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, May 28, 2012
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
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: http://www.nationalcmlsociety.org/
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. http://www.patientpower.info/video/hans-loland-a-cml-diagnosis-and-a-miracle-baby?autoplay=1
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 !
Hans
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: http://www.nationalcmlsociety.org/
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. http://www.patientpower.info/video/hans-loland-a-cml-diagnosis-and-a-miracle-baby?autoplay=1
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 !
Hans
Wednesday, September 21, 2011
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.
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...
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.
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.
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.
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.
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/
http://bledsoebattle.blogspot.com/
Thursday, July 29, 2010
9 Month Checkup (Post Ponatinib)
Wow, I can't believe it's been 9 months since I started the trial. A lot has happened recently. My doctor was offered a chair person at University of Utah, and I am very happy for him and the opportunity it gives him. The silver lining was that the replacement doctor is Dr. Mauro, someone who is equally recognized as one of the top world experts on CML and shares Dr. Deininger's increadible humanity. Dr. M treated me the first week down at OHSU, so it was an easy transition back to his care.
As much as I'd like to feel relaxed now that I reached CCR at 3 months and MMR at 6 months, waiting on results are surprisingly difficult. Unlike previous tests where I felt I had nothing to lose, now I feel that I have everything to lose. It's nerve wrecking to say the least.
So, down to the numbers. I am still Fish and Cytogenetic negative, and my PCR is 0.039% this time. Statistically that is roughly the same as my 0.066% 6 weeks ago, and my 0.036% from 3 months ago. Slow and stable.
Sunday, June 6, 2010
Breaking the silence
I have heard from a few friends lately that they were wondering what was going on with me, based on the lack of postings on my site in the past few months. I have kept myself from posting anything trial related, which has limited my ability to share my CML journey. After I found my postings about personal thoughts regarding our 3 year old Christian posted verbatim on a Yahoo financial discussion group back in December, I felt a line had been crossed. All along my intent of the blog was simply to keep friends and family up to date on what was going on, as well as hopefully benefit others who are either starting their CML journey or at a crossroad. I have often found the advice and suggestions of patients and caregivers invaluable in evaluating my own predicament, as well as learning how to communicate with my own medical team. Knowing that what the difference between a lavender and green cap on a vial, has already once ensured that a PCR test wasn't missed, even though it was scheduled.
Disclaimer : If you are here looking for medical insight into helping you make a financial decision on the drug company Ariad, please keep the following in mind:
1) I have been, and still on 60 mg dosage. This is not what will most likely be FDA approved, so hence statistically I should be excluded from the sample that evaluates effectiveness of the drug.2) I am a statistic of one. What works or doesn't work for me, may not translate to others.
I have become too painfully aware that there is no single medicine that works for everyone. There are people who Ariad doesn't work for, and I continue to pray that they find something , or if they have to go through a transplant, they are in the best possible medical hands and have faith to carry them through. All of us are one test away from a crossroad in our lives, so as CML patients, we're only as good/bad as our last test.
So what is happening with me? Well, I have been on 60 mg for more than 7 months now. I officially reached Major Molecular Response at my 6 month, and I achieved Complete Cytogenetic Response at my 3 month. I continue to maintain both MMR and CCR. Combined these are a major milestone with treatment of CML, so it has given us some breathing room. Officially my log reduction is 3.5. My white count that early on was in the 2k range, has been in the 3k range for the past 3 CBC's. My platelets are also in the 60 to 70k range. Everything is pretty stable, with no Grade 3 or Grade 4 side effects. The most inconvenient side effects are fatigue and some other minor ones. The fatigue is hard, given that I have a draining job at times, I am usually spent by the time the kids go to bed at night, and I'm lucky if I get a second wind. Unfortunately (or fortunate as it may be) I love my job and what I do, so I do pour a lot of myself into it, and can't even imagine slowing down, but I may try to take some personal days this summer just to give myself some days of rest.
Here is my log reduction timeline:
I am down to travelling once a month to OHSU in Portland, and I do one CBC a month here in Seattle. I do have to continue to have a Bone Marrow Biopsy (BMB) every 3 months per the trial protocol, but somehow they are getting easier and easier. It probably doesn't hurt that the last 2 times I have opted for drugs through an IV. If I wasn't in the trial and I had the results I have, I believe BMB would have gone down to every 6 months, and then yearly after that.
So if you are a patient or caregiver of someone with CML, then I want to share with you that there is hope out there. The progress that is being made in new drug therapies is amazing, and you will want to make sure that you consider all your options before making a decision. Transplant may still be a viable option for you, but for many others, there are new options out there that are worth considering.
