18 Month Checkup

I had my 18 month checkup today and my numbers still look great! My white blood cell count was at 4,900 which is within normal range and the exact same as my last checkup three months ago. All of my other counts were normal as well. The only thing that has changed is that I’ve gained 4 pounds. Damn holidays!

They gave me my next three months worth of pills today too. I’m lugging them around in my backpack because my car is in the shop and I’m on foot. All of a sudden I realized that I have $12,000 worth of medication in my bag. It’s insane. I can’t believe I’m swallowing roughly $150/day. I’m really lucky that I was able to get on this study, even if they want to punch a hole in my lower back every 6 months. Speaking of which, my next bone marrow biopsy is in early February so I have that to look forward to just in time for my birthday.

Results From My Novartis Study!

I’ve been on a study with Novartis for the past year and a half, receiving 300 mg twice daily of Tasigna (Nilotnib). Tasigna is already approved in many countries (including the US) as a treatment for CML patients who have become resistant to Gleevec (Imatinib) but not for newly diagnosed patients. The purpose of the study is to show positive results for the newly diagnosed so that it can be approved for this segment of patients as well.

A couple of weeks ago Novartis released their 12-month results which showed that Tasigna is superior to Gleevec! I’ve had wonderful results (both major molecular response and complete cytogenic response) and had very few side effects, which seems to have been the experience of most of the people on the study. Hopefully it is approved before the end of the 5-year study so that I don’t have to switch over to Gleevec afterwards.

This article on Medical News Today reports:

One of the key effectiveness measures used in the study was called major molecular response (MMR). This is defined as the reduction in levels of the Bcr-Abl protein to less than or equal to 0.1% of the level seen before treatment. MMR is an important measure in CML, as data show that patients who achieve MMR are unlikely to progress to the later stages of the disease.(6) With nilotinib 300mg twice-daily, the rate of MMR at 12 months was twice that of patients receiving imatinib 400mg once-daily (44% vs. 22%, p < 0.0001).(1)

Another effectiveness measure used in the study was called complete cytogenetic response (CCyR). CCyR indicates that no CML cells containing the Ph chromosome can be seen in a sample of bone marrow taken from the patient. 80% of patients achieved CCyR with nilotinib versus 65% with imatinib 400mg once-daily (p < 0.0001).(1) Responses were achieved faster in the nilotinib group than in the imatinib group.(1)

9-Month Checkup

Last week I had my 9-month checkup. Its hard to believe that it’s almost been a year since I was diagnosed! The whole experience still seems so new and unsettling. One day I was lurking around on the  Leukemia and Lymphoma Society discussion boards and someone asked the question, “When will the fact that I have leukemia stop being the first thing I think of when I wake up and the last thing I think of before I go to sleep?” I can definitely identify with that, but it is getting a lot better as time goes on.

Anyways, good news! All of my blood levels are still completely within normal range. As I’ve noted before, the Tasigna is hard on my liver. My ALT levels are just a smidgen out of normal range, but considering that at one point they were three times as high, I’m ecstatic.

Nice work little chemical nano-bots!

Variables

One of the hardest things I’ve had to deal with since being diagnosed with CML is making peace with the unknown. I think my struggle is illustrated fairly well by the fact that I’ve felt suicidal a few times since July. The idea never lasted long and I was always able to push it away quickly upon realizing the irony of the sistuation: I’m afraid of dying, so I’m going to kill myself. How absurd. I know that plenty of people with chronic ailments “off” themselves, but usually it’s because they are in physical pain. I’m not in physical pain, so what is this all about? I’m guessing it’s about control. It’s about knowing (or falsely believing that you know) your future. The following are a few of the major question marks bouncing around in my skull.

#1 – How will I live my life

This one is the easiest because it is the only one in which I feel I have any control. However, I’ve been surprised at just how hard it has been to decide what I value most. I mean, don’t we think about this on a daily basis? Aren’t we constantly searching to understand what will make us happy? Yes, I think we are. But sitting down and saying, “If I have 2 years left, what do I want? If I have 5 years left, what do I want? If I have 10 years left, what do I want?” is much more difficult. Yet it has been the only way, I’ve found, to really prioritize. And still, I struggle daily to determine what I value and to what degree.

#2 – Will the rest of my life be painless

This is one of the things that disturbed me most about Dawn’s blog (as mentioned in my first post). She had become resistant to leukemia meds and had to receive a bone marrow transplant. She died soon after that. Bone marrow transplants are always dangerous to survival and only become more dangerous as you get older. The age of 32 is considered old by transplant standards. The pictures in Dawn’s blog show  a happy lively girl transform into an unrecognizable version of herself, sick and zombie-like. It seems ridiculous to me now, but I never actually considered that this could happen to me.

