10 replies to this topic

[elvis]

Dx'ed July 2009.

Gleevec 600 mg 2009  - 2010 Switched to Tasigna due to slow response

Tasigna 800 mg  2010 - 2014  Switched to Sprycel due to severe rash and Plaque build up in arteries

Sprycel 100mg 2014-2016    2016 March Pericardial effusion.  Had difficulty breathing and walking.

 

Now my onc is considering Bosutinib.  Is it a good drug? How effective is it?  How many CML patients take it?

 

Little concerned but my options are closing one after another.

 

MMR for last 2+ years with a IS scale .05 (it does not move down beyond this level no matter what drug I have taken).

 

Please reach out to me if you are taking Bosutinib. Want to share some notes on initial side effects, effectiveness etc.  I do not see enough literature or experiences on Bosutinib in this forums.

 

Any advice or suggestions, or support groups please forward.

 

Little Anxious after all these years.

 

Thanks & Regards

Elvis

 

[Buzzm1]

Elvis, from the Chronic Myeloid Leukemia forum http://bit.ly/1PauuIu use the search feature, upper right, to do a search on Bosutinib; there are 116 threads that you can look through while waiting for responses:  

 

Buzz

[SusanL]

Elvis, be encouraged.  Bosulif is a good drug.  I've been on all of them since 2006 and will do what ever I have to in order to stay on this one. I have been on it 2 years.   They all have side effects, some you can work around some you can't.  The worst side effect for me with this drug is diarrhea and sometimes mild nausea. But not every day.  Sometimes I can go a week or more with no diarrhea.   Imodium works for the diarrhea but may take a couple doses.  I have also dropped 100 mg to 400.  I will know whether this is enough to keep my PCR in the undetectable range in April.  I was dreading switching to another drug, worked myself up to a real knot of anxiety but now I can say it is better than any of them.

Not a lot of people on this drug but they are out there and I hope they will chime in as we all have different experiences.

My prayers for you

Susan

[Melanie]

Hi Elvis,

As Susan said, be at peace. I've been on Bosulif since it was first approved about 3 years ago. I've also been on all the others and found Bosulif to be the most gentle to me. Since you are already at MMR, you may not need the full dose of 500 mg. I hear that 400 is becoming more common, which is also what I'm on. Hopefully your Onc will let you start low and gradually work up as your body adjust to this new TKI.

In the beginning, the worst side effects were nausea and diarrhea. Both got better over time. I take the Bosulif with my evening meal so I'm sleeping through the worst part of the nausea. Haven't had good luck taking it at any other time.

Hope this helps alleviate some anxiety and you hear about more good experiences with Bosulif. I feel very fortunate it came along as I too was running out of options. Best to you!

Melanie

[Buzzm1]

Elvis, being that you were already MMR, I am surprised that your Onc didn't have you take a drug break and then lower your Sprycel dosage to 50mg.  As Melanie mentioned you should not be required to start Bosulif at full dosage (500mg) .. you've been through the wringer .. 600mg Gleevec when the standard dosage is 400mg; 800mg Tasigna when the standard dosage is 600mg; and then 100mg Sprycel; I can't blame you for feeling a little anxious  ... after all that we would all be anxious.  

 

Be willing to argue the case for a lowered dosage ... I think one of our members started Bosulif at a greatly reduced dosage and has had good luck with it ... he'll be on later to fill you in.  Here's a post by him http://bit.ly/1Pb4gTb

 

Good Luck to you ... 

[chriskuo]

I switched from Sprycel to Bosulif primarily because of pleural effusion.

I started at 500mg and had problems.  After a break, I resumed at 300mg, It has worked well for me with manageable side effects.

After 6 months, I reached MMR for the first time after 5+ years of treatment.

[Ray99]

Elvis,

I have been on Tasigna for four years and reached MMR. I am concerned about the long term toxicity. My question to you is how do you find out that Plaque is built up in the artery? Do you have any symptoms or through blood tests?

Thanks

[rcase13]

At the one year mark on Tasigna I had an echo done on my heart. My understanding is they can measure using that test. But I am not sure. I believe they will do one every year. This is the second echo I have had. I had the first one when I was diagnosed. I am interested in this as well. I would like to catch it early as possible.

[elvis]

While switching to sprycel I had a Doppler done on my carotid and sub-clavian arteries to measure the plaque build up.  This is due to fact I had asymmetric blood pressure readings between my right arm and left arm.  My cardiologist thought this could be due to plaque build up in a right sub-clavian artery.   Recently I developed some pressure on my chest and a angiogram was done to figure out I had plaque built up in my heart. I am told nuclear stress test is an option to find out if you have any build up of plaques in the major arteries to the heart.

[elvis]

Thanks Susan, Mbrown2010, Buzzm1, Chriskuo. I am very happy to hear you are all doing well on Bosulif.  That is my hope now.  I will post more on my side affects and take some tips on how to manage them when I start.

 

Definitely looking for some support and help in the initial stages.  Thanks for all the kind words.

 

Regards

[Ray99]

Elvis,

Thanks for the info. I have not done any of the tests you mentioned. My left arm BP reading is about 10 higher than the right arm. I don't it is a problem or not. I will consult with a Cardiologist.