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.

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.

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).

Visit msnbc.com for Breaking News, World News, and News about the Economy

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.

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!

Needed, Neutrophils.

My counts have actually been pretty good for a leukemia patient, but sadly I've been down since last Friday. I tried to use the weekend to recover but it looks like whatever I've got has reared its ugly head again.

I am home from work this afternoon so I can rest up. I feel like I have enough fighter cells (neutrophils) to keep any illness from really taking me out, but not enough to finish it off so things tend to hang on a long time.

I am going to the oncologist on Thursday just to make sure there's nothing else going on that we're missing. It's probably nothing more than a virus but I've learned to expect the unexpected and not ignore my body.

Hemo Update.

Still on Gleevec holiday and my counts remain pretty solid.

Whites - 3,400 (stable)
ANC - 1,700 (stable)
Hemoglobin - 13.9 (stable)
Hematacrit - ? (forgot to ask)
Platelets - 159,000 (relatively stable)

Since these results were processed by a different lab (and immediately), I am curious if the results are directly related. I know that platelet readings can vary based on how long the samples sit.

Oh yeah, my liver. So my bilirubin at its high point 2 weeks ago was 4.9, last Monday it was 4.6 and on Monday it was 3.9. In short - its heading the right direction. It sounds like they'll keep me off the meds for another 2 weeks. They expect my PCR-ABL test to be back by then and we can talk about continued therapy.

I'll take it.

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.

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.

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.

retrospective.

I felt pretty darn good this week, though I still have to take that little brown reminder every night. I thought I'd share with you the email I sent to my office that kinda broke the story on my diagnosis. I only do this because I've been reading articles, blogs, etc lately that addresses the topic of keeping the disease to yourself or shouting it to the masses (I chose the latter).

Without further adieu.

First and foremost, I want to thank all of you for the emails, prayers, chi, vibes and such.

It's been a rough week for my family and sometimes its hard to really fathom the permanence of it all.

I'm going to apologize in advance if I rehash too much of what Paul already shared with you - but I thought it might be helpful to help clear some things up.

The truth of the matter is, I have Leukemia - which is a form of cancer in my blood. Unlike like a lot of cancers, I do not technically have tumors. The devices in my body that create white blood cells unfortunately have mutated, so now many of my white blood cells are the 'bad guys'. The problem is, the bad guys are a little stronger than the good ones and were taking over my body. To put things in perspective - a normal white blood count is 5,000 to 10,000...mine was 185,000 when I arrived at the emergency room on Thursday night.

Here's the good news, my count is already down to 85,000. Some other good news is that I have the Chronic Myelogenous form of Leukemia. Sure, I still have cancer (which sucks) but mine can be treatable by what is called a miracle drug (Gleevec). Unlike true Chemo, the drug I take is targeted and only goes after the 'bad guy' white cells that have the Philadelphia Chromosome (I guess that's where it was identified). Its too early to tell how I will respond to this, but most people tolerate it very well. Some other good news is that there are two more drugs that do similar things should I no longer respond to the Gleevec.

As these white cells are killed off, I will be really immunosuppressed and need to keep my distance from all you germ farms. After some time, my body should rebuild with good cells and hopefully get me to a remissive state. My goal is to get back to work by mid next week in a reduced role and slowly build up. I'm going to warn you in advance that I'm going to in and out a lot since I have to give blood twice a week and will have doctor appointments pretty regularly. Additionally, mornings are pretty rough on me as my body flushes out all the dead or dying cells. Please be patient and find somebody else to lift all the heavy stuff. Also don't point or stare since my arms will probably look like a heroin addict with the sticks I got over the past week.

Without getting too morbid - I'm going to answer the question nobody wants to ask. As long as the drugs are controlling the 'bad guys', I'm golden. Every year Gleevec has been on the market (its only been out for about 6 years) the median life expectancy has grown. The second and third tier drugs are just as promising, if not more so. Lastly, since I am so young - I am still a candidate for a bone marrow transplant which is actually the only way to cure the disease but about 3 in 10 die from complications and I'm not liking those odds unless the drugs stop working.

The good news for all of you is that Leukemia typically affects about 1 in 100,000 in the 30 - 40 age group so I've pretty much saved all your lives, again. Also, apparently cutting back on the McDonald's wasn't my secret to weight loss after all. ;-)

Hope to see you guys next week.

- ak

Update.

Been under the weather the past couple days but my blood counts are pretty solid.

Whities: 3,700 (down 200 from last month)
Platelets: 180,000 (up 30,000)
Hemaglobin: 13.7 (down a fraction)
Hematocrit: 37.2 (down a fraction)
ANC: 2,400 (that's a lot of good fighters).

More this weekend, need to get some rest.

oh snap.

I must be getting lazy...another 7 days between posts.

Here's the quick update. My mom and dad are now moved into their new home on the NE side of Indy. It's great to have them so close and we were able to have dinner with them last night at Shapiro's Deli. They came by tonight to pick up their most prized possession, Macy. Macy has been a regular house guest for the past three weeks but it was becoming painfully obvious that she missed her mom, dad and queen sized bed.

Maris has a little bug today (probably too much corned beef). Fortunately - it seems to spared Kristin, Eli and myself of its wrath. Hopefully she'll get a good night's sleep and fee better in the morning.

We had a hell of a storm this past weekend. More than 35,000 lightning strikes were recorded in the Indianapolis area. We had very little wind to speak of, but lots and lots of rain. As a matter of fact, we collected more than 50 gallons of water in our rain barrel on it's maiden voyage. As a precaution, we spent most of Friday night in the basement.

