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.
Tuesday, February 24, 2009
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
Subscribe to:
Posts (Atom)
