PCR results showed a drop of nearly 28% from my December 2010!
This puts me at 0.818...
We finally broke the 1% barrier. Still a long way to go, but with our eye on the prize I'm hopeful we can get a MMR (Major Molecular Response).
Thursday, August 18, 2011
Monday, December 6, 2010
Hello - anybody out there?
I know it's been a year...so the answer to the question is - yes, I'm still alive.
and well. actually.
My recent blood tests were promising and showing little signs of disease progression and I am...
1. in hematologic remission
This means that my CBC results (complete blood count) stabilized in a generally normal range.
2. in cytogenic remission
This means the results of my FISH test (Fluorescent in situ hybridization) shows that better than 90% of the 500 test cells are normal.
3. achieved ‘MMR’ or Major Molecular Response.
This means that the number of cells in my PCR-ABL (polymerase chain reaction test for the ABL gene) has consistently dropped. Two years ago this number was around 2.5% of my blood had the PH+ (Philadelphia 9-22 translocation gene) - at the last test this dropped to 1.4%. People that truly be the disease are in the 0.001 percent rage, but I’ll take downward trending at this point.
Lucky. plain and simple.
and well. actually.
My recent blood tests were promising and showing little signs of disease progression and I am...
1. in hematologic remission
This means that my CBC results (complete blood count) stabilized in a generally normal range.
2. in cytogenic remission
This means the results of my FISH test (Fluorescent in situ hybridization) shows that better than 90% of the 500 test cells are normal.
3. achieved ‘MMR’ or Major Molecular Response.
This means that the number of cells in my PCR-ABL (polymerase chain reaction test for the ABL gene) has consistently dropped. Two years ago this number was around 2.5% of my blood had the PH+ (Philadelphia 9-22 translocation gene) - at the last test this dropped to 1.4%. People that truly be the disease are in the 0.001 percent rage, but I’ll take downward trending at this point.
Lucky. plain and simple.
Tuesday, November 10, 2009
I know its been a long time...
and I don't intend to keep this thing particularly updated unless there is some sort of event or notable news.
and here's some news:
Click HERE.
For those of you who don't want to make the jump, its an article about Kareem Abdul Jabbar being diagnosed with CML. Wooo Hoooo, me and Kareem, blood buddies.
and here's some news:
Click HERE.
For those of you who don't want to make the jump, its an article about Kareem Abdul Jabbar being diagnosed with CML. Wooo Hoooo, me and Kareem, blood buddies.
Monday, August 17, 2009
Updates.
So I'm pretty happy.
I had my six month appointment on Monday, August 10 with Dr. Cripe and here are the results:
WBC - 3.7 (low, but not horrible).
Hgb - 13.9 (again, low, but not horrible).
Hct - 39.6 (yep, low, but not horrible)
Platelets - 157,000 (yeehaw, this one actually falls in the normal skew).
Anyway, the numbers above are not really troublesome, but they don't really tell much of a story. At this appointment they also took blood for my PCR-ABL test that quantifies the number of PH+ cells in my body. I can't really explain the scale of which its measured, but I went from a 4.01 in Feb 09 to a 2.04 in Aug 09. In short, the percentage of PH+ RNA molcules was cut in half. Really good numbers are in the 0.00x range, but at least its going down.
Onward and upward.
I had my six month appointment on Monday, August 10 with Dr. Cripe and here are the results:
WBC - 3.7 (low, but not horrible).
Hgb - 13.9 (again, low, but not horrible).
Hct - 39.6 (yep, low, but not horrible)
Platelets - 157,000 (yeehaw, this one actually falls in the normal skew).
Anyway, the numbers above are not really troublesome, but they don't really tell much of a story. At this appointment they also took blood for my PCR-ABL test that quantifies the number of PH+ cells in my body. I can't really explain the scale of which its measured, but I went from a 4.01 in Feb 09 to a 2.04 in Aug 09. In short, the percentage of PH+ RNA molcules was cut in half. Really good numbers are in the 0.00x range, but at least its going down.
