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October 26 Oct 28th - 10 days off Sprycel and other updatesBeing off Sprycel was kind of the reverse of going on the drug in the first place. Some mild headaches, that easily went away with Tylenol. Once through that, I am feeling better, and my weekly checkup numbers have shown that my White Count has increased slightly from 2.2k to 2.8k, and my platelets have gone up from 44k to 58k. My hemoglobin has also gone from 9.7 to 11.3, which is correlating to more energy.
On a different note, our friends gave us an absolute wonderful weekend. Between babysitting, bringing food, watching the kids so that Cynthia could finish up a project in the house, and a great round of golf, it was a very good weekend. Christian especially loved the sitters, he asked me today 'where are the guys' ?
So Plan A is still the drug study at OHSU. Hopefully we sorted out some insurance questions today, I've been told that I may start as early as this week. I'm eagerly awaiting a start date, we're ready to get going on this study. My numbers are slowly going up, so we're not greatly concerned, but I feel somewhat unprotected not taking any drugs. But with the T315 mutation, I know now that none of the existing meds would do anything for me long term.
On another note, during my blood draw today, Dr. P stuck his head in (I was only supposed to see the nurse), and he said "you better be nice to Tanya" ...it really caught me off guard, since I wasn't expecting to hear anything yet. While there is another test they do, he is pretty confident that she is a 10/10 match for me. We haven't heard back from Kristine yet, but having just one of them being a great match, is grealy comforting. I knew I had a good chance to find a good match on the registry, but of course a sibling match is ideal. Transplant is still Plan B, but it's nice to know that I have Tanya as a good match for me.
October 13 Oct 13th - Smoking Gun....One of the hardest things for me has been not able to explain what the heck is going on. I 'failed' Gleevec with no mutations found, and then I am having little effect with Sprycel. It's been extremely frustrating to not be able to explain what was going on. I have asked myself countless times, would I be better off going the transplant route, rather than the Ariad study, since we had no documented evidence that Ariad would be able to help me. I suppose because of that situation, starting the process of preparing for a transplant has been easy to accept, since I have no idea of what Ariad could do for me.
On Monday, I got a call from Dr. P, and he left me a message that he would try to reach me that afternoon. I’ve come to learn when a Dr. calls you and leaves a message with no content, it’s never good news. I learned that from my day of diagnosis, when my dr. asked me to come back the following day. I’ve also correlated the seriousness of the news with being able to discuss over the phone, or have to go in person.
He called back a little while later, and the news he had was related to my mutation report. For those who may remember, a mutation report was done back in June after failing Gleevec, and no mutations were found. This time, it came back and it showed that I have the infamous T315I mutation, which is known to resist both Gleevec and Sprycel (and Tasignia as well). This is probably the most known mutation of CML, since it’s documented for quite some time, and no drug to date has managed to show good results against it.
Now we know why my CBC’s were very good, but my Cytogenetics were not improving. As Sprycel/Gleevec were killing off the non-mutated leukemia cells, they were being replaced by the T315I cells which the drug was not able to latch on to. This resulted in over time the percentage of T315I cells becoming more than 20% of the overall number of stem cells (which is when they typically show up in a mutation study). This replacement of bad with worse cells has been happening over time.
This helps address a nagging question, would increase dosage of Gleevec worked for me, would increased dosage of Sprycel do the trick, or switching to Tasignia ? The answer for all is no. It’s clinically shown that none of those will address the T315I mutation. In fact, without Ariad, there would only be one option on the table, a Bone Marrow Transplant.
So, in a way, this is good news. I am hesitant to share too much about other people’s result on Ariad and T315I, but it’s safe to say that I am now a better fit for Ariad than I was before, since that drug is designed to tackle the T315I mutation as its primary objective, among others. In fact, the press release in July calls out the effectiveness on that mutation.
So I remain cautiously optimistic, I have been told that they should be enrolling me no later than the end of this month. SCCA and OHSU is coordinating my treatment, and I just learned today that they want me to discontinue Sprycel to allow my numbers to rebound before starting the new drug. It does mean a month in Portland, so I’m reading myself on all levels to be down there and focus on what I need to do. Now it’s game on, we know within 3-4 months, there will either be good news on Ariad, or transplant will be the plan of record.
Thanks again to Mandy/Tyler, Amy and Beth and Bobby who have been a wealth of information and someone to lean on. My aunts have also as usual been able to provide encouragement and support that only they seem able to do. October 08 Oct 6th - Visit at OHSU regarding Ariad trialAs Tyler put it on his blog, he and I had a road trip on Tuesday. I had learned about Ariad trial drug on the Leukemia Discussion board, by Beth who had been in the study for 3 months. She has gotten such great results that her transplant that was scheduled, is now put on temporary hold. Beth's situation is that she has a known Mutation that Gleevec and Sprycel do not work on, so she is a perfect fit for the study. She also pointed out some other sources, so just in the past week I've learned from a couple others in the study, who are also having some great results.
So Tyler and I caffeined it up in Seattle and headed to Portland. It was so nice to simply catch up with Tyler, and our 3 1/2 hour ride flew by and we were in Portland before we knew it. There is something to be said about the ability to talk to someone about pretty much everything in the world, and for those who know Tyler, he's a wealth of knowledge and insight. I know not to challenge Tyler in Golf or memory game. He even shared with me his double super secrete method of counting cards in spades....
So we met with Dr. Deininger, and it was such a comfortable meeting. He took the time to explain what I could expect on trying dosage escalation on current drugs, risks involved with all options, and how Leukemia works in your marrow. Dr. Deininger explained things very clearly and in terms I could understand. We then went into details around the study, and his nurse had brought us some documents to take and review.
Basically, while no trial doesn't have risks, I believe that I would be a good candidate for the trial. We felt that Dr. Deininger felt the same way, although he was very clear to be neutral. I never felt pressured to go one way or another, an approach I am very comfortable with. He didn't know anyone on the top of his head that had the exact scenario as me and benefiting from the study, but he was going to check.
As Tyler and I left OHSU, Tyler looked at me and pretty much said " I can't see why you wouldn't do this"... Needless to say, I'm in agreement. When I got home that night, I got to talk to Cynthia and she is fully supporting me, even with the prospect of me having to be in Portland for the better part of a month. Without her support, I wouldn't even be able to get a grasp around what I need to do. I know I've said it before, but just as Tyler clearly attributes his strength to Mandy, Cynthia is my source of comfort and strength.
So, that night I sent an e-mail to Dr. Deininger, and said I was formally sending my request to be part of the study. I heard back from him last night and he will let me know what the timeline will be. I am cautiously optimistic about what this can do for me, but I know for certainty, that I would always think about what if, if I didn't pursue this path.
I'd also like to thank everyone for their support and kind words. It's been a huge morale boost ! |
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