Still alive!

I'll keep this short...

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).

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.

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.

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.

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?

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.

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.

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.

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.

The Data.

I don't have it.

I got the results of my PCR-ABL test yesterday. In short - everything sounds good. However, because I got them over the phone and from the NP (nurse practicioner) I really didn't get much feedback other than "the levels are very low". What levels she was referring to is anyone's guess. I asked that she send over a copy of the results so at least I can see the whole picture. My guess is the "very low' levels are probably the number of active Philadelphia Chromosomes (the 9/22 translocation that triggers the abnormally high white count growth). I had been off my Gleevec at the time so that my explain why there were any at all.

I am waiting for a call back to find out if I should still go in monthly for bilirubin checks and it doesn't sound like I'll be getting a complete blood counts for six months (at my next appointment). I think I'm OK with this since my counts have been pretty stable for quite some time hovering in the low to low normal range for pretty much all categories.

Been a pretty busy week around our house. We are currently in the process of moving Kristin's office back upstairs and have been building furniture, decorating the room and getting the technology all figured out. I expect that we'll get it all wrapped up in the next week and start the process of purging the basement for our next project.

Just 10 more days until our vacation!

It's just not working out...

How do you break up with a doctor? I need to know by tomorrow because I cheated on mine today and I'm guessing my blood results are going to show that I met with Dr. Cripe today. For those of you coming in late to this dialogue I had set up an appointment with a Leukemia specialist a couple weeks back, and - today I met with him.

The practice was busy, active but surprisingly much more organized. I was whisked away almost immediately after sitting down. This new place has a lab on site and the first thing they do when you arrive is take a CBC. Pretty sweet gig if you ask me - one stop shopping. They did the normal stuff - height, weight, bp, pulse, etc and sent me to an exam room. Next up was about 20 minutes with a med student - its a good primer for meeting with the doc and really gets your mind thinking about all the questions you want to ask.

I did clam up a bit when the doc arrived. He was a little intimidating, but mostly in that teachery sorta way. He explained things very clearly and even left a sheet of notes behind for me. On my way out they decided to take another couple blood samples and even did the test Dr. Dugan sorta did but this time with numbers (not a pass/fail like last time). I should hear back in a couple weeks and we'll probably revisit my bilirubin levels as well.

All in all, a good visit at a good practice with people who seemingly really know their stuff.

Now I need to call Doc Dugan's office tomorrow and let them know that it's just not working out.

I hate liver.

So my docs think I have something called Gilbert's Syndrome - it essentially is a just an elevated bilirubin level coming from my liver. I've probably had it my entire life - and its pretty benign, you can read about it here if you're so inclined. Most people have a bilirubin level of 0-1, mine happens to normally be around 2.4.

The problem is, lately mine has been just shy of 4.9...which is a big deal. So, I am officially on a Gleevec holiday for at least a week or two. They want to see the levels drop back down to 1.5x my normal level (somewhere in the 2 - 3 range). If the Gleevec holiday achieves this - they will lower my dosage to 300mg daily from 400mg.

Honestly, I'm a little relieved. I've long felt that my body is really sensitive to meds (I'm one of those people that can take a single tylenol and feel better) and am hopeful that going to 300mg will make me less immunosupressed and keep my white levels closer to normal.

Needless to say, we don't want my body to build up a resistance to the drug so going on and off the Gleevec frequently is something we want to try and avoid. That being said, we also want to avoid destroying my liver so in this case it is warranted. Going off the Gleevec for a couple weeks shouldn't affect my white counts too much since women have been known to be off it for months while carrying babies.

I'll keep you guys posted.

lifted.

here's the short story...

I'm dropping off Eli at his new daycare. I put my laptop case (which of course today has my wallet in the front flap) on the floor board, tucked under the seat and take Eli inside. I come back out 10 - 11 minutes later and there is a pile of glass near my passenger windows and of course a missing laptop case (and wallet).

The clean up is a longer story than its worth telling and most everything is fixed at this point including the window, new credit cards, restored computer files, etc.