Onward and upward.
Tuesday, August 4, 2009
Me Likely Keithy
Not much health stuff going on right now. I have an appointment to see Dr. Cripe next week which will be my 6 month check-up. This appoint is usually pretty short but does include a CBC and my PCR_ABL test. Keep your fingers crossed - the last one didn't go so well :(.
On a related note - Keith Olbermann had a pretty good commentary that I'd like to share with all of you. Its largely political affiliation agnostic (though with a slight Democratic bend).
On a related note - Keith Olbermann had a pretty good commentary that I'd like to share with all of you. Its largely political affiliation agnostic (though with a slight Democratic bend).
Visit msnbc.com for Breaking News, World News, and News about the Economy
Sunday, June 28, 2009
Needless to say - things have slowed down a bit.
Eli and I are working on doing some stop-motion movies with Playmobil, here is our first stab. The Music is courtesy Howard Shore from 'Lord of the Rings:Return of the King'.
Wednesday, May 6, 2009
yeah.
sorry. been a month. I know.
Guess that means things are going well. April is a busy time around here, my birthday, Maris' birthday, Kris and my anniversary (7 years, thank you very much), Kris' birthday in early May and Mother's Day.
This year I got Kris a kayak for the anniv/birth/mothersday extravaganza. Its pretty cool really - 15' long and inflatable. It's essentially the same material as a white-water raft and designed for two adults (or single if need be). Attached is a photo where we went for a literal dry run. It took about 20 minutes to inflate, but I'm confident we can get that down to 10 now that we know what we're doing.
Guess that means things are going well. April is a busy time around here, my birthday, Maris' birthday, Kris and my anniversary (7 years, thank you very much), Kris' birthday in early May and Mother's Day.
This year I got Kris a kayak for the anniv/birth/mothersday extravaganza. Its pretty cool really - 15' long and inflatable. It's essentially the same material as a white-water raft and designed for two adults (or single if need be). Attached is a photo where we went for a literal dry run. It took about 20 minutes to inflate, but I'm confident we can get that down to 10 now that we know what we're doing.
Tuesday, April 7, 2009
My Garden.
Ok, its not much now - but wait. Built entirely of cedar and filled with a blend of mushroom compost, top soil and peat. Oh yeah, I also added two dozen night crawlers.
Good Bye Mrs. Olbermann
Very few people like Keith the way I do. I find him entertaining and at the very least - leaning the way I do. He lost his mom to breast cancer this week and did a wonderful tribute to here. Enjoy.
Visit msnbc.com for Breaking News, World News, and News about the Economy
Thursday, April 2, 2009
seriously, has it been a month.
I'm doing fine...aside from an infected finger (which was saved through the miracles of Neosporin), all clear.
I unfortunately didn't plan ahead very well and do not have pictures to post from my latest project, but I'll share anyway. We decided to plant a raised bed garden this year. The kids are now old enough to learn about plants, the planting process, food sources, etc and frankly, I just wanted to do it. I built the beds last weekend out of 2x4 cedar stock - they are just shy of 1' deep and will be filled with Mark's Mix ( a mixture of mushroom compost, peat and top soil ). I have two beds that are 4' x 8' with pvc canopy supports so I can top them with plastic to extend the growing season about a month in either direction.
We started seeds a couple weeks ago and Maris helps me keep them watered every other day. Our beans and peas are already about 7" tall and everything else is coming along nicely ( herbs, carrots, cherry tomatoes, beets, radishes and a lettuce mix ). I hope to get them all outside by mid next week so we can really let them grow. I suspect the beans are already root bound so waiting any longer is not an option. I should have probably waited another month to get this stuff going, but I refuse to wait until July before we can start harvesting.
Anyway - that's it. Pretty exciting - great project ( under budget ).
Next up, religion by John. More soon.
