|Missing the pre-teenager!!|
For those of you that have followed my journey, for the past seven years, you already know that I have been on Sprycel, the entire time. My doses have changed, and my scheduled had been altered, all in order to determine the best possible control of my leukemia, with the least amount of side effects.
In the beginning, I had many side effects from Sprycel, that varied from bottle to bottle; I learned early on to monitor my side effects, and to record the lot number on the bottle. When I had a month that I felt particularly well, I would ask for the same Lot number, from the previous month. This allowed me to actually have a better quality of life, as time went on, than in the beginning.
I believe that over time, my body adjusted to the Sprycel, and after five years, my PCR finally remained below the optimal, .0something threshold. Oddly enough, once I had reached this desired "goal" I began to have large, persistent pleural effusions, which I eventually, reluctantly agreed to have drained.
Upon having my first thoracentesis, I realized two things; one, that once the fluid was removed, I could breathe much better; and two, the actual procedure was not nearly as big a deal as I had anticipated. I decided then, that having a thoracentesis three to four times a year was preferable to changing leukemia meds, at this point.
I was pretty dead set against making a change in my medication because; A. It was working so well to control my leukemia, and B. Other than the pleural effusions, I felt pretty darn good!
The thought of "starting over" with the unknown was scary; it had taken me a long time to reach a desirable PCR result, and to feel good. I suppose that I had the mentality of "Leave well enough alone," or "Don't fix what is not broken."
The problem was, the pleural effusions
became quite the nuisance! They began to return quicker and quicker, and what in the past I was able to resolve with a short medication interruption, now required a thoracentesis, and even those were getting closer and closer together.
The tipping point came when I had to have rotator cuff surgery
; I had a thoracentesis
performed a week prior to the surgery, removing 1.7 liters of fluid, in order to prepare for the surgery. The other shoe fell, when two days prior to the surgery I was told that I wouldn't be cleared for surgery, until I had ANOTHER thoracentesis.
I was like, "Seriously?" I just had this done last week! "Yes, seriously!" So, you can imagine my surprise when they removed ANOTHER 1.3 liters of fluid; apparently the fluid is rebuilding at a rapid rate, OR I really do have a trapped lung, which can result from chronic pleural effusions. UGH! Something to consider, further down the road.
On the morning of the surgery, they X-Rayed my lung, and there was still fluid; they proceeded with caution and I ended up in the hospital for three days, due to low oxygen saturation; I was also sent home on oxygen. This was a real eye opener.
I was only supposed to be off of Sprycel for a few days, but that quickly turned into three weeks. During that time, I seriously considered my options; I could continue with Sprycel and have a pleuradesis, to prevent the pleural effusions (a nasty surgery where they cause to lung to attach to the pleural sac) or I could try Bosulif, first.
It was a BIG decision, for me.
I was terrified of the side effects that people seem to have on Bosulif, particularly the massive diarrhea; you see, we were going to be traveling for the next two and a half months, by car; long road trips, with no bathrooms in sight! lol
Eventually, I convinced myself to give it a shot, while still at home; what did I have to lose? I could always go back to the familiar, if it didn't work, or I couldn't tolerate it. My oncologist recommended that I start with 100 mg a day, and slowly build up to 400 mg, per day, which seemed like the best choice, for a chicken like me! If you could have seen me take my first pill, you would have laughed! I could barely choke down the little sucker! I was terrified of what might happen!
When I realized that I wasn't going to have an allergic reaction, or heart attack, I settled in to a wait and see mode.
After an hour or two, I had some abdominal cramping, but no diarrhea! Phew! What a relief! I was nauseous and did develop a headache, but nothing too terrible. I continued onward, with 100mg, for one week; I did continue to pre-medicate for nausea, as that seems to be more my "MO" than the diarrhea.
By this time, I found myself cautiously, optimistic, and I began to take 200 mg per day; pre-medicating for nausea and with a BIG meal! Dinner. The increase didn't seem to affect me, any more than the starting dose. Whoo Hoo! Once again, cautiously optimistic!
