8 replies to this topic

[tinman1939]

Today marks my 10th consecutive day of taking a 500 mg Bosulif tablet.  This comes after seven years on Gleevec.  Why the switch?  My oncologist believes Gleevec is no longer an effective option for me (evidence: rising BCR/ABL and a bone marrow biopsy that showed some new mutations).  So, I took  the Bosulif plunge, having tested (a year ago) Tasigna and Sprycel, both of which were short-lasting experiments that I had to stop due to some more than unpleasant side effects.

What are my observations of Bosulif 10 days later?

The diarrhea that was present within a couple of hours of taking my first pill is still present today.  However, each day brings a different level of diarrhea.  For the first day, I had four "episodes," followed the next day by two more, then three, then one, then five, then two...  You get the point.  While the diarrhea is still with me, some days it is worse than others.

Knock on wood:  The diarrhea seems to be the only apparent side effect at this point.  Most suprisingly, the mental "stupor" I encountered with Gleevec doesn't seem to be a side effect with Bosulif - at least not at this early date in my "trial run."  My head is surprisingly clear, which is important given I have a fairly stressful executive position.

I get my first blood work tomorrow (after starting on Bosulif), so it is possible there may be other effects that aren't readily apparent (e.g., lower platelets).  We shall see.

But, I wanted to get this note out to you, as Bosulif is still among the newer TKIs in the marketplace.

Thanks for listening.

Wayne

[susanlathers]

Dear Wayne

   thank you so much for writing in.  My experience has been very similar to yours, same amount of time and same drugs.  I start Bosulif next Monday.  I am so full of dread, fear and apprehesion.  I don't see many posts on this site of those who are taking this drug.  Or, hopefully, they are all doing so well they have no need to post.  I will be watching to see if someone will answer you and also relieve some of my fears.

   What do you do for the diarrhea?  

   Please continue to update us.

Susan

[tinman1939]

Susan -

I fully understand your dread, fear and apprehension.  It is quite a normal feeling when switching TKIs, in this case, after a lengthy period of time on Gleevec.

To calm the diarrhea associated with Bosulif, I take Lomotil (or a generic equivalent). I avoid Imodium as I don't believe it interacts well with Bosulif. Getting the input of your oncologist on the use of Imodium would be wise

I'll let you know how my blood test goes today.

Regards.

Wayne

[Melanie]

Hello Wayne & Susan,

Just wanted to give you my experience on Bosulif. I've been on all the TKI's except Ponotinib and so far Bosulif has been the best for me in regards to response and side effects. Been taking Bosulif for over a year now, though at different dosages due to issues with my blood counts, which I've had with all theTKIs so not really unexpected with Bosulif. Bosulif is the only TKI that I've been able to stay on for any lenghth of time so I'm finally gaining some cytogenetic response after 2.5 years. Yea!  The only on going side effects I have that I know is directly related to Bosulif is the diarrhea and super dry skin.  My oncologist recommends Imodium to control the diarrhea and I use lots of Aveeno lotion twice a day for the dry skin. The diarrhea does have good and bad days, but what I've discovered is it's definitely worse on days that I eat a lot of raw vegetables and fruit, especially leafy greens. Cooked vegetables aren't as bad. I find I can control it pretty good by diet, without the use of Imodium, which is so much easier on the body. Hope this lessens your concerns about this fairly new TKI.  As far as labs...I have a long history of cytopenias so I get weekly labs and the Bosulif has been the most gentle in that regard.  My liver test are all in the normal range as well which is a concern for Bosulif.  Overall, I very grateful for this TKI and it may very well save me from a transplant. My latest cytogenetic test showed only 2PH+ chromosomes and my PCR was .57.  Best I've ever had!

I pray this works as well with you two and that there's less fear of this drug as time goes on.

Wayne...anxious to see your lab results.

Happy New Year to all!  Melanie

[tinman1939]

Melanie -

Thanks for your feedback.  Only had the basic blood test last week - my white blood cell counts and platelets were both in the "normal range."

My next oncology visit is set for the end of January, at which time I also will get a new BCR/ABL test done.

That will be the most telling indicator of the initial effectiveness of Bosulif.

Take care.

Wayne

[Tedsey]

Wayne, best of luck with the switch.  During the 7 years you were on Gleevec did you achieve CCyR or MMR, or PCRu (i.e. CMR)?  Just wondering how deep your response was before starting to lose response on Gleevec.

Tedsey

[tinman1939]

Tedsey - According to my oncologist, I was in "complete cytogenetic remission in 2008, but not molecular  remission," and currently "only in hematologic remission."

[mike43147]

Wayne,

I have been taking Bosulif about 60 days.  Was taking Iclusig until the FDA took it off the market.  Been through all the other TKI's never reached PCRU,until Iclusig.  First PCR test after switching to Bosulif, remained PCRU, doctor said she thought it was left over from Iclusig.  That's a whole other discussion, 

As far as side effects I still have bouts of diarrhea, maybe once a week.  I find it is caused by what I eat and how much, or should I say lack of fluids, I drink.  I lay off the chips, cookies, sweets in general and down to 1 cup of coffee a day.  I have found eating fruits, vegetables, nuts and drinking 6 to 10 glasses of water work best for me.

Looking forward to my next PCR test in 2 weeks or should I say getting the results, never like to get stuck by needles.

Good luck with your results.

Mike

[tinman1939]

Mike -

Thanks for sharing your experiences on Bosulif.  It has now been 18 days since I started taking my one-a-day, 500 mg Bosulif tablet.  The diarrhea which was so prevalent during the first 10 days has subsided somewhat.  It now occurs once every two or three days vs. every day.  That being said, a new side effect has emerged, and that is a very uncomfortable and unpleasant bout of facial acne.  I call it acne, but maybe it really is something else.  I get hurtful pustules above my eyebrows, and my head erupts with painful pustules that make washing my face in the morning and night a hurtful experience. Coupled with these outbreaks is a very itchy face and scalp. Thank goodness, my wife recommended Benadryl Itch-Stopping Gel, which I applied to my face last night and this morning.  What a relief!  While the pustules are still evident, the itchiness has largely gone away. Of course, the directions say to use the gel "temporarily," which means this may not be a long-term solution for me.

Has anyone else on Bosulif (or other TKI) experienced this facial acne and itching?

If so, thanks in advance for sharing your feedback on what steps you have taken to address the issue.

Regards.

Wayne