I unfortunately didn't plan ahead very well and do not have pictures to post from my latest project, but I'll share anyway. We decided to plant a raised bed garden this year. The kids are now old enough to learn about plants, the planting process, food sources, etc and frankly, I just wanted to do it. I built the beds last weekend out of 2x4 cedar stock - they are just shy of 1' deep and will be filled with Mark's Mix ( a mixture of mushroom compost, peat and top soil ). I have two beds that are 4' x 8' with pvc canopy supports so I can top them with plastic to extend the growing season about a month in either direction.
We started seeds a couple weeks ago and Maris helps me keep them watered every other day. Our beans and peas are already about 7" tall and everything else is coming along nicely ( herbs, carrots, cherry tomatoes, beets, radishes and a lettuce mix ). I hope to get them all outside by mid next week so we can really let them grow. I suspect the beans are already root bound so waiting any longer is not an option. I should have probably waited another month to get this stuff going, but I refuse to wait until July before we can start harvesting.
Anyway - that's it. Pretty exciting - great project ( under budget ).
Next up, religion by John. More soon.
Tuesday, March 3, 2009
the cure.
Gleevec is not a curative drug. Howevever, a recent study showed that with Gleevec, 86 percent of patients are still alive after 7 years (I know, that also means that 14 in 100 still die in the same time frame).
An article on CNN.com (click here) talks about approaching cancer more as a chronic condition vs curative treatment. In short, treating cancer more like we treat heart disease and diabetes. For me, that's kinda what we're already doing. I often talk about the challenges/mortality of the stem cell/marrow transplant which to date is the only cure. Most doctors seem to think that managing chronic conditions is natural progression in medicine and one that can benefit overall patient outcomes.
So, what do you think?
An article on CNN.com (click here) talks about approaching cancer more as a chronic condition vs curative treatment. In short, treating cancer more like we treat heart disease and diabetes. For me, that's kinda what we're already doing. I often talk about the challenges/mortality of the stem cell/marrow transplant which to date is the only cure. Most doctors seem to think that managing chronic conditions is natural progression in medicine and one that can benefit overall patient outcomes.
So, what do you think?
Tuesday, February 24, 2009
sooo....
I got my PCR-ABL news yesterday and unfortunately, it wasn't exactly what I was looking for.
The number of PH+ (leukemia cells) was up instead of down. Needless to say, we'd like it headed in the other direction. Its all a little to confusing to understand (Majors, Minors, PH+, etc)
If there is any good news to be derived from this - it is the fact that these results were from the Clarian (local hospital) lab and my other results were from the lab out West (Washington or Oregon I think). In this type of test, the results are very dependent on the lab and the only way they really measure progress is in reductions of the number of cells vs the actual number of cells.
My oncologist seems to think that I am really in no danger right now so we are sticking with the six month routine at which point I'll be tested again using the Clarian lab. His confidence reassures me, however I'll probably have a lot more on my mind in the coming months until we figure out what is going on.
I doubt that I am failing the Gleevec and it should be noted that I'm on the lowest active dose right now so we can always increase it if need be. Still, the news weighs a little heavily on me.
Onward and upward.
The number of PH+ (leukemia cells) was up instead of down. Needless to say, we'd like it headed in the other direction. Its all a little to confusing to understand (Majors, Minors, PH+, etc)
If there is any good news to be derived from this - it is the fact that these results were from the Clarian (local hospital) lab and my other results were from the lab out West (Washington or Oregon I think). In this type of test, the results are very dependent on the lab and the only way they really measure progress is in reductions of the number of cells vs the actual number of cells.
My oncologist seems to think that I am really in no danger right now so we are sticking with the six month routine at which point I'll be tested again using the Clarian lab. His confidence reassures me, however I'll probably have a lot more on my mind in the coming months until we figure out what is going on.
I doubt that I am failing the Gleevec and it should be noted that I'm on the lowest active dose right now so we can always increase it if need be. Still, the news weighs a little heavily on me.