By this time, I had also started physical therapy for my arm, and felt generally crappy, so any side effects from Bosulif were likely masked. After my first full week of 200 mg of Bosulif, I began to notice swelling in my right breast. Doesn't it just figure, nothing is ever easy!?
The swelling worsened to the point of pain; I attributed it to the Bosulif and the immobility of my right arm; both the surgeon, and my oncologist said, "Nah, couldn't be that!" My internal medicine gal ordered a diagnostic mammogram, and the physical therapist and I agreed, that it was probably the combo of the drug, and the immobility.
|It was a Stranger Things kind of Christmas!|
At this point, we were in Arizona, at my son's for early Christmas; I decided to stop taking the Bosulif to see if the swelling would go down; ten days later, it was gone; so I started back on 100 mg, of Bosulif. By this time, we were at my daughter's. I took my pill and shortly felt miserable; the nausea became so great, that it eventually led to vomiting, which isn't a good thing, as I typically pass out, when I vomit. I was wicked sick, the entire night, and totally depressed!
Since it was six days before Christmas, and my eating schedule was all over the place, I decided to cease taking this drug; one more time. Bosulif and I were off to a rough start; I needed to get through the holiday, and then I was going to give it one more valiant try; I had high hopes of it being my next life saving medication, and wasn't ready to give up on it yet!
The day after Christmas, I pre-medicated for nausea, ate a HUGE dinner and started 100 mg of Bosulif, one more time; there was nausea, but no vomiting, and my body quickly seemed to adjust to the Bosulif, on its' third go. After only six days, I increased to 200 mg per day.
By this time, I was concerned about my PCR, as I had had many breaks from Boslulif, as well as a long break from Sprycel, before I switched to Bosulif. I was seeing my oncologist in January, so I figured that I might as well, just stay on the 200 mg, and see where I was at, and after the PCR was drawn.
My previous PCR was .042: I was prepared for an increase, and hoped it would not be too high!
My "guess" was .9something, and I was correct; .962. While I had hoped it would not be that high, I had expected that it would, and I was grateful it was not a full 1%. Needless to say, I started taking 300 mg of Bosulif, as soon as I received the results. There has been no more swelling, since my arm has been out of the sling, and moving, (guess the physical therapists and I were right on that one!) and with pre-medication with Zofran, and eating a larger than I like dinner, I am tolerating the Bosulif well.
I feel great during the day, and only slightly nauseous at night. Along with a large meal and Zofran, I am eating ginger slices and peppermint Altoids, and rubbing peppermint oil on my stomach, to help combat the nausea! I will do whatever it takes and I pray that I will adjust to this new drug quickly.
Within ten days of the 300mg dose, I upped it to the desired 400 mg; thus far, I seem to be tolerating it quite well, and hope to eventually be able to cut-out the Zofran. I do not know when I will be brave enough to give that a try, but maybe if there ever is a week without nausea, after taking the Bosulif, I will give it a shot.
I pray that my labs will all be great, and that my pleural effusion will evetually resolve on its' own. I have to tell you, that even though I feel like I have tons more energy, and have been able to do things I would not have been able to do with a large effusion; there is still one there. My oncologist says that it can take quite some time to completely disappear; but I have to admit that I am a surprised, and disappointed, that it is not gone. I have been off of Sprycel for four months, which seems like ample time for it to resolve, but I imagine that I will just have to be patient, for a little longer.
The thought of having a "trapped"lung, still niggles in the back of my brain, but thus far, I have been able to squash those thoughts, back into a small little corner, of my brain. I will keep on keeping on, and when this arm is fully recovered, I hope to get back to dancing; that will be the true test!
So, all in all, my switch to Bosulif, despite the rocky start, has been a good one. Now the final determining factor will be revealed with my next PCR result. While I do not expect miracles, I do expect and hope for a decrease in the BCR/ABL, as opposed to an increase.
Until then, I will keep on, keeping on, and continue to Dance and Travel My Way Through Leukemia!
For those of you that know me; this was a BIG DEAL!