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Today is a few days short of my 6 month anniversary of being diagnosed. I can safely say, it's a date in my life I could surely do without. As part of the 6 month check up, is the first BMA (Bone Marrow Aspiration) since being diagnosed. This involves giving me a local on the hip bone, and some other meds to mask the pain. I opt for the lollipop, not sure what's in there, but it seems to do the job.

Having done this once already, I had a lot of anxiety this time about what I was about to go through. Unlike the first time where there was no warning that this was going to happen, I've had 6 weeks of knowing the exact date. The last 2 weeks were especially hard, but at least the sampling of the marrow is now complete. Now comes the waiting game, it will be 7-10 days before all the results come in.

This is a whole cocktail of tests.

There is the Cytogenetic test that samples 20 cells. If you are 0/20, you are considered in Cytogenetic Remission (basically level 2 out of 3). Since it only samples 20 cells, it's a high level indicator. At my initial test 6 months ago, I was 20/20 on Leukemia, so it will be interesting to compare.

Second test is the FISH test, which samples 200-300 cells from either the blood or the bone marrow, and gives you a percentage of how many of those are leukemia cells.

Third test is the PCR, which will be done on both the blood and marrow. This test is the needle in the haystack test as Dr. P said, it will test 1 million cells and give a quantitive number on how many of the cells. It's the most sensitive test available. The reason to perform the test on both blood and marrow, is that it will establish a correlation. With this, there is a chance that in the future there won't be as much a need to do a BMA, since the PCR test can be done on the blood. In the past, treatment included getting a BMA once a year, but it's moving away from that if the PCR on the blood show a sufficient low level. That was kind of exciting news.

What I did get back today, is that my White Blood Cell count was 4.59 k, which is slightly lower than last time. But it's a little higher than the time before then, so I think we may be settling into a sweet spot, with a range between 4 and 5k. This is totally normal for patients on Gleevec. One a side note, I did notice that I get a Hemoglobin number, which I hadn't really been tracking before. But from what I've learned, it a blood cell that allows the carrying of oxygen around to the muscles. So basically, I translate that to an energy number. Now what is interesting about that, is that it's up 50% over since diagnosis, which correlates to the higher energy I have had. I can really play entire soccer games now, which I couldn't just 6 months ago.

Now it's just about waiting for the results to come in, which is not one of my strong points is...simply waiting...

Today was my 2 month checkup. This has been the longest duration I've gone so far without any blood drawn or reviewing numbers, so I was naturally a little apprehensive. Leukemia is such a silent illness, that changes in your counts can change with no noticeable symptoms, until they get severe. This explains why some people only learn about their condition, when going to have some other injury or illness checked.

The good news is that I'm officially in Hematological remission  ! Given that 98% get there in a timely fashion it's not such a remarkable milestone, but it's great that it probably took me only 30 days since dx to get there. Dr P was expecting me to reach that by the 3rd month, so I'm ahead of the curve as he put it.

Those 90 blasts from last month’s tests were gone, Dr P said they were probably gone shortly after I left the building after my last appointment. I was slightly anemic before, but that was also back in normal range. Pretty much all my blood numbers were within range. My vitals were also great, blood pressure 120/70 and resting heart rate of 56. Lorraine the nurse said I was perfect, something I made sure to mention to Cynthia   Speaking of, Cynthia has simply been wonderful through these past 2 months. She has simply been amazing, and I can't imagine being able to get through the past 2 months without her. Her support during this period has been just the way she plays defense on the soccer field, solid as a rock. In fact, her nickname on the defense is 'the wall'.

Dr. P and I did discuss the next 4 months and testing, and what to expect. At my next visit in early March, we are going to conduct a  PCR test (quantitive test) that shows what percentage of cells out of a sample of 1 million, are considered Leukemia cells. This one is done on the blood, and will be our first look at how my cells are reacting to Gleevec. Our next milestone is to get to Cytogenetic remission, a test where they sample 20-30 cells, and none of them show Leukemia. After that, PCR starts telling us at a much more granular level. You'll start hearing mentions of Log - 3 in the blog, a major milestone for people with CML. That is where the PCR test shows less than 0.1% Leukemia cells for me (since my start point was 100%). 

At my 6 month checkup in June, we'll do another Bone Marrow Aspiration (BMA), which will show the level of Leukemia in the marrow as well. This will be another PCR test, so we’ll start seeing any progress at the lowest level possible.

This is all within normal treatment of CML. I think Dr. P is doing the 3 month PCR since I'm the type of person that needs data, and simply looking at the blood counts won't tell us much more going forward. I felt today was a very good discussion with Dr. P, and getting some insight into his own experience with treating CML. He's only had 1 patient out of more than 100 that he has had go to a bone marrow transplant. I've always known Tyler is special, I just never wanted him to be special in this way. Turns out that it's very seldom in CML these days to require a transplant, of course all this isn't doing anything for my friend.

Speaking of Tyler, all I know is what the Sunday entry had, they are just waiting for his numbers to start climbing, which will be a sign of Scott's marrow being integrated into Tyler’s body and going to work for him. I am looking forward to seeing him when it's possible, and look at him and know that he's cured of CML. As all of us, all I can do now is continue to pray and hope for that day to come as soon as possible.