Onward and upward.
Monday, February 9, 2009
Quickie.
I got stuck this morning...
It was only one stick with the usual 3 vials to follow. I'm sick as the proverbial dog so I wasn't expecting much, but I'll be damned - good numbers.
Whities - 4.4K
Platelets - 156K
HGB - 14.6
Hell, I'm almost normal.
I won't get the all important PCR-ABL results back for a couple weeks. The good news is, Clarian is now processing the results themselves so I am told I will know how good or bad things are in half the time. I'd be delighted to hear that I'm in a cytogenic remission or some variant of it. At this point, I think the only measurement isn't really remission and really more of how many log reductions in Leukemic/PH+ cells they find. My first results last summer were terribly good so I am hopeful for a turn around.
Stay tuned.
Still kicking, one year down.
It was only one stick with the usual 3 vials to follow. I'm sick as the proverbial dog so I wasn't expecting much, but I'll be damned - good numbers.
Whities - 4.4K
Platelets - 156K
HGB - 14.6
Hell, I'm almost normal.
I won't get the all important PCR-ABL results back for a couple weeks. The good news is, Clarian is now processing the results themselves so I am told I will know how good or bad things are in half the time. I'd be delighted to hear that I'm in a cytogenic remission or some variant of it. At this point, I think the only measurement isn't really remission and really more of how many log reductions in Leukemic/PH+ cells they find. My first results last summer were terribly good so I am hopeful for a turn around.
Stay tuned.
Still kicking, one year down.
Wednesday, January 28, 2009
ok. ok. i'm sorry.
needless to say, I'm down to about one post per month (two at best).
In this case, the old adage - no news is good news. I don't go back to the doc until early February and even then I probably won't see blood results back for three or four weeks (this is the test they send out of state to be read). I am hopeful that it will say that I am well on my way to a cytogenic response but have prepared myself in the event that it is not the case. I am still on 400mg daily of the Gleevec which is the lowest dosage so they could probably just increase my intake if I don't get the results Dr. Cripe is looking for. The only downside is going to 600mg daily would increase the cost of my drugs $1,500/month (of which I would still only pay $30) which is probably killing our HR person at the office.
Kristin is hopefully boarding a plane home as we speak. Been a busy travel month for her with a couple trips to NYC and one to Chicago. This in turn means a little more single parenting for me - though our kids a pretty awesome and easy 90% of the time. Even tonight I've got them both fed, read and happily in bed by 7:30 (which is good since our little guys start their day at exactly 6am).
It was a pretty awesome day outside. 12" of snow in fell last night - very much reminds me of home. Only 9 of us made it into the office (3 on time) so it was a really quiet day. I spent the first half on snow removal duty which included a shovel, snowblower and Bobcat and the second half knocking out some boring research that I had been putting off.
Eli turns 5 tomorrow, hope to get some photos of the festivities after the weekend.
Anyhoo.
I'll be around.
In this case, the old adage - no news is good news. I don't go back to the doc until early February and even then I probably won't see blood results back for three or four weeks (this is the test they send out of state to be read). I am hopeful that it will say that I am well on my way to a cytogenic response but have prepared myself in the event that it is not the case. I am still on 400mg daily of the Gleevec which is the lowest dosage so they could probably just increase my intake if I don't get the results Dr. Cripe is looking for. The only downside is going to 600mg daily would increase the cost of my drugs $1,500/month (of which I would still only pay $30) which is probably killing our HR person at the office.
Kristin is hopefully boarding a plane home as we speak. Been a busy travel month for her with a couple trips to NYC and one to Chicago. This in turn means a little more single parenting for me - though our kids a pretty awesome and easy 90% of the time. Even tonight I've got them both fed, read and happily in bed by 7:30 (which is good since our little guys start their day at exactly 6am).