I have my monthly blood draw this week...just a CBC I think. Next month I have my big test (PCR) as well as a more thorough blood work-up. The less I go in, the less I think about my cancer and have been feeling a lot better this week.

I been thinking that I seldom share pictures of the kiddos in my blog...so here you go. Until next time...


Maris cheesin'


Eli in the pool.

This just in...

Whities - 3,900
ANC - 2,000
Platelets - 150,000
Hematacrit - 42.7
Hgb - 15
RBC - 4.8 (million)

In short, this is great news. These counts are low for normal folk, but up a bit for my new normal. I won't go back for another CBC (complete blood count) until June and a couple weeks after that I'll get my PCR-ABL protein test where they do a blood smear and try to quantify how many Leukemic cells are in my system. A couple weeks ago I checked in with Dr. Dugan and he had a pretty awesome quote about cancer. What he said was:

"In cancer care, we know we can beat the cancer - we just have to wait until science catches up"

I thought it was a pretty decent way to describe it. Needless to say, I am fortunate in that much of science has already caught up with my form of Leukemia.

Back in the real world, Kristin's brother Tom just left after a weekend visit. It was a pleasant trip and nice because Tom is just about as nerdy as I am. We were able to play video games, talk shop and just enjoy the city. The weather was solid so we were able to take a couple cruises in Edith too.

Speaking of poor Edith - looks like she's going to need a little more love this week. I was able to get the exhaust installed last week but now I'm seeing a leak in what I think is the heater core. I'm going to get that repaired this week and probably have the water pump done at the same time since the radiator will be empty for the core repair.

Kris and I voted today and I'm hopeful that Obama will get a win in Indiana. In reality, I'm expecting a 8 point loss based on the state's demographic and a lot of Clinton pandering to rural voters. We will see.

Kris and I will have an primary party tonight after the kids are in bed with some wings, nachos and beverages.

GObama 08.

I feel no love.

Apparently Dr. Dugan (my oncologist) doesn't like me anymore. I had my appointment this morning and he said, I'll see you in 3 months. 3 months! How can that be - I need, at the very least, a monthly dose of the good doc. Someone to tell me that I'm great, never looked better. To make matter's worse, he told me he's going to cut my blood visits to monthly (from every other week). Monthly! I crave the data. I need to know that my Lymphocytes are still making up 39% of of my white blood cells.

I told him that its my money and if I want to pay him $100 to talk about how sick I am for 15 minutes, that's my prerogative. It's a sad day, I guess I'm getting healthier which means no more sympathy.

I do go back in about 10 weeks for my first molecular test. I hope to get some mileage out of that, though it's done through a peripheral blood draw so nothing exciting about that. It takes a good 10 days to get results on it so I'll get it done a couple weeks before my next appointment in July. July!

I did get blood work yesterday just to make sure he had what he needed before my appointment today. Here's the data:

Whities - 3,300
ANC - 1,800
Platelets - 124,000
Hematocrit - 40.2 (for those keeping track, normal levels for a man)
Hemaglobin - 13.8 (right on the lower edge of normal)
Red Blood Count - 4.47 (just shy of normal)

In short, blood looks good and my numbers may not stray much from this as long as the Gleevec continues to work. After the molecular test which is called an RT-PCR (you can read about it here), we'll get a baseline of how the progression of the disease has been going. The goal is to get the resulting number to go down on each subsequent test (the test will probably occur every 3 - 6 months).

Aside from all this medical stuff...my impala will be delivered this Friday if the weather stays dry. I am totally amped and hope to be out driving next weekend assuming we can get insurance, plates, title all squared away.



Holla!

Down.

As promised.

Whities 3,200
ANC 1,800
Platelets 114,000
Hemaglobin 13.1
Hematacrit 37.8

Generally speaking my numbers are down from two weeks ago, though not significantly. I think my whites dropped about 10% and my ANC around 20%. Since the ANC number is more important as a ratio of fighters in my whites, I'm not overly concerned. I don't meet with Dr. Dugan until next week, but I'm guessing they will have me stay the course for and keep up the current regiment. I meant to share this a couple weeks ago, but here is a great little blurb about my Oncolgist.

I'm torn whether a drop is good news or bad. The good news is my meds are working really well and keeping the Leukemia in check, the bad news is my numbers are a little low which can make it a little easier to get sick. The fact of the matter is, I'm happy that I likely won't need to take any additional Gleevec in the short term and that I'll probably just hang around the low dosage for quite some time.

I have good days and bad, but I generally feel solid most of the time. As the weather has warmed, I've been getting outside more and taking care of the house. Doing this really helps get me to a calm place. The only lingering side effect is really broken sleep which in turn makes working through the day a little tougher.

There aren't really too many changes around the house. The showings have slowed down a bit...which is actually fine since the house has been a wreck lately. We took a second look at a house with some nice property but decided that it was just on too busy a street with two littles ones and two furry ones. The hunt continues, though I think Kris and I would be fine staying downtown if we could get the school situation under control. I'm not inclined to lower the price of our home too much and if we don't get much activity in the next couple months, I'm thinking we won't renew our listing until next year. I'm probably making it sound dire, because we've actually had about five showings in the first month so I'm not complaining about the traffic.

Aside from that, my Mom and Dad are heading down this weekend for a visit and it's only a month or so away from Mike's wedding.

10-4. Aaron Out.