Undetectable

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.

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...

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.

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.

Finishing Strong

I've actually stolen this entry from Tyler's blog, Mandy posted this recently. Tyler's father, Scott has designed a shirt in memory of Tyler, and is selling them to raise funds for Leukemia research. As most of you know, research in this field is very much has had a personal impact to me, and I hope you'll consider purchasing a shirt in support to help find not only new treatments, but a cure one day.

From Tyler's blog -

If you attended Tyler's memorial service, you may have heard that Scott (Tyler's father) was designing a t-shirt to sell as a fundraiser in Tyler's memory.  The shirts are in and I have posted a picture of the images on the shirt for you above.

They are bright green (like our beloved Sounders colors) and have a silhouetted image of Tyler running on the front.  The back of the t-shirt has a picture of Tyler with the quote "I have fought the good fight. I have finished the race. I have kept the faith."

If you would like to order a t-shirt, please contact Scott Bledsoe at (206) 546-2629.  If you can't call him, you may also try e-mailing him at mycaga@hotmail.com, but you will be more likely to catch him by phone. 

 

In addition, if you want you can simply contact me with a shirt size and I'll work with Scott to get you the shirt. Suggested donation is $20 for the shirt.

 

Hans

18 Month PCR results...

Yeah, no kidding, it's already 18th months on Ponatinib. Still staying on 60 mg, and side effects are manageable. My blood counts were steady compared to 3 months ago, and my PCR came back with "Weak Positive" again. This is the 3rd weak positive result I've had in 4.5 months, so either the decline is just happening much slower, or possibly I have bottomed out there. While it would be wonderful to be in PCRU (Undetectable), I won't complain about holding steady at weak positive either.

The tests that show the cytogenetics are still outstanding, they can take up to 3 weeks so I won't know for another week probably.

Alexander Tyler Loland turned 2 today...

Yep, our little boy turned 2, and he's quickly developing his own personality and giving us new insight into his thinking and what makes him tick every day. It was just a low key birthday party with the 4 of us, and Christian trying to 'help' Alex opening every present....oh, to be 4 again :)

What I realize sitting here, after they both have fallen asleep, probably dreaming about the cake and hoping for left overs for breakfast tomorrow, is that I have never known Alex without me having CML. When we found out about my diagnosis, Cynthia was 6 months pregnant. In fact, since Christian is so young, he will also never remember me without CML in my life.

That poses a challenge. One day, we will have to have the 'conversation'. I often think about how that will be, hoping that by then it's so far in my rear view mirror that it's more a conversation at the dinner table going something like this...."Hey Dad, I broke the car again, could I borrow yours"..."Sure son, as long as you have a $1000 deposit and note from your teacher that you're a good student...oh, and by the way, I have CML, have had it since you were born, no big deal...and don't mess with my preset radio stations again ! "....I really hope it's that simply, but I have to take a day at a time.

Tyler's passing is still impacting me a lot...It probably will for as long as I can look forward. Alex is named after Tyler, for all the right reasons...I sometimes try to look at him and hoping to see if he's grow up to have some of those traits. The numbers guy, the athlete, the kind and gentle person who graced us with his presence....I keep hoping....One thing he does have that they share in common, is a totally contagious smile...I look at Alex and suddenly a hard day, isn't such a bad day after all...Tyler could do that, he'd make you forget about the troubles around you, and focus in on the important and real stuff in life, and the not so important stuff....

So what does all this has to do with CML ? It does and it doesn't....CML is part of me, it was part of Tyler, but it's not who we are or were. I am reminded that between now and the conversation with our sons, it's about the non-CML part of life...That is what they need from me.....

When to you seek out a CML expert ?

In the CML community, there is generally an acknowledgement that there are doctors who treat CML and then there are experts on CML. Most people who are diagnosed start Gleevec immediately, and usually have frequent blood draws the first month or two, and then a follow up Bone Marrow Biopsy at 6 months post diagnosis. This is pretty standard protocol. There are however doctors who don't follow the generally accepted protocol. If the patient demonstrates achieving the standard milestones at the prescribed dates, the risk to the patient is minimal, but if the results don't match the stated goals, there needs to be a closer look at the reason why and it's appropriate at that time to determine if a second opinion is in order.

Every list would of course vary, but in general the following people are generally on every ones list. I have been fortunate enough to be treated by both Dr. Deininger (when he was at OHSU) and Dr. Mauro at OHSU. In addition, I got a consultation visit with Dr. Druker. Anyone who is on a list in the same company as them, has to be in a class of those few that we would call 'CML Experts'.

Here is a list of some of the recognized CML Experts in the US.
http://www.nationalcmlsociety.org/living-cml/cml-specialists

To my friends and family - Thank you !

I saw this article below, and it struck me how fortunate I am, and how fortunate Tyler was. I hear this often from people dealing with cancer, that many times friends and even family don't know how to respond and even distance themselves. We even heard that at Tyler's memorial service, someone who had difficulty in knowing what to say.

I had a co-worker and friend who shared with me how difficult it was to even talk about it after my diagnosis, and instead it actually became difficult to have any conversation since it was hard to figure out the right conversation, does one talk about or doesn't one...And if you don't talk about it, then does it become obvious that you're avoiding it....You get the drift, it becomes a vicious circle.

http://www.huffingtonpost.com/irene-s-levine/another-reason-why-cancer_b_816871.html

So I want to thank our friends and Tyler's too. That was one of our topics on a Portland road trip, how fortunate both of us are. We have wonderful families, and an incredible network of supportive friends. While I don't say this often, I thank everyone for their support and understanding. I think the past month has been the most difficult of this entire journey. Tyler's passing, while ever so slightly easier to deal with each day, still is just right under the surface, and I find missing him many times a day.

15 month Biopsy on Ariad

I find that I am not updating the blog as much as I should. Part of it was I just haven't had much news to share.

But to get everyone up to date, I have had 2 PCR's in the past 2 months, and both of them have come back 'weak positive'. The explanation of weak positive is that they could detect the signal of CML, but it was so low that they couldn't quantify it. So basically, I probably have somewhere between 5 and 10 bad cells out of a million. I am very close to PCRU, which is undetectable. Since the PCR test is sensitive to a million cells, and there is a trillion cells in the marrow, it simply means that once undetectable, statistically, there is still a chance that there are a million bad cells left. Considering that there were roughly 500 Billion bad cells when I started, that is a huge improvement.

We're also monitoring some chromosome abnormalities that showed up in October. They found 14% of my FISH test (200 cells) were Monosomy 7, partial deletion of the 7 chromosome pair. These mutation were found in my PH- (ie. non CML cells) and are not that uncommon. Since I have obviously responded to the Ponatinib drug (the new name for the Ariad drug) and it was in my non-CML cells, the doctors are simply monitoring it. The latest biopsy in early January showing the ratio dropping to 4%, so the condition is in all likelihood transient. There were no other issues observed with it, so both Dr. Mauro and Dr. Deininger tell me to not worry.

There are no words to express our loss

January 6th, 2011  -  One of the most decent human beings we've ever had the privilege to know and call our friend passed away at the young age of 44. We mourn the loss of this precious soul. Each day I find myself remembering how much of an influence Tyler was in our lives, and how much I miss him. He fought the battle against CML valiantly and I know you're up in heaven playing soccer, golf and fantasy sports. We will always miss you and never forget.

http://bledsoebattle.blogspot.com/