It was a pretty awesome day outside. 12" of snow in fell last night - very much reminds me of home. Only 9 of us made it into the office (3 on time) so it was a really quiet day. I spent the first half on snow removal duty which included a shovel, snowblower and Bobcat and the second half knocking out some boring research that I had been putting off.
Eli turns 5 tomorrow, hope to get some photos of the festivities after the weekend.
Anyhoo.
I'll be around.
Wednesday, January 7, 2009
just a quickie.
No time to write. Working on my next hobby. Backyard Chickens. Still need to check and see if Marion County zoning allows it, but stay tuned. If you're interested - you can check out some more info here.
Monday, December 15, 2008
The holidays...
We did our part this year to keep the economy going. Lots of great, fun gifts for the kids. Around October, I decided to try and make a few 'heirloom quality' toys for Maris. She had really wanted crib and high chair for her dolls and the stuff in the stores was grade A crap. I spent a couple hours over the last two weekends putting some stuff together that I'm really proud of. It still needs a once over sanding and some poly, but take a look.
We also adopted a family of four through the United Christmas Service. This year we have a single hispanic mom with three boys (2, 6, and 9). We were able to get them coats, hats, gloves, bedding, cookware, towels, toys, books and more. I think it was the first time I every went to Walmart and had two heaping carts of goods. I anticipate we'll deliver this stuff next week and am really looking forward to seeing their faces when we pull up with a van full of gear. Admittedly, we probably over did it on them - but Kris and I are hopeful that we can make this the best Christmas the boys have ever had.
We also adopted a family of four through the United Christmas Service. This year we have a single hispanic mom with three boys (2, 6, and 9). We were able to get them coats, hats, gloves, bedding, cookware, towels, toys, books and more. I think it was the first time I every went to Walmart and had two heaping carts of goods. I anticipate we'll deliver this stuff next week and am really looking forward to seeing their faces when we pull up with a van full of gear. Admittedly, we probably over did it on them - but Kris and I are hopeful that we can make this the best Christmas the boys have ever had.
Thursday, November 20, 2008
I'm back.
Total Bilirubin - 4.0 (very high, but normal for me)
Whities - 3,800 (low for you, good for me)
Hemoglobin - 14.6 (normal!)
Hematacrit - 40.3(normal!)
Platelets - 167,000 (normal!)
ANC - 1,800 (low for you, good for me)
Chest Xray - normal
Good counts and good diagnostics. Been having some problems sleeping/breathing for the past three weeks, went to see Dr. Cripe to get to the bottom of it.
His recommendation. Slow down. Take some time. Relax.
I'm going to try and do this. Been a wild couple weeks in my personal and work life, starting to wonder if it has taken a toll on my physical health. I have good people around me but I seem to forget that I can't do it all, all of the time.
It's nice to get some affirmation from the doc and his practitioner (Theresa). My only complaint is that Theresa always makes me cry. She tells me it will be ok (which I know it will) but somewhere between her hug and her soothing tone, I lose it.
Admittedly, its kinda unfair. Here I was in the waiting room with essentially a winning lottery ticket as far as blood cancer's go and I'm still worrying about me. Even today, I'm sitting next to a girl probably 10 years younger than me, hair free with a chest port. Based on what she was saying, I'm betting she was only diagnosed a few months ago (she didn't know the jargon but I understood what she was saying). It's a pretty unfair world we live in - and she was living proof.
I can't imagine working in that place.
Cancer get's you an immediate wave but sometimes you have to work for it. For example, when I went to get my chest xray today - the woman at the counter was really busy and a little unpleasant...until she read my chart and they it was almost like 'oh shit, this guy has enough on his plate and shouldn't have to deal with my angry ass'. She pretty much pulled a 180 and was delightful for the rest of our time together.
Better get moving. Feeling better already now that my counts are solid.
Whities - 3,800 (low for you, good for me)
Hemoglobin - 14.6 (normal!)
Hematacrit - 40.3(normal!)
