First soccer game since diagnosis

I played my first soccer game on Wednesday of this week, and there was a clear difference than before diagnosis. My last game in November, I could only play in 10 minute bursts, and I had shakes after the game. Now I know that the blood cell count was causing my body to not adjust the core temperature as it should have. I was a little nervous going back playing since in the back of my mind there is some kind of connection with soccer/field turf/cancer, but I also needed to get over that hurdle quickly. While it’s nice to be out on the pitch competing, it's mostly about the social aspect, and soccer has played such a large parts of both Cynthia and my lives.

 

When our friend Andy said he needed an extra guy for his men's team, I jumped at the opportunity. While my soccer touches suffered from not having kicked the ball in 2 months, I felt much better on the field, managing to recover much more quickly after runs, and my temperature stayed great all the way through the night. Clearly the Gleevec is working, and my body has been responding well. Side effects are virtually non-existent, and besides simply reminding myself about the daily pills, CML has no physical impact on my daily life. I think emotionally it will take a little longer before I can go a day without thinking about this, but that day will come, I know it. This week has been especially hard, with Tyler's transplant on Tuesday and constantly thinking about how he's doing.

 

As with climbing mountains, you take a step at a time, and just keep moving forward.

 

PS. 2 days later and I'm still sore from the game, it's nice to feel 'normal' again

Tomorrow is Tyler's transplant day

I've had difficulty focusing today, tomorrow is Tyler's transplant day. I've seen so many good stories about transplants that I'm positive that things will go better than expected, and he will start the road to recovery. If you haven't followed Tyler's story lately, I highly encourage you to check out the latest on his blog .

 

I'd ask everyone to take a moment and either say a prayer for Tyler, or think positive thoughts. I'd also like to include mention of Scott, none of this would be possible without Tyler's father who is the donor. Let's all hope that everything goes well.

No news is I guess....no news...

Moving to a monthly schedule has been a little nerve wrecking. Having weekly blood tests were kind of reassuring, especially since the numbers were moving in the right direction. But I tell myself that Dr. P knows best, and something in my latest numbers must have given him reason to think that monthly was the appropriate cadence for now. In fact, after Feb and March, my next appointment won't be until June, assuming everything follows the happy path. Cynthia had to go through a round of testing for gestational diabetes last week, but luckily it turned out normal for all 4 of her blood draws (at least mine were all spread out, she got 4 within 3 hours)....

 

My symptoms have lessened a little, although it could help that I'm trying to be a little more active again, after a month of being on the lazy side. This lack of regular soccer is really hurting my fitness level, besides the fact that was the most motivating factor in getting me off the couch. I've heard from two amazing people, one is a mother of a son with CML, the other is a mother of 4 kids, who has CML (just living over in Duvall, the next town over). Both have had some great insight into CML and how you approach the journey you're on. It's good to keep in mind that you have CML, but ultimately it's critical that you remember that CML doesn't run your life, you do. I realize that is easier to say now, when it's a monthly thing, rather than multiple appointments a day.

 

I got to see Tyler last night, and Andrea/John and Mandy. I dropped off some DVD's I had made for him, as one possible source of entertainment as he's stuck for 5+ days as bubble boy. Good thing Cynthia screened my selection, personally I thought that the 2003 Syracuse National Championship Basketball game was appropriate selection, she didn't however. Instead I included Puerto Vallarta 2005, the one year where Julie actually let her picture be taken (soccer tourney we've gone to for a few years now).

 

Otherwise, just keeping positive thoughts for Tyler, he checks into UW tomorrow morning.

One month checkup on Gleevec

Just a quick note to update you on my dr. appointment today.

 

My WBC (White Blood Cell) count came in at 9,000 today. Normal levels should be 4 to 11k, so I'm actually normal in that category. There were 90 blasts left (I started at 12,000), if it hadn't been for those 90 blasts, the dr. said I would be in Hematologic Remission. If it wasn't for the fact that Cynthia won the bet, I'd be pretty happy with the results (her guess was 10k while I was more conservative at 22k).    

 

Also as a pleasant surprise, we got to see Tyler and his mom for almost half an hour today, they were up visiting the nutritionist, so we found them on the 6th floor. It was really nice to see and spend some time with Tyler, although my first choice would have been to meet at the Wedgwood Ale House, but oh well. He's looking good, and seems ready for what the next few weeks will bring.

