopgap. Dr. Lawrence was clear in that it wasn't a high chance it would work effectively (25-30% chance, basically), but with how aggressively Don's cancer was spreading, other options like Ipi were not viable.The hope was that the chemo would work enough to bring Don's liver functions back into a more stable place so that he might qualify for a compassionate use PLX trial that was opening soon.
Don had his first treatment (carboplatin and paxiltaxel) on May 29th. After a tough couple weeks (he ended up getting a staph infection and spent another week in the hospital), Don went for his follow up visit with Dr. Lawrence on Monday.
He asked Don how he was feeling: better, worse, or the same. Don said about the same (keep in mind that the Vancomycin he is still taking for the Staph infection makes Don vomit at least twice a day). I mentioned to Dr. L that it seemed to me that the tumor under Don's arm had shrunk some (it actually had been bulging out of his armpit making it so Don couldn't put his arm down to his side completely). He asked Don if he thought that also and Don said yes, because he could bring his arm all the way down to his side again.
Dr. Lawrence took a good look under his arm and palpitated the area well. He was shocked and amazed at what he found. He told us that the response that Don had was something he would have expected if he were on the BRAF trial, but never expected to see after chemo. He said that the underarm tumor used to feel like a softball; now it felt like a couple of marbles.
His liver numbers, we later discovered, had a similar transformation. Don's LDH level on the morning of 5/30 (a few hours after receiving the Chemo) was 2375. The LDH level from Monday's blood draw was 539.
Based on the level of Don's response, rather than put him into the Compassionate Use trial as planned, Dr. Lawrence wants to continue Don on the Chemo for as long as it seems effective. This will be judged treatment by treatment, with the knowledge that the BRAF drugs are still there as a resource if needed.
It also seems promising that the pain medicine levels that were working well for Don when he left MGH post-chemo treatment are too high for him now. His pain management doctor (who we also saw on Monday) agreed that they should be lowered and is bringing the Methadone dose down from 10mg 3xday to 7.5mg 3xday. Even after switching this on Monday, Don hasn't had to use his breakthrough meds since Sunday.
We are stunned and thrilled that we finally have made some headway against this beast. Still, I have to admit that I am having a hard time switching gears; I still am afraid to have too much hope. Please help me believe.
Thanks to you all, and please, keep Don and I in your prayers…it finally seems to be working!
Michelle, wife of Don
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