85 replies to this topic

[Darlene_Jack]

I'm going to be starting Bosutinib as soon as my insurance approves. Is anyone else on this? If so what are the side effects. Hope everyone is in good spirits. One breath at a time

[Trey]

Diarrhea and nausea are the two most often cited by folks here.  We have at least 5 others on Bosulif (Bosutinib) and some will likely reply.

[chriskuo]

I started on bosutinib a little over a week ago. I have been feeling better (recovering from pleural effusion on Sprycel).
No digestive problems except mild episodes of diarrhea on 3 days about 10 hours after taking the pill (so less than half the days). So far no need for the Imodium I stocked up on.
Although the majority of people have some diarrhea, I read that the median number of episodes is low and is not a long-term problem for most.

My platelets dropped slightly below range on the first blood test. I hope that stabilizes.

Anybody here who can report on longer-term usage?

[lernerv]

I started on 300mg Bosutinib 2 years ago, have been PCRU for about a year now. I was previously on Sprycel and Gleevec prior to that (for 2 and then 6 years respectively) having switched drugs due to adverse side effects.
I have not had any issues with diarrhea except first couple of weeks. I have some upset stomach issues but ginger ale helps control this well. Smaller and frequent meals seems to help the nausea. Some mild abdominal pain but very tolerable. I was diagnosed with pancreatitis about two months ago, so no alcohol and low fat diet a must now. I can handle this but really miss my evening glass of wine! Next PCR and CBC in April so,will see how the results are then as hoping pancreatitis under control. All my other blood work has been normal. Hope you will tolerate it well Darlene Jack and don't worry , one day at a time....

[chriskuo]

Lernerv,

 

What showed up in your blood work related to the pancreatitis?

[lernerv]

My lipase was about 4 times higher than normal and I had more abdominal area pain and discomfort. However I had been moving a lot of boxes and thought the pain was indication I must have overdone it .
I had abdominal ultrasound to check gallbladder etc but all was normal. Stopped Bosutinib for a week and redid blood work and lipase was back to normal. I restarted Bosutinin and redid all blood work and looks normal, but have stopped any alcohol consumption and watching diet very carefully... so far so good.

[Darlene_Jack]

I had boarder line Pulmonary Hypertension so I was taken off Sprycel.  The other TKI's I was told have similar side effects so my Dr wants to stay away from those.  It looks like Bosutinib is it.  We shall see.  Hopefully it works, thank you all for the feedback.  Doesn't look like a whole lot of peeps are on this.  I hope to stay in touch with those of you that are taking it.  take care and thanks again

[pammartin]

Dr. Simon, my PH specialist at Presby in Pittsburgh pulled the Bosulif off the table for me. I am waiting on PCR test this month, I decided to hold off taking till this test. I was to start first part of January.

When Dr Simon reviewed my current meds he said the Bosulif is too close to Sprycel and dangerous for me because of the PH. He ordered an echo I had to do immediately although I explained I had not started the med. Seeing oncologist tomorrow, am interested in what they have to say.

Just be careful when taking the Bosulif, you know the symptoms to look for and how you feel. Doesn't hurt to be too cautious. Best of luck.

[Darlene_Jack]

Thanks Pam for the heads up. I will definitely be on alert with this, especially since I haven't heard a lot about this one. Take care

[Darlene_Jack]

Let rev n Chris. Please keep me posted on how your doing on this TKI. Thank you all. Take care

[Darlene_Jack]

Pam keep me posted also if your dr does start you. I'm suppose to start mine this Thursday. It was shipped to me today. I will keep you all posted. Thanks again.

[pammartin]

If my PCR test remains undetectable I will not start the Bosuliuf. Right now the PH scares me more than the CML. If the CML is detected, then I return to TKI.

I have given this a lot of thought. If I have to return to TKI, I will take Tasigna. With the choices available, I see no reason to chance the Bosuliuf when there are other viable choices.

I will let you know what happens tomorrow.

[Darlene_Jack]

Your in my thoughts. Please do keep me updated. My pulmonary hypertension is better. Just hope the new TKI doesn't agrivate it. Look forward to hearing from you.

