18 Month PCR results...

Yeah, no kidding, it's already 18th months on Ponatinib. Still staying on 60 mg, and side effects are manageable. My blood counts were steady compared to 3 months ago, and my PCR came back with "Weak Positive" again. This is the 3rd weak positive result I've had in 4.5 months, so either the decline is just happening much slower, or possibly I have bottomed out there. While it would be wonderful to be in PCRU (Undetectable), I won't complain about holding steady at weak positive either.

The tests that show the cytogenetics are still outstanding, they can take up to 3 weeks so I won't know for another week probably.

Dec 2nd - Cycle 2, Day 1 Ariad Trial

The trial works on a cycle (monthly) and a day offset of each day. So it's basically 4 week per cycle. Today is Day 1 of the 2nd cycle. It's an all day appointment, with various tests. I also got to see Dr. Deininger today, and Linda, his nurse. Both were so instrumental in getting me into the trial.

My platelets that I was most worried about are down to 52k today, from 56k on Wednesday last week, so they have definitely started to bottom out it appears. Dr. D had already contacted the drug company, to see if there wasn't room to keep me on the same dosage, even if my platelets fell below the 50k required in the protocol. Since I had been regular on 44k during my Sprycel months, he felt there was little risk to allow me to go as low as 30k. They agreed, and made it a discretionary decision by him. Since I have full faith in him, I have no problem following his guidance. The alternative would have been to lower my dosage until the platelets came back up, or put me on a brief drug vacation which is quite common on these types of drugs.

I also got to schedule my Seattle visits, which will start every other week beginning next week. So after I leave Portland on Thursday, it will be almost a whole 2 weeks before I come back down here. While Portland has been very good to me, I won't miss the drives and being away from home and the family. 

Otherwise, still feeling good on the drug, the plan is just to keep me on the current treatment plan, and wait and see. He is very pleased with my counts and condition, that's good enough for me.

Much to catch up on

So much has happened in the past week that I have to start at middle of next week, and go forward. I had left last entry that we were waiting on Insurance coverage to come through, and it got interesting from there.

Middle of last week, we got a preliminary denial from the insurance company, which at the time didn't seem to unreasonable given that we know that they do not cover Phase 1 trial drugs. We were told by OHSU that it is unfortunately common, and usually approved upon peer review. So my dr. at OHSU was going to talk to the medical director of my insurance company, Friday morning. As luck had it, it was the same time that I was scheduled for a transplant consultation at SCCA. This is being done to make sure that we proceed as far as possible with planning for the transplant, without actually doing one. The whole idea of the drug trial, is to hopefully finally get the results we are looking for from a single pill a day.

Cynthia had her blackberry with her into the meeting, and we knew an e-mail would be forthcoming. Towards the end of the meeting, we received word that we had been denied, even after the peer review. I think OHSU was simply floored, they had not experienced this before, and my participation was at risk to say the least. Literally when we walked out of the SCCA meeting, I was resigned that I was 3-4 weeks away from a transplant.

Now Cynthia has a more assertive approach to these things than me, and after some deliberation, we decided to reach out to OHSU and see if we could still enroll in the study, and pay our portion that the trial wouldn’t cover. We didn’t know the exact costs, but we knew that if we didn’t enroll on Friday, we would miss the window and have to possibly wait 1 more month, which did not seem like a good idea given that I am on no drugs at all….

OHSU did a quick check, and said that would be fine. Although I would need to get down to OHSU that afternoon, since there is a consent form that had to be signed in person with the Dr. he was going to be out of town the following week, so we looked at each other, and simply pointed the car south. We made Portland in a little more than 3 hours, which on a Friday afternoon is a small miracle.

When we got back, we knew that we had bought us some time. We were told there were other appeals avenues, but the problem we had was that I had to be enrolled on Friday, or wait. I reached out to a former manager at MS, who put me in touch with a Director in HR. I know realize how huge that was, since while we were sitting at OHSU on Monday, the nurse popped her head in and said that it was now approved and they were getting it in writing from the insurance company. I literally felt my shoulders drop 2 inches, due to the stress we were under.

So Monday turned out to be an all day screening day. Besides a blood pressure issue, I did very well, and the team understands that it’s stress/anxiety induced, but we are closely monitoring it.

 So today (Wednesday) I am literally sitting in the recliner at OHSU, with an IV hooked up to my arm so that they can take blood without poking me with another needle. I took my first dosage of 60 mg at 9:10, and I am getting blood draws very frequently. The last one today will be at 5:10.

I think in the last week, I lived through every possible roller coaster experience I could imagine. Through this all, I can’t express how much Cynthia has done, and made me able to do. I find that I lean on her more and more, since when it becomes overwhelming, she has the ability to see things clearer. We also have had incredible help from her mother and Aunt to help with the kids while I’m out of town.

Right now, it looks that I will be calling my address Portland for at least 10 days. I can’t go home this weekend which is a bummer, but I did bring my golf clubs, and my newly acquired Big Bertha driver from Brian. I plan to vent any frustrations over the past week, on some innocent range balls…