Monday, May 28, 2012

May 28th - New PCR results

I'm actually a little behind, I never did post my PCR results from back in February. The PCR test takes place every time I am down at OHSU, or 4 times a year.

The tests in February were somewhat of a small shocker. While my PCR was weak positive (same as before), and FISH was clean, my cytogenetics which hasn't had evidence of CML since 3 months into the trial, suddenly showed 1 CML cell out of 20. Given the sample size, it's quite shocking statistically to have such a small sample show a CML cell. Both my previous and current doctor assured me it was a fluke, since the other two tests were not consistant, but the emotional side of me struggled with what it could mean. So, fast forward, the PCR test in May had some added significance, since it would show if there really was more active leukemia, or the fact that it was a fluke.

The May PCR was released during the automatic release process in the middle of the night. I woke up very early for some reason, and by routine this time of the year, I checked my email on my phone. And sure enough, there was a message that there were test results waiting for me at the OHSU site......

Some day I will take my blood pressure during the keystrokes of going to OHSU.EDU, and finding the test results. Nerve wrecking is an understatement. By habit, I know exactly where on the test to look, and luckily the numbers or words that I want to see, are in the first few lines....And there they were, the results were UNDETECT. A huge relief obviously, it confirms that May was a fluke, and even more importantly it dropped from last time. How much is almost impossible to know, since I am under the threshold of the test. For now, I am going to cheerish those results, especially in light of an upcoming vacation that I have been looking forward to for some time now.

Monday, February 20, 2012

Another birthday - turning 44....

Today I celebrate with mixed emotions. If I had been diagnosed with CML about 12 years ago, I would have been given a life expectancy of 3 years...Well, 3 years passed about 2 months ago, and I'm very much alive and kicking...Today I give thanks to Dr. Mauro, Dr. Deininger, and of course Dr. Druker who lead the revolution in the change in treatment. I am over 2 years on Ponatinib, and for all we know i am still doing great. Of course, I had my appointment last week and I am waiting on the latest results to come in. Dr. M is willing to bet that I am still in CCR and things are stable, but it's still nerve wrecking non-the-less.

I also think a about Tyler, a lot. I think my life would have been very different without Tyler in my life. His encouragement, him leading the way, and above all, his bravery facing CML inspire me every day. We miss you T-Bone, you'll always be in our memories

Tuesday, January 3, 2012

Turning a new page in this journey

Towards the end of 2011, I had gotten more involved with informally helping other patients. It all came from wanting to pay forward, all the support and help I had received from the likes of Beth, Yanni, Annie and Mandy/Tyler. I don't know where I would be without such incredible individuals that always took the time to listen, to offer up suggestions, and just be there to lend a supporting shoulder. I had been searching for a purpose, something that would allow me to direct my energy that I was using to find a solution to my problem, and also turn some of my thoughts into positive impact on other patients or care givers.

In the fall, I learned about the National CML Society. An organization who’s single purpose is to provide support to CML patients and caregivers and advance treatments and making connections between health care providers and patients/caregivers. The more I thought about it, the more I felt that the organization was exactly what I wanted to be involved with. I had informally benefited from some of the same services they provide, and there is a need to help patients/caregivers organize and make it easier to navigate everything CML. To make a long story short, I started getting involved, and since I was one of the first from Washington, I become the Washington state representative to the National Organization. You can learn more about NCMLS here:

My involvement lead me to attend a patient summit in Portland, and then later was asked to attend one in California. Both of the events was an opportunity to connect patients/caregivers with others, as well as introduce them to the NCMLS. In those two events, I met some wonderful people with powerful stories, and some were truly inspirational. Like the women in Portland who has lived with CML for 19 years, or the young 20 something guy who works for Disney in California and had a transplant 3 years ago. It made me aware that we are all over the spectrum in terms of our journeys, but we share some common paths that all of us go through. Always in the back of my mind, is the loss of Tyler, and my greatest wish is that nobody has to go through that ever again.

Around the same time, I was asked to do a story for Powerfull Patient, an organization focused on helping patients and caregivers through knowledge. The interview took place during the summit in Portland, and the finished product can be viewed here.

So my new mission, is to lend a hand to patients or caregivers who may need someone to listen, share what I know, and just know how to direct people to someone who can help when needed. Part of that will be reaching out to the Washington patients I have informally met, and start setting up some connection meetings in the area. I will also start using this blog, to start publishing more about research and resources available.

Oh, on another note, my PCR came back from my December visit in Portland, I am back to Weak Positive. I surprisingly wasn't too shocked about it, when you get to a low level, it doesn't take much to fluxuate from undetectable to weak positive. Of course I will hope to go back to PCRU next time, but my main goal is to be low and stable. Keep the course.

Happy New Year all, may this coming year be filled with happiness and great health !


Wednesday, September 21, 2011


Yeah, there isn't much sweeter word for a CML patient, or any cancer patient for that matter. My PCR results from my 2 year mark in Ponatinib came back as undetectable. I had been hovering at weak positive for almost a year, being oh so close, but just not there. I got the notice of waiting results late one night, and my heart rate shoots up whenever I click on the test link. And there it was, undetectable.

About 15% to 20% of CML patients reach this milestone over time. While I don't think it is that significant prognoses wise, mentally it's huge. The official status is Complete Molecular Response (CMR), ie. they tested 100,000 cells, and none of them are CML. Most trials and publications look at the prognosis of someone that reached Major Molecular Response (> 0.1%), I haven't found anything that calls out the CMR subgroup specifically.