[Melanie]

Hi Darlene Jack! I've been on Bosulif since it was first approved after all other TKI'S proved too harsh for me with side effects and severe cytopenia. 2.5 yrs later I'm still able to tolerate 400 mg. Its been the only TKI, I've been able to tolerate for any length of time at any dosage. First few weeks the main side effects were nausea, headache, and diarrhea. I've learn to take it with my evening meal and end up sleeping through the nausea. Overall, it's been the best TKI for me. I started at 200 mg and worked up to 400 over time and that helped my body adjust to it. Can't take the standard dose of 500 yet, but the 400 got me to CCyR, so I'm good.

Hope it works well for you too. It's very comforting to know we have so many options. Wishing you the best!

[pammartin]

Ok, Dr Mulllens is not agreeing to any form of stopping the medication and he insists that every trial where people have stopped lose response within two years.  When I explained some on here have or are going on longer periods he dismisses the information as non-credible because it is an Internet site.  He also shared he just attended a seminar for hematologists ( I guess it was a huge event) and the standard remains the same for CML treatment, perhaps lowering doses but disagrees with the stopping of a TKI.  He again stated the facts given at this seminar were no patients remained undetectable within two years after stopping TKI.  I chose not to argue. 

 

Because he believes stopping TKI is not an option he is sending me back to Cleveland Clinic.  He is confident they will have greater information and deal with cases similar to mine.  I am unsure if he will monitor me in the future or not.  This was not discussed.  They pulled a PCR test and general labs with a few extras.  I had another echo to compare with the last. 

 

All there is left to do is wait for the appointment in Cleveland (not scheduled yet) and the results from the PCR & lab tests.

 

Summary, I know nothing more after the appointment than I did this morning. 

[Marnie]

Sounds like going to Cleveland is a better idea than staying with this guy.  You have obviously lost confidence in him.  I went through 3 oncologists pretty quickly.  It's important to find someone who has the right style for you.

 

I can't imagine your frustration.  Hang in there!

 

Marnie

[gerry]

Hi Pam,

So your doc is saying the information on the ASH site is bogus, amazing.

Hopefully the docs at the Cleveland Clinic are a bit better informed.

 

One of the great things about my doc is was that he was willing to change his outlook on my treatment.

 

Good luck with your results.

[chriskuo]

Gerry,

 

I think the results presented at ASH are in the context of a clinical trial.  Pam may need to try to qualify for a clinical trial.

I hope Cleveland Clinic will be able to help her.  A hemotologist in local practice attending ASH would here that discontinuing

the TKI is not the current standard of care.

[gerry]

Hi Chriskuo,

 

Pam is too far along for a clinical trial.

 

I've been off Gleevec now for 15 months with my doctor's consent,

Pam (hopefully you don't mind) Pam's issue is that she has stopped due to the PH, but there are issues with her current doctor. Pam needs a doctor that is happy with her stopping and will monitor her.

 

Info from Ash 2014

https://ash.confex.c...Paper74060.html

[Billie Murawski]

Ok, Dr Mulllens is not agreeing to any form of stopping the medication and he insists that every trial where people have stopped lose response within two years.  When I explained some on here have or are going on longer periods he dismisses the information as non-credible because it is an Internet site.  He also shared he just attended a seminar for hematologists ( I guess it was a huge event) and the standard remains the same for CML treatment, perhaps lowering doses but disagrees with the stopping of a TKI.  He again stated the facts given at this seminar were no patients remained undetectable within two years after stopping TKI.  I chose not to argue. 

 

Because he believes stopping TKI is not an option he is sending me back to Cleveland Clinic.  He is confident they will have greater information and deal with cases similar to mine.  I am unsure if he will monitor me in the future or not.  This was not discussed.  They pulled a PCR test and general labs with a few extras.  I had another echo to compare with the last. 

 

All there is left to do is wait for the appointment in Cleveland (not scheduled yet) and the results from the PCR & lab tests.

 

Summary, I know nothing more after the appointment than I did this morning. 

Hopefully Cleveland will steer you in the right direction. We could be Thelma and Louise and head out west where the really good cancer centers and oncs are. ROAD TRIP who wants to go?