When 73k is not so bad

With everything that has happened lately, I decided to step out of the world of CML, and have an annual physical with my regular doctor, here in Woodinville. He was the one who diagnosed me with Leukemia about 1 1/4 years ago, and I hadn't been back to see him. They actually had me come in a few days early to give a blood sample so that we could discuss the results in person. The strange thing is that a blood draw these days is so routing that I don't think twice about it.

It was a surprise to me, but he knew most of everything going on with me, my results from SCCA and OHSU. I guess I didn't think much of it, but I always listed him as my primary physician, and he gets a copy of all reports and results. I was pleasantly surprised to find that he knew a lot of my case, although not the developments in the past month. So it wasn't so hard to get him caught up. He pointed out that I have the distinction of being his record WBC patient, something I'm not necessarily proud of.

He shared with me a funny story, that he got paged on Thursday night, at 12:02 AM. The page was from the lab, and he called back and they reported that there was a problem with my tests, and that they found my platelets to be 73k. They had double checked, and they were sure that the tests were accurate. He thanked them, and then looked up my latest test results from OHSU and saw that they had been 63k just a couple of weeks ago, so he knew right away that wasn't a problem. In fact, 73 is actually a positive sign for me :) It's strange how reality changes when you're dealing with something like Leukemia.

Otherwise, things were not bad. I have to improve my good cholesterol, but on the plus, my bad cholesterol was outstanding. My Triglycerides are very high, but they have been bouncing more than a 3 year old on a trampoline....My thyroid is slightly high, although steady compared to when they measured in over a year ago. The only thing we will really do short term, is healthier eating habits, get more exercise, and work on stress reductions.

Back and Public

I locked down the blog, but have decided to reverse the decision. I will defer from publishing any of my results on Ariad. GIven that people can have from a great response, to no response, it's safe to say I'm somewhere between those points. For now, it's a wait and see, all I can safely say is that I'm not any worse off.

 

For those looking to learn more about Ariad, please do contact me, while my results may not be typical, there are clearly people out there that are helped by the drug. I can also help anyone that is trying to learn more about trial procedure, it's been an interesting past 3 months. Thanks agains for the kind words of support

3 out of 4 are in

We are seeing results trickling in, so far 3 out of the 4 are in (one is still preliminary, but Dr. D says that tends to always be the same as the final. He is feverishly working on my behalf, he was even e-mailing me at 11:30 last night, so I can't thank him enough for his efforts (and his team) on my behalf. I am holding off sending out results until we have something more conclusive, until then appreciate the patience. Trust me, it's super hard to wait around for news like this.

 

I will be sending out the summary by e-mail to all those who have been following me and supporting me through this process. There is an expression in Norwegian "Tap og vinn me samme sinn" (translated to Lose or Win, with same frame of mind). So I am prepared mentally for either which way the results go.

3 month biopsy (from start of Ariad trial)

I can't believe how fast time has gone by. It just like last week that we scrambled to make our way down to Portland on a Friday afternoon, so that we could start the trial. Yesterday was our Day 1 of Cycle 4, which roughly translates to the 3 month checkup. Yesterday involved getting an Echo Cardiogram, blood draw of like 12 tubes, and then the always fun BMB. The first one at OHSU was with Dr. Mouro, where as this one was with Dr. Deininger. Unlike all previous BMB's, Dr. D does it while you're lying on your side, where as the others have you laying on your stomach. I was a little skeptical since my bones are known to be 'stubborn', and I envisioned being pushed right off the table when trying to get through the bone into the marrow. But surprisingly, it seemed to go rather smoothly, and quickly. Of course that could be contributed to Valium and Morphine that they injected into my IV right before they started. I hit a beer level of 12, which is a new high. That is my personal scale on how relaxed I feel, so basically I felt super drunk.

 

The ride home was basically sleeping it all off, thank god for Cynthia as the driver. Today was the usual soreness, and the drugs wearing off. And of course, the waiting on the results. They will probably be trickling in over the next week to 10 days.

Last week has been scary

As most of you know, our close friend Tyler had a transplant a year ago. Ever since October, I have preparing myself for the same path ever since I got on Sprycel.

 

After about 1 year of being PCRU, CML started showing up again on his tests. It was miniscule to start with, but at the 1 year anniversary post his transplant, it shows up with  cytogenetic of 2/20. They decided to do a DLI, which is basically a boost of white cells from his donor (father). After being off Tasignia for a month, he suddenly found out that he was close (if not in) blast crisis. His White count didn't show it, but he had 17% blasts in his blood. They also discovered some tumors that are related to the CML white cells, and they are looking to treat those with localized radiation.

 

The good news is that after 3 days on Tasignia, his blasts were down by 50%, and at least he is responding to the drugs again. But it just shows how fast things can change, and that a transplant not only carries risks, it doesn't guarantee results.

 

CML is a strange illness. For some it's a wild roller coaster ride, while others as my mother's friend from High School who was on the Gleevec trial, is doing great 12 years later. All we can do is grab on tightly and go for the ride, we have no other choice.

 

PS. In my warped mind, I was thinking that if I had to make the decision of a transplant back in November, I may have wanted to time it such that I was 'stuck' watching March Madness while recovering....If you ask Cynthia, my real illness here is March Madness and my love for SU Basketball....Go Cuse !

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…