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.



5 comments:

  1. Thanks for sharing your experiences, Michele.

    I was dx one month before you... Jan 2011. Fortunately, 100mg of Sprycel daily got me to PRC .0000% in about a year. The last two years, I've been slowly decreasing dosage. I'm at 50mg/day now. I tried skipping Saturdays as an experiment, and got a blip on the PCR, although tiny. I'm trying it again now. We'll see.

    I really want to see how low I can get down to... let's keep sharing info!!

    Steve

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    1. Steve, that is so awesome! I have PCR envy!

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  2. Would you be willing to give me your specialist name my daughter is 10 and has been on sprycel since she was 7and I always wonder if her treatment is best for her due to ankle and joint pain she usually misses a day a week in school due to side affects headaches joint aches her onocolgist does not specialize in cml would love to talk to a specialist you can post it or my # is 509 230 6032

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    1. Cheryl, I am so sorry....I just saw this; send me an email at Meeeesh51@gmail.com and I can give you the names of several other mother's whose kids have CML. My oncologist is in southern Ca at Cedar Sinai 1-800-233-2771

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  3. Would you be willing to give me your specialist name my daughter is 10 and has been on sprycel since she was 7and I always wonder if her treatment is best for her due to ankle and joint pain she usually misses a day a week in school due to side affects headaches joint aches her onocolgist does not specialize in cml would love to talk to a specialist you can post it or my # is 509 230 6032

    ReplyDelete

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