Now before I get too excited, simple math tells us when you test 100,000 cells and there is about 1 Trillion cells in the body, undetectable does not equate to no CML cells remaining. Cured is a very difficult term for CML patients, since all it takes is one sleeping CML cell to wake up, and start reproducing. But what is does allow me to consider, is potential future participation in studies that take you off the drugs once you have been undetectable for a set number of years. At least now, the clock is ticking on being CMR. But for now, I will appreciate it for what it is.

Thursday, September 8, 2011

Cooper Harrison Loland Arrived

On August 18th, 9 PM and some change, Cooper arrived, healthy and kicking. The delivery was relatively easy, but of course that is easy for me to say. But definitely easier than both Christian and Alex. He is a little smaller than our previous other two, but length wise the same. He scored 90% in length and 50% in weight. But importantly, from a CML perspective, he is for all we can tell, a perfectly healthy Sprycel baby.

This is significant, in that there are not that many Sprycel babies, since the drug was only approved for usage in 2007 I believe, and the label still states that men (and women) should not have kids while on the drug. But working with my fantastic team at OHSU, this was ok'ed and planned. We never knew if we wanted another child, in fact, some days 2 very active boys seems too much, but once I reached a very stable low level CML (last 4 tests since Oct 10 have been weak positives), we made the decision that life isn't going to be put on hold.

On a different note, I just had my 2 year on Ariad, or Cycle 24 as they call it. Ariad goes by a 28 day month, so it's not a full 2 calender years. It's amazing how time has gone bye, I ran into Nancy, she is one of the nurses in charge at OHSU, and I got to talk to her at some length. She was the first nurse I had down there, the first day. The first day still rings loud and clear in my mind, the fear of taking a compound that hasn't been tested that much on humans, the anxiety of not knowing what it will do to you, an the fear of what it will do to you. Will it work, won't it work, and is all this for not...All history now, but reminds me that this is a life long journey. It was so nice to share what has been happening with Nancy, since she spent the entire first day with me, drawing blood every hour, and listening to my story. Walking through the halls down there, I realize that nurses are either amazing at remembering names, or they actually do take interest in patients. I had 3 nurses call me by my first name, just walking around. When I think back, I have spent a lot of time at OHSU over the past 2 years.

So while no results are back of course yet, other than my CBC's that are on the lower side of normal, I did learn that I am now going to start going to OHSU every 6 months instead of every 3. They still will require a biopsy since my abnormal chromosomes that have shown up in the past year, but if not for that I wouldn't even need a BMB. Maybe one day I will be completely boring, oh, that sounds nice...

Monday, August 1, 2011

Missing #11

I'm a little late posting my latest results, it was mostly a non-event. My PCR continues to be weak positive. My cytogenetics showed 2/18 were Monosomy 7, and on fish it was 1/200 cells. So it continues to trend down, or at a minimum have no growth advantage. My CBC counts were all continuing to trend in the right direction, even my platelets were up to 90k. Overall, on the right track.

My next visit at OHSU will be in early September, after which I am supposed to switch to every 6 months from then on. It will be some adjustment to go from very regular monitoring and feedback, to as much as 6 months between dr. visits. I will continue to get my blood drawn, but only see Dr. M every 6 months.

On a different note, work has finally slowed down a little, either due to natural reasons, or that I am mentally preparing for upcoming paternity leave in a couple of weeks. Everything is going great with Cynthia, I don't know how she can keep the same pace. The boys continue to come up with new things almost every day, and at times Christian can be just the sweatest boy. I say at times, since he can also throw a fit and tell me that I'm not his best friend anymore either. I am impressed that he does use his words to communicate as much as he does, it helps that he tells us what bothers him, and we talk things out.

We had a soccer tournament this past weekend up in Bellingham, our yearly trip up north. While Tyler hadn't been able to play the past years, he did participate in the Friday golf last year. While golfing we talked about lineups and how he would line up the team. Tyler had a unique sense of bringing out the best of people, in no matter what situation. I was reminded this weekend that Tyler wore jersey #11, and thanks to some quick thinking, the shirt was put aside from the jersey pile. It is just another reminder how integral Tyler was in my life, all our lives. For many years, the team name was 'Bledsoe Triangle', after a formation that Tyler had thought through, and would fit our playing style. We had many successful seasons and tournaments applying Tyler's methodology.

While life goes on, it's just not the same without him. I know he was watching over us this weekend, cheering us along. We miss you #11.

Wednesday, April 6, 2011

Added stress

While my CML has been doing great, with 3 recent 'weak positives' in a row, I have been having a transient problem with Monosomy 7 coming and going since Oct last year. This conditions shows up in the cytogenetics report, where they look at a small set of cells that are dividing. In my layman's terms, it's looking at the pregnant population, since that is an indicator of the future. The del 7 is actually in the non-CML cells, ie the healthy ones. I haven't seen a CML cell (Ph+) show up in this report since January of 2010. 

In October, 3/20 cells had a deletion of the 7th chromosome (intestinal deletion), while in January it was 0/20. But this last test had 4/22 with Monosomy 7. My previous dr. (Dr.D) assures me that it appears to be transient, meaning here today, gone tomorrow, etc. What is the critical question is to look to see if there is any dysplacia. That could indicate MDS, or myelodysplastic syndromes. This is often called pre-leukemia which can cause your marrow (factory of producing blood cells) to crash. There are no signs that my marrow is being impacted by this condition, and it's perfectly ok to have this condition, with no symptoms and no need to change course in treatment.

But, while I have 2 of the top doctors in the world telling me not to worry since there are no signs of MDS, it's still hard to put it aside. It's ironic that I can feel totally comfortable about my CML, and worry about something else. Ironically, the cure for MDS is a Bone Marrow Transplant.

But, I won't get ahead of myself. While it's a stressful time with everything going on, both my life and others, I have to remember to cherish every day and make it a good one. Can't predict what the future will hold.