Tuesday, March 15, 2016

Sprycel Dosing: On and Off Days

Since many have asked, I thought it prudent to explain my treatment for chronic mylogenous leukemia.

I was diagnosed with CML on Feb. 9th, 2011, a little over five years ago. After much research and doctor shopping, I selected an oncologist that not only is a CML specialist, but connected in the realm of CML research, as well. For me, I wanted some one at the top of the CML food chain, as I knew that I would have CML, for the rest of my life, and I plan on being around a very long time; I still travel from Boise, Idaho to Los Angeles, Ca. to see him.

That being said, my Sprycel journey has been an up and down journey, full of peaks and valleys. The manner in which my treatment is established correlates directly to my PCR results and the common Sprycel side effect; pleural effusion. During the past three years, my PCR has ranged from .0000% to .432% and I have had periods of pleural effusion, along with several bouts of double pleural effusion.

A common question that often arises is, "Since you suffer from pleural effusion, why not just change TKI's?" I have often had this very same discussion with my oncologist, and my reasons are quite simple, to me, although maybe not very logical to others. I prefer to take a TKI that does not have a Black Box Warning, and there "seem" to be so many people that suffer greatly, on Gleevec, that I am reluctant to take that risk, until I am left with no other choice.

As far as the newer TKI's are concern, my oncologist prefers to monitor their use, for a while longer, before leaping to one of them.

This being said, we are constantly adjusting my medication regimen to avoid pleural effusion, have an acceptable PCR, and as few other side effects as possible,in order to give me the best quality of life that we can.

This results in different doses of Sprycel, in varying frequency, throughout the week. My best PCR results seem to be when I take 140 mg, six days a week, however, I always develop PE after about six months. At that point, I take a few days off, the PE resolves and I resume my treatment.

Currently I am taking 140 mg, five days a week; down from six days per week for the past six months. My PCR will be tested next month to see the result of this schedule.

My oncologist truly believes that my body needs the break of one or two days a week, to allow it to recover and rejuvenate from these potent drugs. He feels that this is the best choice for me, although others believe that you should never skip a day; he believes that not taking this break may lead to toxcicity, in my body. Thus far, for the past five years, my PCR has not risen above .432, which he feels is an acceptable PCR. My latest PCR was .06, after six months on 140 mg, six days per week.

Unfortuantely, the PE always creeps in at this dose, and a reduction in days, always follows. I am always disappointed when this happens and I keep hoping that some day, my body will adjust to this dose, and allow me to remain on it, as I have my best results during this period.

I hope that that answers any of the questions that you may have, on the "why" I have "No Sprycel" days on my calendar, and assures you that these days are at the recommendation of my oncologist; please do not make any changes to your treatment based on any thing that I say, but please feel free to discuss my situation, and treatment,  with your own oncologist; if you wish.

I implore every single person that lives with CML to find the best possible CML Specialist that you can; one that will answer all of your questions, spend time discussing your frustrations and fears, and be willing to discuss your treatment, to find figure out what is best for YOU! Not just follow protocol "because", but to treat your CML, specific to you.



Friday, March 11, 2016

Side Effects SUCK!

Apparently I had been living in Wonderland just a tad too long; life was becoming more "normal" than it had been, since my chronic mylogenous leukemia daignosis, five years ago. There were more days days that I did not think about CML, than days that I did, and more days that I felt relatively "well". My side effects were minimal, and through the years I have learned to cope with, and accept, my new normal.

I suppose that the universe must have heard me marvel at how awesome everything was  going, here in Wonderland, and decided that it was time to yank me back to reality! This yank began with what I thought was a throwback, to my old back antics. I reached for something and my hips shifted to the left, and my shoulders shifted to the right; this knocked me right out of commission; total bummer.

That episode lasted approximately ten days, but during that time, I realized that many other debilitating side effects decided to join the party. I currently have that all over achy feeling, muscle and joint pain, headaches and that terrible neuropathy in my CML Hands, which  keeps me up, all night long; a harsh reminder that I still have cancer.

What I also realized was that I had started a new bottle of Sprycel. I grabbbed the old one and just as I had suspected, it was a different Lot number than the previous five bottles. I then went to the calendar where I record my Lot Numbers and side effects and marvel at the fact that I have not had one pain entry in five months!

I really ahd been living in Wonderland! I had found a golden supply of Sprycel; one that worked for me. Acceptable PCR and acceptable amount of side effects. Sad truth however, I knew that eventually the party would end; I just never realized how abruptly it could happen.

Just when you think you are in control, you are reminded that you are not. You are at the mercy of so many different aspects of the medical profession; oncologists, pharmacists, researchers and drug manufacturers. Because I have a chronic cancer of the blood, I either choose to treat the cancer, or not.

Because I love life, and all of the people in my life, I choose to keep on- keeping on, praying that someday there will be an actual cure. A friend recently posted a most perfect saying: "When I am resting because my body is weak, I need to remember that I am not wasting the day. I am doing exactly what I need to do; I am recovering."

While this is not an easy thing to accept, it is my reality, and I must accept that.

On the up side; I started a new bottle of Sprycel, with a new Lot Number, last night. I am praying for these side effects to lessen, so that I am able to rejoin the living.

If the odds are in my favor, and it is a great bottle of Sprycel, you can bet that I will not waste a single moment, of my days in Wonderland!

Bricks for the Brave!!