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Bosutinib blow.

It is now 10 days sinceI have had to stop taking Bosutinib. I had only managed to get to a dose of 200mg (recommended 500mg) before my liver objected & had a reading of over 1000, pretty impressive but this means yet another TKI that i am unable to take because of intolerance. I feel very unsettled as I've been off & on treatment for a year. I was dx late 2007.

I am lucky that I am being treated at the Hammersmith. The plan is to put me on the PACE trial for Ponatinib. I go back to London early may for bone marrow biopsy and echo & return 10 days later if all well to get the new drug. It seems that every new drug I try they say has less side effects & that is what seems to be said about Ponatinib but I have lost my confidence now this has happened yet again with Bosutinib. I feel the options are running out.

I don't know what happens on a trial drug & am hoping someone on this forum might be able to share their experience with me.? Is there anyone on this PACE trial? Any information would help.

Love to all.

Ali

Hi Ali

I was wondering how you were getting on - I did email you the other day - as I know you were having some problems with drugs. I'm sorry to hear that this other one hasn't worked for you either - have they suggested a break or stopping it permanently? I understand you must be anxious. Hopefully this new drug trial could offer you hope. I might be having to change drugs after only 6 months, so I understand a bit about how you might be feeling - although everyone is different. I will email you again -perhaps we can meet up as you're relatively local to me aren't you?

take care - you're in my thoughts

jox

Dear Ali,

I am so sorry to hear that you have shown intolerance to yet another one of the TKI's- in this case bosutinib.

I assume from you post that your liver enzymes were raised? I am attending the New Horizons conference for CML and GIST patient advocates and will have access to leading clinicians during the weekend of 13th/14th and 15th May. I will try and find out some answers and get some advice about your particular case. Please email me with further details so that I can ask informed questions regarding the problems you have encountered.

Re: ponatinib trial. I have heard good things about this drug but I am sure it too has a side effect profile. All clinical trials are more or less the same and you will have to sign up with the usual caviats. Hammersmith will however explain everything and you can always withdraw from any trial should you wish to. The upside is that you will be very closely monitored, so no surprises. I imagine your travel to the trial centre will be more often than you are used to at the moment-?

Please let me know if you have any specific worries re: clinical trials and I will do my best to put your mind at rest.

Best wishes,

Sandy

Dear Ali,

Like others on this forum, I have been wondering how you are getting on.  I am so sorry that Bosutinib isn't working out . My thoughts are with you with fingers firmly crossed for Ponatinib.

Best wishes,

Chrissie

Sandy, many thanks for that, I will email you privately.

Just to let you know, I have been refused for the PACE trial as i am to well, if that makes sense! My latest marrow biopsy last month showed the level to be less than 0.035, which is a great place to be. However I have been off treatment for many months and still have no treatment plan. My consultant at HH is discussing with Prof Apperley the way forward. It could be inteferon or they may try me on Bostinib again but only on 100 mg. It seems that I have very bad intolerance on the "normal" dose and as I have responded well in the past, a lower dose may well be right for me. I am having another PCR tomorrow at my local hospital, so they are keeping a close eye on me. I still feel unsettled thought!
I'll let you know what what when I hear anything.
Best as ever
Ali.

Hi Ali I was going to e-mail you to see what you decided, I didn't think there would be a chance you wouldn't be accepted on the trial! I'm glad your levels are low, but like you say, you could really do with a treatment plan. I hope they can find a way forward for you. I have decided not to do the trial btw, and am now waiting to see whether it will be a full or mini transplant. Let me know if you want to meet up sometime. You're in my thoughts - I hope they can help you.
best wishes
Jo