It's a hassle more than anything - and frankly, I know better having lived downtown for years. Still, I am pretty angry that crap like this can occur just 100 steps from a child care facility on a sunny Thursday morning at around 8 am. Perhaps my biggest frustration is the fact that the computer was locked down and didn't have a power adapter in the bag so chances are it was just tossed after they realized it was useless to them. On top of this - my wallet only contained $12 in cash and when they tried to use my ATM card, the machine took it from them.

I hold very little hope of recourse (other than divine of course).

Anyway - had a good weekend in spite of the drama on Thursday. I cut some more beds in the backyard, spread another couple yards of mulch and got some good time in with the kiddos. I've been feeling good aside from the inability to get any answers regarding my elevated liver levels from my docs.

I'm likely heading to the new IU cancer hospital today to separate some rocks for a sculpture project my company is working. The grand opening is this week so we only have a few more days to get the light rocks and the dark rocks arranged in the grid (this includes about 40,000 lbs of washed river rocks).

Holla.

the deed is done.

I think most decisions are better made when you're still stewing...

So, I made an appointment with a new Oncologist. Dr. Larry Cripe is the Leukemia guy to see at IU Med Center so hopefully I've got a winner...given that I learned my last guy is more of a prostate guru.

To be fair to Dr. Dugan (my current Oncologist) - I was just thrown at him from the emergency room. I certainly didn't have much of a choice as they were sticking a needle in my hip bone and at the point I was probably in a bit of shock (both literally and figuratively). I'm sure he was on call that night and got stuck with me - an overly researched, slightly hypochondriacal patient that routinely assumes he's on his death bed (I'm being dramatic).

Dr. Cripe studied at Rush Med center in Chicago and Duke. More details about him are available here. I think he'll be right up my alley. A big bonus is that IU is part of the Clarian/Methodist network so all my counts, tests, etc are available to them right away. A 2nd bonus is that IU is completing their new cancer center that I have visited a couple times...and it seems to be the Taj Mahal of hospitals, you can check out further details here.

Anyway, I hope I like this new guy and I hope that he's the real deal. I'm not sure how you break up with a doctor, but at the end of the day - nobody cares more about me...than me.

well...

I got my stuff back from Dr. Dugan today. Actually - I only saw Dr. Dugan for about 45 seconds, but his practicioner pulled all my numbers for me.

In short - I'm not sure what is going on. I'm considered to be in Hematologic remission, but the results of my PCR-ABL test don't really tell me anything. It essentially says that I am positive for the chromosome 9-22 transversal (which I already knew), and negative for PML 15-17 chromosome fusion. I guess its good that I don't have any other chromosomes flipping around, but I was expecting some sort of number.

Dr. Dugan said that the numbers become important in the next three months then again at a year. My concern is I think I got the wrong test so in three months they're going to realize that we should have gotten a different one. I also learned the Dr. Dugan is actually a prostate specialist and Dr. Bhatia is their hemo guru. I'm tempted to get a 2nd opinion at this point - I feel like I'm the one doing all the leg work/research and most of the time I don't even get my questions answered.

To top things off, my Bilirubin levels are really elevated. I have been told for years that they're higher than normal, but they seemed really high (and rising) during this last test. I'm supposed to get a call from Novartis in the next day or two to talk with them about this and the glaucoma as potential side effects. For $3,000 per month, I would expect to be less of a guniea pig.

I'm probably coming across as angry - which I'm not. Just frustrated that I seem to be the only one who even reads my blood counts and data.

Grrrrrr...

hemo update.

Apparently the Gleevec is still working (maybe a little too well).

Whities - 3,300 (down from 3,400, this is a little low but ok for Leukemia folks)
ANC - 1,600 (down from 1,700, but still in the low normal range)
Platelets - 158,000 (up 8,000 and in the normal range)
Hemoglobin - 13.1 (down from 13.2)
Hematocrit - 37.9 (up from 37.3)

So, even though I'd love to have a few higher counts, I'm ok with this. Only a small drop in fighters and total whites.