Platelets - 167,000 (normal!)
ANC - 1,800 (low for you, good for me)
Chest Xray - normal
Good counts and good diagnostics. Been having some problems sleeping/breathing for the past three weeks, went to see Dr. Cripe to get to the bottom of it.
His recommendation. Slow down. Take some time. Relax.
I'm going to try and do this. Been a wild couple weeks in my personal and work life, starting to wonder if it has taken a toll on my physical health. I have good people around me but I seem to forget that I can't do it all, all of the time.
It's nice to get some affirmation from the doc and his practitioner (Theresa). My only complaint is that Theresa always makes me cry. She tells me it will be ok (which I know it will) but somewhere between her hug and her soothing tone, I lose it.
Admittedly, its kinda unfair. Here I was in the waiting room with essentially a winning lottery ticket as far as blood cancer's go and I'm still worrying about me. Even today, I'm sitting next to a girl probably 10 years younger than me, hair free with a chest port. Based on what she was saying, I'm betting she was only diagnosed a few months ago (she didn't know the jargon but I understood what she was saying). It's a pretty unfair world we live in - and she was living proof.
I can't imagine working in that place.
Cancer get's you an immediate wave but sometimes you have to work for it. For example, when I went to get my chest xray today - the woman at the counter was really busy and a little unpleasant...until she read my chart and they it was almost like 'oh shit, this guy has enough on his plate and shouldn't have to deal with my angry ass'. She pretty much pulled a 180 and was delightful for the rest of our time together.
Better get moving. Feeling better already now that my counts are solid.
Wednesday, November 5, 2008
Monday, October 20, 2008
Wednesday, October 15, 2008
Still here.
I know, I know...its been about four weeks since I've posted.
Rather than dwell on the fact that I've been MIA, lets marvel in the fact that I was able to keep it up as long as I had. I mean seriously - I was averaging about 12 posts per month for a pretty long stretch.
All is quiet.
I'm feeling pretty good and have mostly forgotten that I am living with cancer. Certainly I have my moments of fear (and hypochondria), but by and large I am controlling my own destiny and living life.
We had a great vacation about a month ago and we have been going full steam ahead since then. Kristin is in the process of opening a new shop (target of early November) so I've spent most of my weekends building cabinetry for her cash stand, shelving, etc. I enjoy the building - the staining/sealing...not so much. We are going to employ my mom in the next couple weeks to help with painting, assembly and more.
It's great having them in town and it even afforded Kris and I an adult night last week. We had some old neighbors over for a dinner party. It was our turn to host so Kris and I picked up a free-range, grass fed standing rib roast which was just awesome. We purchased it from a local market so we felt good supporting a small business with local meats/produce. I'm all for a global economy, but I like to keep my money in the state if I can.
Kids are doing great and growing like weeds.
Better go. More. Soon.
Rather than dwell on the fact that I've been MIA, lets marvel in the fact that I was able to keep it up as long as I had. I mean seriously - I was averaging about 12 posts per month for a pretty long stretch.
All is quiet.
I'm feeling pretty good and have mostly forgotten that I am living with cancer. Certainly I have my moments of fear (and hypochondria), but by and large I am controlling my own destiny and living life.
We had a great vacation about a month ago and we have been going full steam ahead since then. Kristin is in the process of opening a new shop (target of early November) so I've spent most of my weekends building cabinetry for her cash stand, shelving, etc. I enjoy the building - the staining/sealing...not so much. We are going to employ my mom in the next couple weeks to help with painting, assembly and more.
It's great having them in town and it even afforded Kris and I an adult night last week. We had some old neighbors over for a dinner party. It was our turn to host so Kris and I picked up a free-range, grass fed standing rib roast which was just awesome. We purchased it from a local market so we felt good supporting a small business with local meats/produce. I'm all for a global economy, but I like to keep my money in the state if I can.
Kids are doing great and growing like weeds.
Better go. More. Soon.
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