With all that said, I want to call out that Tyler is still fighting the battle, harder than anyone I know. He finished his recent chemo therapy, and is now back on Tasignia. His white counts are coming up to reasonable levels, but they are still searching for the best solution out there for him. Please keep him in your prayers. If you already are not following his blog, here is a link to it. http://bledsoebattle.blogspot.com/
Keep hope alive,
Hans
#1303 in Zavies Club (which you get when you're CCR).
Monday, March 29, 2010
When 73k is not so bad
With everything that has happened lately, I decided to step out of the world of CML, and have an annual physical with my regular doctor, here in Woodinville. He was the one who diagnosed me with Leukemia about 1 1/4 years ago, and I hadn't been back to see him. They actually had me come in a few days early to give a blood sample so that we could discuss the results in person. The strange thing is that a blood draw these days is so routing that I don't think twice about it.
It was a surprise to me, but he knew most of everything going on with me, my results from SCCA and OHSU. I guess I didn't think much of it, but I always listed him as my primary physician, and he gets a copy of all reports and results. I was pleasantly surprised to find that he knew a lot of my case, although not the developments in the past month. So it wasn't so hard to get him caught up. He pointed out that I have the distinction of being his record WBC patient, something I'm not necessarily proud of.
He shared with me a funny story, that he got paged on Thursday night, at 12:02 AM. The page was from the lab, and he called back and they reported that there was a problem with my tests, and that they found my platelets to be 73k. They had double checked, and they were sure that the tests were accurate. He thanked them, and then looked up my latest test results from OHSU and saw that they had been 63k just a couple of weeks ago, so he knew right away that wasn't a problem. In fact, 73 is actually a positive sign for me :) It's strange how reality changes when you're dealing with something like Leukemia.
Otherwise, things were not bad. I have to improve my good cholesterol, but on the plus, my bad cholesterol was outstanding. My Triglycerides are very high, but they have been bouncing more than a 3 year old on a trampoline....My thyroid is slightly high, although steady compared to when they measured in over a year ago. The only thing we will really do short term, is healthier eating habits, get more exercise, and work on stress reductions.
Monday, March 1, 2010
Back and Public
I locked down the blog, but have decided to reverse the decision. I will defer from publishing any of my results on Ariad. GIven that people can have from a great response, to no response, it's safe to say I'm somewhere between those points. For now, it's a wait and see, all I can safely say is that I'm not any worse off.
For those looking to learn more about Ariad, please do contact me, while my results may not be typical, there are clearly people out there that are helped by the drug. I can also help anyone that is trying to learn more about trial procedure, it's been an interesting past 3 months. Thanks agains for the kind words of support
Saturday, February 6, 2010
3 out of 4 are in
We are seeing results trickling in, so far 3 out of the 4 are in (one is still preliminary, but Dr. D says that tends to always be the same as the final. He is feverishly working on my behalf, he was even e-mailing me at 11:30 last night, so I can't thank him enough for his efforts (and his team) on my behalf. I am holding off sending out results until we have something more conclusive, until then appreciate the patience. Trust me, it's super hard to wait around for news like this.
I will be sending out the summary by e-mail to all those who have been following me and supporting me through this process. There is an expression in Norwegian "Tap og vinn me samme sinn" (translated to Lose or Win, with same frame of mind). So I am prepared mentally for either which way the results go.
Wednesday, January 27, 2010
3 month biopsy (from start of Ariad trial)
I can't believe how fast time has gone by. It just like last week that we scrambled to make our way down to Portland on a Friday afternoon, so that we could start the trial. Yesterday was our Day 1 of Cycle 4, which roughly translates to the 3 month checkup. Yesterday involved getting an Echo Cardiogram, blood draw of like 12 tubes, and then the always fun BMB. The first one at OHSU was with Dr. Mouro, where as this one was with Dr. Deininger. Unlike all previous BMB's, Dr. D does it while you're lying on your side, where as the others have you laying on your stomach. I was a little skeptical since my bones are known to be 'stubborn', and I envisioned being pushed right off the table when trying to get through the bone into the marrow. But surprisingly, it seemed to go rather smoothly, and quickly. Of course that could be contributed to Valium and Morphine that they injected into my IV right before they started. I hit a beer level of 12, which is a new high. That is my personal scale on how relaxed I feel, so basically I felt super drunk.
The ride home was basically sleeping it all off, thank god for Cynthia as the driver. Today was the usual soreness, and the drugs wearing off. And of course, the waiting on the results. They will probably be trickling in over the next week to 10 days.
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