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Changing from Imatinib after 15 years

At 81 I have been taking 400 mg of Imatinib for 15 years.  For 10 of those years I enjoyed a complete molecular response, fairly minor side effects and have been able to satisfy the medical requirements for a pilot's licence. I keep pretty fit by cycling, albeit with some electrical assistance. I have been very lucky indeed to have enjoyed so much of life despite this awful cancer.

Over the last few years, my BCR-ABL results have not been so good and, more recently, my oncologist is telling me that I need to change treatment to one of three more modern TKIs, Dasatinib, Nilotinib or Bosutinib. He tells me that each of these introduces me to a new range of side effects and some of these could be quite risky at my age. e.g. heart failure, fluid on the lung and/or diarrhoea.

I also cannot help wondering why my results have deteriorated recently and if there is anything I can do to reverse this decline. For example I read that peppermint tea can reduce the effectiveness of Imatinib and, although I never drink tea, I do eat a lot of extra strong peppermints. I cannot remember doing this years ago.

I wondered if the experience of others on this forum might help me to decide what action to take. I have a few months until my next blood test so, if there is any action that can reverse this process, I have some time for it to kick in. I have cut out the peppermints for the time being. Of course, I am aware that this maybe just that my system is not responding to imatinib like it used to.

This must be beyond upsetting for you.  I am right behind you (69 years old, 11 years CML), and I'm always - way in the back of my mind - secretly terrified that the meds will stop working someday.  After all, that is the story of cancer and chemotherapy.  It works for awhile - sometimes a very long while - and then, it doesn't anymore.  Well.  Let me get back to a more positive note!  I think your onc is right, a change in meds is in order.  There must be a tiny change that has happened to your particular, personal CML - and not due to peppermints!  But the good news is, what "escapes" one TKI can probably be nailed by another, just because of its different makeup.  I can relate to your reluctance to change after all these years.  Having said that, when I switched from imatinib to dasatinib my daily life, in terms of side effects, only got better.  I did run into the pleural effusion side effect but, again, it caused me no symptoms or interventions.  Also, I had been on higher dosage, which was a mistake I don't think they make anymore.  You, for instance, after all those years of undetected, should not start dasatinib at higher than 50 mg.  I think you're going to have a good result.  You've been brave so far, just be brave a little more and make the switch.

Hello John

Do you take a vitamin D3 supplement?

there are many threads on here about the benefits of vitamin D3 in conjunction with K2. 
 

While I am not saying it will be the answer to your issues it will definitely be worth you reading all the helpful information on here.

Take care

Diane

 

Hi, if you have to Dasatinib at 20 mg should do the trick with hopefully no side effects ,also aswell as vit d and k2 take a couple of grams of Turmeric with added black pepper that might help too ,also helps with inflammation but check with your doctor first if you are on blood thinners .Good Luck .

Hi John, I was diagnosed January 2015 and was on imatinib for the first 9 months, in September 2015 at my check up I was informed the medication had “failed” the oncologist even asked me if I had been taking the drug, from that check up, I was, and still am on 800mg a day of Nilotinib, 6 years later everything is fine, I’m 64 in May but I still accept I will have some “dark” days ahead, but I believe, like you, watch your diet, plenty of walking, and grab every day and enjoy!

Peter.

Thank you Diane (and all the others) for your response(s). Yes I do take D3 (4000IU) every day. I have actually become somewhat of a crusader for it, asking everyone I meet if they take it.