So it's been a while since I've given an update about my
health. So here it is. I just went to my 16 month check up and the news is...
I'm still PCRU!
Basically, being PCRU is the CML version of being in remission. In CML
terms, it’s called a ‘response’ and not remission because remission can imply
cure, or cancer free. There is currently no cure for CML. However, there is
treatment via a drug therapy and this drug therapy, if it works right, should
allow me to live a long, ‘normal’ life. The goal of
this drug therapy is to gain maximum response which halts disease progression
and puts the disease into a continuous state of very low level chronic stage
CML. To learn more, click here.
So from here, I just keep on keepin' on like normal. I still
have to take Gleevec every day since this is life long treatment, and hope and
pray it continues to work each and every day and my CML doesn't progress, and
do blood work every 4 months to make sure all is still well.
The next milestone is the 2 year mark. Studies show that if
you can be PCRU for two consecutive years, the likelihood of the CML
progressing is dramatically reduced, which is exciting.
I also received more good news from my doctor. Initially
when all this began, I was under the impression that I would have to do a
couple of bone marrow biopsies and aspirations during the initial treatment. For some reason I didn't blog about the first time I had a bone marrow biopsy and aspiration (maybe because I didn't want to relive the experience) but it was the most painful thing I've ever
experienced, ever. I'm not sure what was worse:: a needle the size of my leg (maybe I'm being a little over dramatic but not much) being inserted in the back of my hip all the way to my hip bone and sucking the marrow out (I really almost passed out from the pain of that) or the grinding and grinding and grinding on my hip bone until a piece of my hip bone broke off so it could be sent off to be tested. Mind you I was awake and aware during this entire process. Worst. Pain. Ever. Don't believe me, Youtube it. :) It was hard to walk for a couple of days after that. BUT my doctor informed me that as long as treatment keeps
going well, he doesn't see a need to do a bone marrow biopsy and aspiration anytime soon. High
five!
And even better news, my dosage has been reduced. Initially,
I was taking 400 mg of Gleevec everyday. That is the standard dosage,
regardless of weight/height. Even though
some of the side effects have subsided, not all of them have (such as the nausea,
bone pains, upset stomach, extreme fatigue) and I deal with those things on almost
a daily basis. I have good days and bad days and those bad days are really
emotionally challenging. So because I've been responding well, my doctor
lowered my dosage to 300 mg a day. While I was excited to hear this, I was also
slightly disappointed. I was hoping to go down to 200 mg as many other CML
patients have in the past. My thought
is, since I have to take this everyday for the rest of my life, I want to live
as normal of a life as possible, even though I do have leukemia. And living a
normal life as possible is dealing with as little side effects as possible. I
know I'm not a doctor but I have done a lot of research on my own and I feel
confident in only taking 200 mg a day. So I made the executive decision to do just that.
And turns out, so far it was an okay
choice to make as even after months of taking less than the doctor recommended,
I'm still PCRU. Worst case, if my CML
starts to progress, we will just increase my dosage again.
So yea, that's the status of that. Thanks again for the
continual prayers and support from all of my family and friends!
To read about my entire CML journey, click here.