For every 1 person that has to go through something as invasive as a transplant, there are 90 or more people, who continue to live normal lives and just have to take their pills each day. Lot of my information is from the internet, and he pointed out that it's a dangerous source since much of it is dated, and it's mostly the more serious situations that people open up to talk about. I guess he's right, if you the reader come back reading my blog in 12 months to find out that I took my pills that day, and other than a bad back from lifting Christian, I'm doing ok, I would expect you to stop reading past "today I ....".

I also played soccer again tonight, definately feeling the difference, and it's reassuring that part of my life has returned to a normal status. Now I just need to get into game shape, and shape in general, since I agreed to run the St. Patty day dash with our friends.

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

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.  

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.

I've thought about this phrase a lot lately, in more abstract terms than just lemons, but the old proverb is probable very representative in how you feel when you get dealt a bad hand. Although in my case, if I'm dealt lemons, I'd probably cut them up into nice wedge shapes, and put them on my Hefeweizen.  (For those of you on the East coast, Hefeweizen is an unfiltered German wheat beer....It goes nice with a little lemon wedge to give it a little zing). And it's symbolic for everyone that has to deal with cancer. Everyone's story is different, although we share the same underlying fears and hopes.

So I've been spending my time doing exactly what I want to be doing, and the snow has given us some precious time with Christian since Daycare has either been closed, or unreachable. I am still amazed to watch him discover the world, and all its wonders. This is a picture of Christian and I sledding down our street this weekend! After seeing the 3 year old neighbor girl on skis today, he told me he'd like to try skiing next year (in not so many words)..He was cheering as she was going by in perfect form!

Tyler had an interesting theory about what we have in common, and how 3 guys on the same soccer team (including one of our teammates that has been in remission for 5 years), all come down with blood cancer. I'm struggling with the dilemma, is it just that we're more aware of it since it's become a very personal story for us, or is there something more behind it. The last thing any of us would want is for any of our families, friends, or even friends of friends to ever have to go through this.

First of all I would like to thank everyone for their incredible outpouring of support and offers of help. There are prayers for Tyler and I being said in churches in Star Lake NY, in Ohio, and here in the Seattle area. I have literally drawn strength from your words of encouragement. Both Cynthia and I are eternally grateful to our families and friends.

Many have asked what they can do to help, and after talking to Mandy/Tyler/Cynthia, we all agreed that we'd really appreciate if you took time to read over the symptoms. Mandy has done a great write-up of the symptoms to look for that both Tyler and I had. The earlier they can detect this, the better your chances are. You can see her write-up by clicking here. (It will open a new window so you won't have to navigate away from this page).

They had drawn bone marrow and blood on the first visit, and this visit was the first follow up on the results and hopefully a treatment plan. We did get a nice call from Dr. Petersdorf's nurse on Friday that the blood results had come back, and the initial review showed that I was in the chronic phase. It did put us at ease a little, and we made an effort to get some regular stuff done like getting our Christmas tree and some shopping done over the weekend.

My hip was pretty sore over the weekend from where they did the Bone Marrow Aspiration. Thanks to Tyler I had elected to opt for all the drugs that they would give me, but when all that wore off I could feel it. Cynthia said that the Dr. P bent the 2nd needle in trying to get into my Bone Marrow. She calls it stubbornness on my part, I just think of it as self protection.

The visit at SCCA started with blood drawn, which will become the standard procedure. I was encouraged that my weight had gone up a few pounds, since I had been eating small but frequent meals. One of my problems is that my spleen is the size of a football, and putting pressure on the stomach so I haven't had big appetites. Knowing all this has explained a lot, so I have tried to adjust. On the first visit, they had also put me on a chemo drug, just short term to knock down my WBC numbers.

The visit with Dr. P went very well in our mind, his demeanor is very nonchalant about the whole thing. Don't get me wrong, I know he takes this very serious, but in describing the treatment and expectations, the first line of defense is pretty standard. I'll go weekly for a month and get measured, then monthly, and then every 3 months after the first 3 months. As Cynthia's mom put it, it's like pregnancy visits just in reverse. We got to discuss milestones and what we could expect. My spleen should return to normal in 3-4 weeks. He couldn't predict what my WBC will do since everyone reacts differently, and it will be almost a month until my normal immune system starts producing normal cells. He described it as if my normal production took a holiday since the leukemia was causing an over abundance of most cells. My next major milestone will come between 6 and 12 months, when they expect to not see any leukemia in the blood. This is again if I follow the happy path of the 90%. My hope is to start feeling better in a month or so, since Cynthia is now 6 months pregnant and she will need me more and more.

That night was a very nice surprise waiting for us at the door. Our wonderful neighbors Mike and Joy had prepared a complete meal, along with sides and toppings. She even knows me well enough to prepare it in such a fashion that allowed me to go for meat, cheese and toppings! It was perfect timing since we had already determined that we were too tired to cook.

WBC - 150,000 from being on the Chemo drug for a few days.

By the way, lost in all this is that my bad cholesterol was great, it was down to 106 ! I'm thinking that means steak once I feel better, something to look forward to !!

Update on Wednesday Dec 10th - Took my first dosage of Gleevec this morning and I seem to react to it fine. I'm very tired, but that is probably because I have a cold and just everything going on. Some side effects will be expected, but keeping our fingers crossed.

There was a note at the patient coordinators desk at SCCA - "Don't worry about the world ending today, it's already tomorrow in Australia"