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.
Wednesday, April 6, 2011
Tuesday, March 29, 2011
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
Saturday, March 26, 2011
18 Month PCR results...
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.
Wednesday, March 2, 2011
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.....
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.....
Thursday, February 17, 2011
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
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
Tuesday, February 8, 2011
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.
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.
Tuesday, January 25, 2011
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.
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.
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