I took Eli to Dr. Yancy this morning for a quick physical before he starts his new school tomorrow. He went with me to my blood draw first and I think he felt like he dodged a bullet when we got up and left after only I had my blood done. Little did he know that he was going to get a tetanus and polio shot in his legs 30 minutes later. The appointment was fine and aside from a little eczema, he's a healthy boy. I think he was 48 pounds, 42 inches and all boy.

Kris looks like she has strep throat and sadly Maris may have picked up a touch of it as well. On top of this, Mar and Eli often share a water bottle - it may make the rounds in our house before the weekend is over.

I know what you're thinking...

What kinda of parent allows their four-year-old to run around the yard with a lit incendiary device...



ANSWER: the same kind that allows their two-year-old to do it.

Had a nice 4th weekend. I felt pretty good almost the entire weekend and got a lot of family time in.

An impromptu party erupted in our yard about an hour before the municipal fireworks show. Two additional downtown families and their children showed up and mayhem ensued. I put up our tent in the front yard and all the kids piled in for the show (bribed with popcorn) I'm guessing no less than six fireflies gave their life that night as the kids tried to capture them in the 'bug corral'.

Just one more week until I get my blood work back. I'm anxious, but in a good way...I kinda have a good feeling about it (don't ask me why). It's my first one so the results are just what they are. During the subsequent tests we will hope for something called Log reductions (a logarithmic count of the Leukemic cells).

On the home front, I am currently working on a yard project and Kristin is in the midst of revamping her office. Stay tuned!

S N A F U

Ok, that's probably being a little dramatic.

Just a quick update. I got back the results of my cardiac ultrasound...normal, unremarkable.

Unremarkable! I am completely remarkable. What do I have left if I can't complain about Leukemia or heart ailments? At least now I can lean on the glaucoma until something else breaks ;-).

Kris and I took the kids to the park last night with hopes of wearing them out. It didn't work. Eli was still up at 9:30 and Maris tested out her vocal chords for at least 30 minutes before succumbing to exhaustion. I know kids aren't like dogs and they can access memories, but fortunately for us - Eli and Maris seem to forget how angry they were the night before and start each day with a smile (and raisin toast).

hemo update.

Whities - 3,400 (down a bit)
ANC - 1,700 (down a chunk but still decent, normal is above 1,500)
Platelets - 150,000 (down a chunk, but still right on the edge of normal)
Hematocrit - 37.3 (up a tick)
Hemoglobin - 13.2 (down a tick)

In short, pretty decent news. You can look at it a couple of ways, but my feeling is that my counts are pretty good in spite of the medicine and at the very least - my numbers are still under Gleevec's control. The worry would be if my counts really started climbing because then we'd have to revisit the Gleevec dosage or look to other meds.

I've been under the weather a bit so I'm thinking that probably affects my ANC/White numbers. For those of you new to this - the ANC is actually a derivative of the percentage of fighters in your white blood cells. In my case - exactly 50% of my white blood cells are fighters. No too shabby.

walk in these shoes.

It's no secret that my health is not the best...and frankly, it's never been all that great. I was blessed with Leukemia, an broken gall bladder (I kicked that fool to the curb a few years ago) and a host of other gastro issues.

Sometimes I'll be driving and see a 60 year-old guy in a convertible and wonder - how is that guy feeling? Is he really as happy and healthy as he seems with his gray mane flowing in the wind. If I could, would I want to switch my body with him. I, of course, try to straddle the line of being positive but still wondering in the back of my mind...Did I get the short end of the stick in the health gene pool?

Don't get me wrong - I wouldn't trade my life for anybody else's. I've got two great kids, a fantastic wife and wonderful family near and far. My dog is loyal and my life is just about perfect in everyway (with one notable omission).

Still, I admit that I'd be lying if I wasn't a little jealous of people who can go an entire year without getting sick, tired, weak and otherwise health compromised. Jerks.

I just got back from the lab where they took another five vials of blood. Today they're checking my Bilirubin, my complete Metabolic profile, a CBC and a couple others. I should hear back on most of them this week but will probably wait until my July 9 appointment with the good doc for the full breakdown.