I have only just discovered your site and forum - what a marvellous resource. It is both humbling and inspiring to read about the perserverance and courage of your contributors - thank you all so much! I wondered if anyone could share any experiences or advice on my current situation? I was diagnosed with Ph+ CML in June 2014 (thanks to a pre-op blood test for a hip replacement), started on Imatinib (400mg daily), and my blood counts were soon back to normal levels. After 8 months my Bcr-Abl level is still at 4%, so I agreed with my haematologist to go onto Nilotinib (400mg every 12 hours) last week. I only managed the first two doses before throwing up and suffering from loss of balance and spinning vision, so I have reverted to Imatinib and the side effects have abated. I will be seeing my haematologist again in a couple of weeks to discuss the next steps, and so I was interested in comments on the following questions/options that come to mind: 1. Try another 2G TKI? (Dasatinib or something else - what is currently allowed as at April 2015 in England?) 2. Does anyone have any experience/advice on gradually building up dosage to improve tolerance/reduce side effects with either Nilotinib or another TKI? (I'm conscious I went straight onto "full" dosage with Nilotinib). 3. I take Felodipine (a calcium channel blocker for hypertension). Reading the recent post on drug interactions with TKIs, it looks like this might increase the exposure to the TKIs. Can anyone comment on having taken Felodipine with Nilotinib - I wonder if this might have contributed to my reaction? 4. Increasing dosage of Imatinib in the hope of getting an improved response? Thoughts on any of the above would be welcomed - thanks in anticipation. Best wishes, Mark
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Imatinib not working well and Nilotinib not tolerated - any advice/suggestions?
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mark, you still have good options. your pcr for 8 months was not that great but it wasn't that bad too. mine was 6% in almost 8 months and i changed to tasigna. you can talk to your doctor to take a lower dosage (400 mg per day) and see what's happened in 3 months and if you need you can scalate the dose. also an increase dose of imatinib can help you. you had a response, but it was slow, maybe it was just a matter of blood levels of imatinib. i change to dasatinib is also a good idea. you have a lot of options you just have to talk to your doctor and find what is better for you. good luck!
Thanks Lucas, good to hear - did you scale up on nilotinib? Best wishes, Mark
Mark... welcome. It's good that you have found this forum as there are many on here who can advise. I think all your questions are very relevant and will try to answer as best I can (although Lucas has already made some good points)
1. change to another TKI?
you do have options given you have tried both imatinib and nilotinib. So you are eligible to apply for access to dasatinib and bosutinib via the cancer drug fund. I would talk to your doctor about your co-morbidity i.e hypertension which might affect your choice of which TKi to try. I think that nilotinib may be contraindicated for some people with cardiovascular problems so you need to clarify this with your doctor. So, depending on his/her opinion dasatinib or bosutinib may well be good options for you to try next.
2. It may be that a reduced dose of nilotinib would be the right way for you to start.... I know that some patients have responded well to lower doses (of all TKIs) but you would need to talk with your clinician and maybe ask for a second opinion from one of the Imperial College (Hammersmith) CML clinicians.
3. Drug to drug interaction should be taken into account and I think you would do well to make sure you flag this particular interaction of Felodipine with TKIs to your doctor. Raised levels of nilotinib may well be the cause of your initial intolerance so changing your treatment to something other than Felodipine might be needed.
4. Increasing the dose of IM might work... you would do well to ask for a blood plasma level test no matter which TKI you choose as too low a level (less than 1000 nl per ml) may be the cause of your slower response to imatinib.
I hope this is helpful,
Sandy
hi, mark. somehow i'm lucky and don't have many side effects from those drugs. on nilotinib i went to 800mg and never had to lower the dose. i just have a little fatigue, some skins problems and low counts (not that much nowadays). hope you can find a treatment that works for you. good luck!
Thanks for your feedback Sandy & Lucas.
A brief update - hopefully of use to someone in future.
Discussed with my Haematologist and the Pharmacist at the hospital, and switched from the Felodipine back to Ramipril (an ACE inhibitor), and then gradually went back onto Nilotinib (200mg x 24 hrs; 200mg x 12 hrs; 400mg x 12 hrs) and so now on full dose with no problems.
Best regards
Mark