#3 – How long will I live

The medications that are currently used for CML are being touted as huge medical “miracles”. Gleevec is only about 6 years old and my med, Tasigna, is about 1 year old. Before these meds were on the market, a CML patient could expect to live roughly 5 years. With these medications a CML patient can expect to live…. nobody knows. This, of course, is the one question that I badgered my oncologist about most. Her answers were always vague, “we hope that you will live a long life” or “you will probably live much longer than you would have  before these medications were invented”. At first, this vagueness allowed me to believe that I would live to be an old eccentric woman with a house full of rabbits. When I happened upon Dawn’s blog, I realized that this is probably not the case. And that “much longer” is still undefined. For now, I am a guinea pig. I take some comfort in knowing that my experience will help future patients have some closure on this issue.

#4 – What is waiting for me on the other side

I’m not going to talk much about this one, for two reasons. One, I think this is a question that people deal with their whole lives, sick or healthy. Two, I’d like to go into more detail about my thoughts on this issue in a future post. I will say that having a chronic illness has given my brain permission to visit this question quite a bit more than I ever have before. I suppose there are the religious types who believe that they know, without a doubt what is on the other side and that it is a wonderful, utopian place. Unfortunately (and fortunately), I am not one of those people.

Introductions

I guess to start I should introduce myself. My name is Carmen. I’m 32 and have a long list of hobbies that include: animal documentaries, finding new music, cuddling my pet bunnies (or attempting to), hiking, camping, biking, reading science magazines, rollerskating, watching roller derby, traveling and hanging with my wonderful friends. I also have CML (Chronic Myelogenous Leukemia).

I was diagnosed in early July, 2008. I ended up in the ER with a (still) mysterious and unrelated stomach ache and was told that my white blood cell count was at around 65K when normal is somewhere in the neighborhood of 5K-10K. From there I was admitted to the hospital and the rest is history. The stomach ache was a godsend, since CML has little to no symptoms in the chronic (first) stage. Many people are diagnosed when they have moved onto the accelerated or blast phases, which makes treatment much more difficult.

My chromosomes 9 and 22 got stuck to each other like a couple of prepubescent kids making-out while wearing braces

For the first 4-5 months after my diagnoses I was doing a real bang-up job of living in denial. I recently stumbled upon a blog belonging to a girl named Dawn. She was my age and diagnosed with CML just a few months before me. She died last month. Needless to say, it rocked me pretty hard and.. well.. normal will never be the same. So after weighing the different options I had for keeping my sanity (therapy, support groups, drinking myself delirious, jumping into an active volcano), I decided that writing a blog of my own would probably be the best way to organize my thoughts, document my journey and ooze my bad emotional mojo onto others instead of holding it inside. Lucky you.

I thought today would be the perfect day to start considering that I have something to celebrate! A few weeks ago I had my 6 month follow-up, which included a bone marrow biopsy (if you haven’t tried it, I highly recommend one.. haha!). My oncologist called me tonight and explained that my results after 6 months were where they hope to have them by 1 year. The PCR test (scroll about halfway down) checks to see how many cells contain the chromosomal abnormality called the Philadelphia chromosome, which is responsible for the excess number of white blood cells found in a person with CML (or at least that is how I understand it). My test showed zero. She explained that there is another test that is still being processed that will give a more exact result, since a CML patient will always have a few retarded cells bumping around. But the gist of the matter is that almost all of my white blood cells are healthy, active little dudes. I never knew I could love the absence of something so much!

So apparently those chemical nanobots that I swallow twice a day are doing their job. Good job, little cancer ninjas! I’m on a study drug called Tasigna (Nilotinib).  Tasigna is already approved as a second line of defense, to be used when a person becomes resistant to the usual first-defense drug (Gleevec). The study allows me to skip Gleevec. The hope is to find a drug that the body won’t become resistant to, resulting in remission as long as you take the pill. My side-effects thus far have been hair loss (which almost drove me mad, but has since subsided), a rash on my arms and legs and minor liver damage (sadly I’ve had to say “good day, sir” to alcohol). Still, I feel quite lucky when I read about some of the folks on Gleevec who have had pretty severe fatigue and bone/joint pain. Aside from timing pills and using a blog to relax instead of a glass of wine, I feel pretty normal.

I don’t plan on being this long-winded every time. And I certainly do not plan on talking CML every post. I’m hoping that this blog will grant me fun and expression as much as it documents my battle with leukemia. With that said, I would like you to meet my favorite internet phenomenon, Oolong. Oolong is no longer with us. I doubt he died from something as boring as cancer. He probably died of cuteness. Which is really the way we all want to go. I’m sure he’s guarding the pearly gates with a cloudcake balanced upon his head.