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Imatinib reduction below 400mg

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Hi
I am 5 years on my CML journey and am a 59 year old male. I finally achieved undetectable status 9 months ago. I take 400mg of Imatinib daily and suffer from all the usual side effects of which bone pain, fatigue and diarrhoea are ever present.

I spoke to my specialist at our last meeting to discuss the possibility of reducing the dose now I have reached 2 consecutive undetected PCR results. I was hoping that a reduction may reduce the side effects.
We are to discuss further in 3 months after another PCR test.
However I have read several conflicting views on this. One being if you take a sub optimal dose below 400mg then you run the risk of becoming intolerant to the effects of the drug.
While I have also seen people advocating it to reduce the side effects.
Any advice or experience of the same would be welcome.
Mark

Hi Mark

I'm 18 years into taking imatinib, starting on 400 mg after diagnosis aged 50. The thread on the link below goes through the journey of reducing to 200 mg for 12 months, then a TFR attempt which lasted 17 months before my BCR-ABL rose to 0.154%, then another year on 400 mg, and now a return to 200mg where I have been undetectable for the last couple of years. https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po...

You may also find this presentation useful. https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-...

I don't think the sub-optimal dose/intolerance question is valid for imatinib. In the presentation Prof Clarke says that anyone who has lost MMR after reducing to 200mg from 400mg regained MMR when they went back to the full dose. I certainly had a major reduction in side effects when I went to 200mg; less cramp. less flatulence, no eye bleeds, less fatigue. The improvement in side effects from 400mg==>200mg was much more significant than the further improvement when I stopped taking the meds. I am stable on 200mg and not tempted to try TFR again.

I hope that is useful.

best wishes

Alastair

Hi, I changed from Imatinib 400 mg because of dreadful side effects and changed to Dasatinib ,took 50 mg at the start then when undetected which didn’t take very long at all I lowered to 20 mg,now I only take 10 mg . You could start on 20 mg being undetectable and I am sure you will feel so much better quite quick .A mild headache in the morning for a a little while for a few days then it wears off .Made such a difference I felt like me again .

Many thanks Felix for sharing

Mark

Thanks Alastair for sharing the links and advice.

I am definitely going to ask for the reduction at the next review

Mark

Hi Mark,
I was diagnosed in 2007 aged 47. Imatinib was very new then. I went onto 400mg daily and over time achieved MMR. For me the bone pain subsided after several months but the fatigue never improved. I enrolled on the Destiny trial in 2013 and went down to 200mg daily for 1 year after which time I stopped treatment altogether. Now 10 years later disease is still undetectable so I would suggest it’s definitely worth discussing with your doctor.

Hi Colin

Many thanks for post. I have just dropped the dosage to 200 mg daily after consultation with my Dr.
Hopefully I will begin to see some reduction in my side effects over the coming weeks / months.

Re the Destiny trial, my oncologist has some doubt as to whether I will respond accordingly as it took me over 4 years to reach MMR.
Apparently there is a correlation of speed to reach MMR and effective destiny success.

Mark

Hi Mark. Good luck. There is a correlation between whether or not you maintain MMR on 200mg to likely TFR success. If your BCRABL stays undetectable on 200mg, you have a good chance of successful TFR. Remember that there are no instances in Destiny of people who lost MMR after reducing dose who did not then regain MMR on increasing again. Let us know how you get on.

Hello Mark,

Delighted to hear that your specialist agreed to the imatinib dose reduction. The very best of wishes for your continued journey. I myself am about 5 years into CML and reduced my dosage to 200mg/day two years ago. I did get some relief from the side effects then, and I trust you are too.
We all seem to vary somewhat in treatment progression, side effects and results.

6 weeks, ago I started TFR, so I am keeping my fingers crossed that this is long term successful. One of the immediate effects was that the cramp I had been suffering from almost instantly went. I am waiting with bated breath for the withdrawal symptoms to kick in! However having been on such a powerful drug for 5 years, nothing generally happens quickly, so I think that provided the TFR holds I would expect to feel fully recovered in about 18 months. However in the meantime I am stuffing myself with marmalade and grapefruit in case of a TFR failure!

Worth reading Scuba’s posts re CML if you haven’t already. He is extremely knowledgable and has clearly done a lot of research. I have followed his advice on vitamin D supplements, and it has made a most noticeable difference to my health. His comments on the deeper effects of vitamin D on oncology generally are very interesting also.

David