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.

20 days into the Ariad trial

Can't believe it's already been 20 days on the new trial drug. I am doing some day round trips to Portland, and I have to say that I am getting way to familiar with the route. Come December, I will only have once a week appointments, and half of those can be done at Seattle, so I know there is light in the end of the tunnel.

My BP has been very stable around 130/80 for the last 4 times, so I think the stress is off there. Today's CBC showed whites at 3.2k, platelets at 66k, and Neutraphil at 54%. In english, the only number to be a little concerned about is the platelets, since if it drops below 50k, then I may have to have a short vacation off the drug, or lower dosage. This is not abnormal for these types of drugs, in fact, on Sprycel I hit 44k on Sprycel. As for the whites, it went up to 3.9 last week, but now back to 3.2. These numbers will swing +/- 100's, even within the same day, so it's nothing to worry about. as long as I don't see higher than say 10k, I should be comfortable with the white number.

This week has another round trip to Portland on Wednesday.

14 days into Ariad trial

On the side effect front, none to minimal. Had some muscle ache last weekend, but it was just a few hours over a couple of days. Someone else had reported similar side effects.

 

Friday's appointment included an Echo-Cardiogram. If you've never seen one of these, it's basically like a sonogram of a baby, but instead they are looking at your heart, each individual chamber as well as the valves. It's pretty fascinating to lay there watching your heart beat, and see the flow of blood going through each chamber. Things looked normal per the technition, but of course a specialist has to view the results.

 

On the CBC (Complete Blood Count), my whites have been 3.9k all week (fairly stable), but my Platelets dropped to 77k on Friday. We covered on Tuesday what would happen if they drop below the 50k mark, which is a lower limit of being on the trial. Dr. D would either lower my dosage for a short period, or give me a drug vacation. I think between the two, I would probably prefer a lower dosage, since I know people getting as low as 15mg are getting a response, and I am on 60 mg.

 

This coming week is a Monday/Wednesday appoitment, in which I will do the down and back each day. The road to Portland is definately turning into the road most travelled these days, but the prospect of being able to come home to Cynthia and the kids each day, is worth the drive alone. Come 2nd week of December, it's a weekly appointment, with every other week being possible to be done in Seattle.

7 days into Ariad trial

While I was hoping this past week would be less stressful than the previous week, unfortunately it was not so. I got a call from our friend Leif on Friday, that one of the greats, Scott Lui had passed away. Some may know that Scott had battled CF his whole life, and at the age of 32 had a double lung transplant that gave him another 5 years. He was truly one of a kind, and we all will miss him greatly., The trial let me head home to be with the soccer team Friday night, and we cancelled our game and instead met at the Roanoke Tavern to share friendship and some good Scott stories. The one thing that will always resonate with me, is that how graceful and bravely Scott approach his disease, and he learned quickly in life that time and friends are precious and that you attack each day with a zest for life. He leaves a giant hole in our hearts, and our thoughts and prayers go out to Kristen and his twin girls Ruby and Stella that are left behind. Scott really was a gift to everyone who had the luck of crossing paths with him.

 

On the trial side of things, it's becoming a little more routine. I think we figured out the BP problem, it turns out that my BP is 12-20 points lower when taken manually than compared to the Blue Octopus. The nurse did a very thorough experiment this morning, measuring multiple times, and we came to the conclusion that I'm a manual kind of guy going forward. It seems that side effects of some early headaches are going away, so if this is the worst of it on the drug, I'm doing good. (Knock...knock)....Today Nancy is my nurse again for my all day testing, she is wonderful and besides the fact that I have an IV in my arm to simplify blood draws, it's really not that bad.

 

I’m off to lunch, due to not being able to eat +/- 2 hours of the trial drug, my breakfast got screwed up so I am starving...

Day 2 in Ariad trial

This morning was just a quick 30 min appointment, check vitals (still high BP), draw blood, and then take my medicine. I don't really get results or anything, and the way the meds work,, we won't really be looking at my blood counts until probably next week when I see the Dr. again. These daily visits are just with the clinical study coordinator and a nurse. The staff is just wonderful, and even after just a couple of days, I feel that I'm seing friends each day.

 

No side effects yet, so hopefully that stays. The possible side effects are headaches, skin rash, and some blurring of th eyes. Of course everyone reacts differently. The dr's thought is that more people on Sprycel experience the low blood count numbers, compared to this drug, so we shall see...Everything is going to plan, so just taking one day at a time...The only real bummer is that they want me to stay down here this weekend, but possibly home next weekend.

 

Thanks for all the well wishes and e-mails. It's been really nice to pull my computer and hear from everyone. It really made yesterday's experience so much better.