21 replies to this topic

[Tucker1]

I have been on bosuitinib for one month and it has not been going well. My doctors do not have any other people on it so no one knows what to expect. This is fourth TKI in 11 years and I am hoping this one will work for awhile any information about bosutinib would be appreciated,. Thanks

[chriskuo]

What issues are you having with bosutinib?  Efficacy or side-effects?

 

I started it 6 months ago after having problems with the efficacy of Gleevec and side-effects with Sprycel, Tasigna, and Iclusig over the first 5 years.  After 3 weeks on 500mg of bosutinib, I became ill and was in the hospital for 5 days.  My fever and edema cleared up and I restarted bosutinib 6 weeks later on a reduced dosage (first 200mg and then 300mg).  I seem to be tolerating this dosage well and my BCR/ABL has stabilized at about MMR.

[PJM]

I started bosutinib last week at 300 mg daily after lastest pcr indicated a rise from 2.9 to 6.  Dr. decided to increase the dosage to 400 mg as of yesterday.   I have failed Tasigna, Sprycel, and all three dosage levels (15 mg, 30 mg, and 45 mg) of ponatinib.  I too am looking for information from people who have taken this drug.  So far it makes me nauseous with waves of a queasy not so great feeling like I am going to throw up that comes over me.  I am taking ativan at night which gives me some relief. 

 

I really need to bosutinib to work as this is the last drug before dr said I should strongly consider having a bone marrow transplant so I am scared to death.  Dr. will not pull another pcr for a month as the drug needs a chance to work.  Just had another BMB last week and I am still waiting for those results. 

[Tucker1]

Thanks for the response.  I am not sure if it will work for me my last BCR was 0.04 and I am not due for another BCR until September.  The problem now are the side effects I feel sick to my stomach all the time, pain in my stomach, vomit, diarrhea, no appetite, I can only eat small amounts, I often feel like I have the flu and I have no energy.  My last labs showed my liver enzymes were 3 times normal so they reduced my dose from 500 to 400mg.  I will have lab work next week.  I have also lost weight, I really don't have much to lose so the Dr. is concerned.  I was on Gleevec for 1 year and at the end of the year my BCR was 6.5 so went to Sprycel levels dropped quickly and my BCR was week positive, but at about 4 and a half years I developed colitis and so had to stop.  Then to Tasigna, effected my liver at first then settled my BCR remained low then about 4 and a half years again I developed QT prolongation, reduced dose but soon it returned.  Now I am on Bosuitinib, and I am really worried.

[Frogiegirl]

Tucker can I ask you how often they did an ekg when u were on tasigna to test for QT? I worry my doc isn't testing often enough. ..I'm always asking "hey do I need an ekg"? I'm sending you lots of good vibes. ...stay strong;)

[Tucker1]

At first once every two weeks then once a month after a few months once every three the same time as my BCR. Then when it started going up once a week when it over 386 first time they stopped meds and checked once a week until normal then went back on same dose once a week again. When it started to go up again they cut dose in half once it stabilized once every two weeks. Then it went back up over 386 so had to stop completely. Thanks for the good thoughts could really use them.

[rcase13]

Did the QT go back to normal after you switched meds?

[lernerv]

Tucker, I am a 10 year CML survivor. Started on Gleevec 400 and then 600 mg and then had to move to Sprycel due to side effects. Heart issues with sprycel brought me to Bosutinib two and a half years ago. I am on 300 mg and it has been good. Started out with nausea and other intestinal issues which greatly diminished after about 6 months. I do have pancreatitis so had to eliminate alcohol and watch diet but lipase has returned to normal as long as I am careful. I have found Bosutinib best for me by far as far as maintaining a normal quality of life. I take my meds with dinner as have found that's best time of day. I take calcium with magnesium every morning and that has helped with bone pain. While I am not undetectable, my disease levels are very low and my doc has been happy thus far. I hope you will feel better and adjust in time. My best wishes to you, valerieL

[Tucker1]

Yes the QT returned to normal after I stopped tasigna. I have found the same dinner time is best to take meds. I hope I can adjust as you have I feel like I am running out of options. Does the fatigue get better? I have never felt so exhausted I am a teacher and off for the summer but I have to return to work very soon I am keeping my fingers crossed. It is good to hear from someone who is having a positive experience, thanks for responding.

[lernerv]

Yes the fatigue does get better. I travel for a living and have found I need to take naps when I can, usually on flights, and just not push myself too hard. I get a solid 8 hours at night when possible and all this helps. Hope you find improvement over time...Valerie

[Tucker1]

My bosuitinib journey has hit a roadblock. My liver enzymes went up to 3 times normal so my does as cut from 500 to 400 mg after two weeks new blood test my liver enzymes are AST 5 times normal and ALT 8 times normal so I had to stop. So now blood tests once a week again and start again at lower dose. I appreciate the break I was feeling pretty sick, losing weight and no energy. I hope I am not as sick on a lower dose. I am also really worried now can I take this drug and if not what next.

