On the right path (6 weeks on Ariad drug)

Last week, Dr. D had a PCR done. This was not a normally scheduled test, but I think he was curious to see if there was any activity by the drug. My expectations were low, since I knew during my previous drugs, that you had to really wait a full 3 months to see any measurable results. When I started Sprycel, the idea was to do a monthly PCR, but then Dr. Druker at OHSU said that was too soon, and don't expect anything. So our expectations on the 6 week PCR test (blood only) was very low.  The test also takes 1-2 weeks to come back, so we had little hope to get any news before Christmas.

 

So to my surprise, I got a notification from OHSU's health site that a new test result was available, on 10:30 PM on Monday. I know that Dr. D is pretty dedicated, but they go above and beyond. I was pretty nervous opening up the test results, not knowing what to expect. Here is the graph of how I am responding, compared to the first 9 months on the other drugs:

 

 

 

As you can tell, the drug is having an effect. In the first 6 weeks, the drug has done more than twice as much as the 9 previous months on Sprycel and Gleevec. The goal is typically to reach Log 3 reduction by 18 months, so we're definately tracking to some positive results.

 

For those who are like me and didn't quite pay enough attention in school, the log reduction is based on a 10 fold decrease for each log. So if you started at 100, then 1 log reduction is 10. Another log reduction would put you at 1 and a 3 log reduction is 0.1. The reason 3 log reduction is a major milestone, is that statistically they have shown that those who achieve a 3 log reduction by 18 months, have an outstanding chance keeping it under control long term. You will see me more and more track my progress in terms of a log reduction. But in raw numbers, I was 50 early November (you can almost think of that as 50% leukemia cells out of 1,000,000 tested), and now I am 4.4 in 6 weeks. Of course the 3 month will show more detail, but there is clearly something positive happening.

One year ago - December 3rd, 2008

Exactly one year ago, I learned that I was diagnosed with Leukemia. We didn't know at the time that it was CML, just that my white count was about 20 times what it was supposed to be. I spent some time today re-reading those e-mails from the first few days, and reliving those days. I'm not sure a professional would say that it's healthy or not to relive the darkest days of your life, but I felt it was important to understand where I was when I started this journey. I've always felt it was important to understand where you have been, before charting a course forward.

 

What sticks with me, was the incredible support and comfort I received from family, friends, co-workers those first few days and continue to this day. Our familes have stepped up to help in any way they can, and as I write this Cynthia's mother and aunt are staying with her, to help with the kids and anything else she needs, while I'm down in Portland. But the greatest impact to my current situation, is Cynthia giving me the space to get myself in a better place, and there when I needed someone to take over when I wasn't up for it. I think we have definately challanged the wedding vow that talked about in sickness and health.

 

So I ask myself, why even relive those painful moments in my past, and simply let history be ? In my case, it puts in perspective where I am now, and how much has happened since. The sky hasn't fallen, I'm not feeling ill, and Syracuse basketball is playing better than they have since 2003 when they won the National Championship. The point I am trying to make, is that life has continued, even improved in many ways. The arrival of our 2nd boy Alex has allowed us to rekindle the memories of lack of sleep and being thrown up on constantly. Christian at age 3 is allowing us to rediscover wonders all around us. Many times I wish I could see life as he sees it, I imagine that things are simple, and there is no fear in life (other than the monster in his room at times). But even then we overcome the monster by hiding under his Thomas blanket…We hide together, and we tell the monster to ‘go away’.

 

I’m feeling very educated about CML, since I have spent countless hours diving into as much information as I could gather. It’s difficult sometimes, since it’s not like I can buy a CML for dummies book at Amazon, or take at course to learn about this.  But knowledge has allowed me to take an active role in my treatment, and also be able to communicate with my doctor when needed.  I decided that I’m not settling on simply following the prescribed treatment, and being in the trial was due to reaching out and learning about other options. If it wasn’t for the trial drug, I would literally be in the midst of a transplant these days since that would be my only option. I have networked with other CML patients, and both found comfort in their stories, and in some case grief when the outcome was not positive. While Tyler is doing good, there are other friends who are worse off, so I don’t feel I can rest until we’re all out of the woods.

 

So I ask myself, where am I today ? Well, physically I am sitting down in Portland, part of the Ariad drug trial. I’m feeling great, and I’m anxiously waiting to see if the drug is working as hoped for. Compared to 3 or 6 months ago, I’m actually in a better place in that we now know that the first 2 generations of drugs, wouldn’t work since I acquired the T315 mutation. But that is all water under the bridge now. My backup plan (which was like Plan E when we started), is a bone marrow transplant, with my younger sister as a perfect match (10/10). I have to sometimes remind myself that I am only 3-4 weeks away from a transplant at any given time, so that I don’t get ahead of myself. One day I imagine I will feel differently, but for now, that is my monster in the room…

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.