 

We enter a wait and see stage at this point. My appointments go to monthly for a couple of months, then to every 3 months. He seemed pleased with my response to the medicine, and seemed to believe that my own immune system had started up again and produced what it is supposed to be. The next big milestone will be at the 6 month checkup, where I'll get the pleasure of having another bone marrow test. That will tell us where I'm at in terms of a cytogenetic response.

 

My side effects have been a few days of swelling of the eyes, and some body ache. Dr. P says that usually those symptoms lessen after a little while. Physically I'm feeling much better, and starting to try to work out again, I'm hoping to pick up some soccer here and there in the near future, to get back into game shape. I'm a little excited about possibly having more energy on the field than I have for the last 6+ months.

 

So, 2009 is starting on the right foot ! We all need Tyler's procedure to go well, besides some glowing in the dark, he'll possible be able to come home just a day or two after the transplant.  

What is CML ?

 

Happy New Years everyone ! I'm super hopeful for great results this coming year. Tyler is getting some good results, which puts him on track for the transplant in the end of January. He is seriously due for some good news !

 

I wanted to give some info on what CML is, and how they measure progress. There are some great resources out there, just do a search on CLM and Leukemia will give you some great resources. Here is how I would best describe it.

 

What is Chronic Myelogenous Leukemia (CML)

 

CML is a type of Leukemia, which inflicts about 4800 people in the US every year. A vast majority of cases occur in middle age and older people, with only a few percent of the cases inflicting children. The average age of patients diagnosed with CML is 66 year old.

 

There are 3 phases of CML, with Chronic being the least advanced and often occurring without any symptoms. I've actually learned of two cases where the person didn't even suspect anything, but went into the dr. office for some other injury or symptom. Accelerated is the next phase, with Blastic being the third and most severe phase. These phases are determined by how many blast cells (immature blood cells that never mature) are found in the blood. This is measured as a percentage. Usually chronic is from 0 to 15%, I was 8% when I first went in at about 12,000 blast cells. At my last visit, I had 1200 blast cells out of 62k, so that is roughly 2%. Ideally you are at 0%.

 

The reason this is all occurring, is that in a vast majority of CML patients, two positions on the chromosome switch place, position 9 and 22. This is also called the Philadelphia Chromosome. Now here is where an expert would have to give you a more detailed and scientific description, but basically as I've understood it, this results in a protein being created in the body, that causes the white blood cell creation to go to town.

 

Therapy

As most of you know who have read either my own blog, or Tyler's blog, the first line of treatment is a drug called Gleevec. What the drug does which is different than Chemo drugs in the past, is that it binds to the protein that is created by the Philadelphia chromosome, and prevents the chain reaction of white blood cell creation. The drug itself doesn't kill any cells, thus it's a breakthrough in how they attack CML.

 

Remission Definitions

There are 3 types of milestones that they look for. They are :  Hematologic Remission (blood), Cytogenetic Remission (cell level), and Molecular Remission. Virtually all patients get to Hematologic Remission. The goal is to get to Cytogenetic remission, where the Philadelphia Chromosome becomes undetectable. This occurs in about half the patients using Gleevec.

 

Goals

This is where I find a lot of opinions, but here are some general guidelines that I've seen.

 

• A Hematologic response is expected within 3 months. This means that your blood level numbers return to normal within 3 months.

 

• The next milestone is looking for a Cytogenetic response within 6 month (reduction in leukemia cells) s, and major Cytogenetic response within 12 months (Major Cytogenetic response means that less than 35% of the cells in the bone marrow or the blood have the Philadelphia Chromosome).

 

• Molecular response is when even the most sensitive tests cannot detect any evidence of leukemia. I'm not really sure how important the molecular response is, if someone shows a complete Cytogenetic response (0% of the cells in the marrow/blood show the Philadelphia Chromosome).

 

So what does all this mean

My first goal will be to have a hematologic response by 3 months. We're already seeing major movement in the right direction after just 12 days on Gleevec (we're really curious about this upcoming blood work since it will be after 28 days on Gleevec). After that we'll be looking for a cytogenetic response. My ultimate goal of course is a molecular response, with no evidence of any leukemia in the blood or marrow, and maybe even one day they'll tell people that it's ok to go off Gleevec, once they get enough information on how the long terms responses are.

 

Next Dr. Appointment is this coming week, Wednesday 1/7/09.