[PJM]

I hear your fear and I share it too.  Bosutinib is in reality a last resort drug and those few of us who are taking on it are hoping it will be the magic bullet we so desperately need.  Along with taking this drug comes the back story in our cml journeys of other tkis that we have taken and failed.  What I don't think others who have had excellent and fast results with the main tkis and are even successful in either reducing their dosage or eliminating them entirely may not fully realize is that those of us on bosutinib have geared up several times with expectations of these miracle drugs working only to have of our hopes crushed.  The process is devastating.  Even my doctor no longer has the encouragement that I heard in his voice when I was on Tasigna or Sprycel.   Living daily with an uncetain future, not to mention the multiple trips weekly for blood tests and the constant waiting for results,  is very difficult for me as I suspect it is for you as well.  All I can say is hang in there - sometimes it is hour by hour.  

[Tucker1]

PJM
Thank you so much for your response it is like you took those words out of my head. Some days I feel I am against a wall waiting , I know something will happen but I don't know what and the waiting is consuming.

[kat73]

PJM and Tucker - I am so sorry the CML road has been so rough for you.  I think you're right that most of the posts on here are kind of from a different plane, and it makes you feel - for lack of a better phrase - left out.  I think when we read of your stories sometimes it makes those of us who are having varying degrees of success and luck afraid all over again - takes us back to those awful beginning days - to contemplate the concept of these TKI's suddenly not working for us anymore.  And so we're silent in the face of your pain.  But the truth is, we're all in this together, and although most days we are lucky to kvetch about relatively minor stuff, we are all in uncharted waters and there could be a big nasty surprise still waiting for us in a decade.  We don't know.  I have pestered and peppered two different oncologists with demands for reassurance that nobody progresses to blast crisis after being OK for X-number of years, right?  right?!  I get just enough guarded but happy talk back to allow me to shove the fears and anxieties back into the closet.  But you have yours right out in front of you, in your face.  I for one will try to be more sensitive to that. Please keep posting about bosutinib and your experiences.  This could be ahead for many of us and we'll need the information. 

[Tucker1]

Wanted to post an update and ask for information on high liver enzymes. I am still off medication and waiting for my LFTs to return to normal this. Is the 4th week and my AST is117 and AST is223. I am getting blood work weekly and the plan is to wait until the LFTs are normal and try again at 200mg the longer I wait the more stressed I become. How long does it take to return to normal and what does it mean if they don't. On the up side I feel better and I have more energy.

[chriskuo]

Do you know what your AST and ALT were before starting bosutinib?

 

Could they have been somewhat high previously and exacerbated by bosutinib?

[Tucker1]

No my LFTs were normal the only time they have gone up was when I first started Tasigna. They went up to where they were last week. Stopped Tasigna and they went back to normal in a couple of weeks then I started Tasigna at a low dose and went up slowly that was over four years ago.

[Dana]

I have been on 500mg Bosulif for 2 years now. It has been the best drug for me as far as side effects go! Very little side effects. I started on Gleevec and had to switch to Sprycel after 5 years due to severe brain fog and fatigue. My leukemia cells have always been at less than 0.010% on all meds and I have never gone up or down in percentage. After 5 years on Sprycel the brain fog became unbearable and I was switched to Bosulif, and I have felt great since. Some minor fatigue but hard to tell if that's from teaching students with severe autism or having 4 teenagers at home!

[Melanie]

I've been on Bosulif since it became approved, a little over 2.5 years. It's been the best TKI for me and got me to CCyR, where I was not able to stay on any other TKI long enough to obtain that wonderful milestone, due to cytopenia. I started on 200 mg and slowly moved up to 400, where I'm at today. In the beginning, it knocked me down with the nausea, fatigue, and GI issues, which all got better in time. Now, I still have fatigue and some GI issues, but otherwise not so bad. I have had to adjust dosage at times with the high liver counts, but usually back to 400 mg within a couple weeks or so. The best time for me to take it is with dinner too, so I sleep through the worst of the side effects.

Bosulif has been the miracle drug for me. Last resort before transplant. I still struggle with cytopenia, but am stable. Last month, my BMB showed a Philadelphia chromosome and some other abnormalities, so I may have lost CCyR, but we're retesting in November. Praying it's just a fluke and all is well.

I love hearing all the success stories as well as the ones not so fortunate. They all inspire me and give me hope when I'm struggling with the unknown future and the waiting game. The information is so much more and real than any other internet search or doctor's office. I've learned things here that I've latter discussed with my doctors and sometimes resulted in a better treatment plan or have tried different solutions that have relived some side effects.

Thank you to everyone who ask questions, share their experiences, offer support, encouragement, and make us laugh! It all helps. I never forget, as I'm sure most of you don't either, that this is a serious disease that has the potential to take our lives and sometimes becomes overwhelming. I always come here to this forum, to people who are going through the same things, who understand. It's like a big group hug!

[kat73]

Gosh, mbrown, I sure hope the November test shows progress.  Your road is so hard.  Don't you just love those weeks of waiting and wondering?  Whenever I start sort of falling apart, I check the calendar and realize, yup, another PCR coming up in a couple of weeks.  Even when my mind doesn't register, the body seems to!  I will keep all my fingers and toes crossed for your next news to be good.