Tuesday, March 6, 2018

Disgusted CML Day!

Most days are good; I cruise through them with little thought of chronic mylogenous leukemia.
The past few months, this has not been the case. Starting with the complications from my rotator cuff surgery, due to chronic pleural effusions, and the switch to a new CML medication, Bosulif, to hopefully alleviate my pleural effusions.

I have found Bosulif to have few side effects thus far, with the exception of nausea and vomiting; this has been controlled by pre-medicating with Zofran/Ondansetron. I started this medication while in southern California, visiting family, and was able to fill the prescription of Zofran, with prior authorization, at Walgreen's, with no problem.

I am home now, in Boise, Idaho and it has become a problem. Three days and about six hours on the phone, worth of "problem",  headache, frustration and aggravation, along with fear. It seems that Walgreen's is unable to run the prescription through my insurance, the same way that they did in California; why? I do not know!

They then transferred it to the mail order pharmacy, where I get my VERY expensive leukemia medications from, and they, too cannot "mail" it, and bill it through my insurance.

I have now called the local pharmacy, in the hospital, in high hopes of them being able to bill my insurance, for this medication. I have four more pills, and have been cutting them in half, to hopefully "survive" the next few days.

What I have noticed, since cutting them in half, is that for the first time since starting Bosulif, I now have the infamous diarrhea, to go along with the nausea. Yay!

And another thing that I have noticed, is shortness of breath, going up our stairs; now this could be residual pleural effusion from my Sprycel days, which I pray will be the reason, or it "could" be from the Bosulif; my oncologist says, "No", but the package insert says "Possible".
So needless to say, I am pretty disgusted, and even a bit fearful; what happens if the Bosulif causes pleural effusion, too? UGH!

I guess every now and then, a good dose of reality, really does make you stop and think, that I really and truly, do still have cancer.

This coupled with a few recent CML deaths, and major complications remind me to get out there and enjoy my life!

We are headed to Arizona, to watch the four grands, while Mom and Dad go to Hawaii, on Friday; I plan to soak in, every single moment!


  1. Michele - There have been a couple of case studies where Sprycel patients with pleural effusions continued to have them when switched to Bosulif. It may be because of the inhibition of Src kinases in both drugs. It's being studied currently. This is one of the reasons I didn't want to risk switching, but I may have to in the future and then I'll be back in your boat! Currently, my pulmonologist says I can walk around safely with a small amount of pleural fluid while taking 25 mg (half the 50's I have)of Sprycel. Latest PCR showed the 25 was keeping me at 0.02, which I hope will go back eventually to what I had before (my best) of <0.01. And, btw, from what I hear on the LLS and UK discussion forums, the Bosulif diarrhea typically doesn't kick in for a couple of weeks, then it does, and most (most) goes away after a couple of months. I don't know about the nausea. I sure remember that with Gleevec - taking it with food didn't always work. Nausea, all by itself, is depressing. When I don't feel good, all the stuff like hanging on hold on the phone and insurance hassles loom way too large. Not to mention the fear and worry over "what if I can't take THIS drug either? Then what?" Been there! (Am there.) I hope all this settles down for you and that you have a wonderful time with the grands.

    1. Hi Kat,
      Well, isn't that just special!? lol Won't it just be my luck?? i am going for a chest xray today, so we shall see where I am at; I was off at TKI's for three weeks and then slowly introduced the bosulif. I was on 100mg's of Sprycel, 5 days a week at the end (after six and a half years) and my PCR was around .042, which I was thrilled with. My pulmonologist said the same thing about a "small" effusions, problem was, that normal became about a two liter effusion! And yes, I am in the "What it" this drug doesn't work hiss!
      Thanks for your input; it is much appreciated!

  2. I hope you feel well enough to enjoy the Grandkids... I know mine have a way of brightening my days and busying me enough that I forget the worries for a while.

    1. Lottie, there is no doubt about that! They are my light!!


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