Hi to you all. I was diagnosed with CML over 6 years ago and from the beginning I have been prescribed Imatinib 400mg daily. My bloods are taken taken every three months and I have always had excellent results. Lately however, my side effects have now increased, periorbital swelling, lower leg oedema every evening which does abate by morning, also muscle cramps,legs and hands, joint pain, diarrhea and nausea and lethargy. I speak with my haematologist a week after my blood work and am hesitant to ask for a change on medication as , as stated , I have excellent blood results. Any advice would be greatly appreciated. TIA.
You are here
Imatinib 400mg
Hi Buzz, thanks for your prompt reply. I have a telephone consultation with my haematologist tomorrow and I will certainly bring the subject of reducing my Imatinib with her. My problem is my anxiety,but hopefully after conversation and her reassurance I I may go ahead with a reduced dosage. Thanks again, I will post the outcome on here.
Vonnie
Hi Vonnie,
This about par for the course in terms of side effects so I would stick with it as you would need to consider the alternatives very carefully.Dasatinib leads to pleural effusions in 20% of all patients taking unless you opt to take it on a lower dose.Nilotinib has that fasting regime prior to taking the pill and has to be taken twice a day I believe;it is also quite hard on the heart I have read.
Prior to 2002 it would have been interferon alpha and the dreadful side effects prior to eventually moving into accelerated then blast phase.
Periorbitol odema-use a good eye wash preferably plant based and get your eyes checked out with an optician on a regular basis;if you have blepharitis use blephasol solution for eye hygiene.
Leg odema-regular walking and exercise helps
muscle cramps etc-check calcium and magnesium levels and ensure your vit D is not deficient:take good supplements as required.
Diarrhea-take a bulk forming laxative like psyllium husk or Fybogel or Normacol(with cereal).It helps with stool formation .
Nausea-keep very well hydrated ;take the pill with a considerable meal preferably a bit stodgy like pasta or similar.
I have been on imatinib/Glivec for 17 years and some of the side effects get better with time and some get worse;I dont know if much has been written on the long term side effects of tki s but that is the subject of another posting.
Regards
John
If you have had good results for that length of time a dose reduction is worth trying. I think everyone who has tried this and their bloods have deteriorated have regained their results when they increased the dose again. When I went for 400mg to 200 mg imatinib I stopped getting cramp, stopped eye bleeds, reduce lower leg oedema, and improved energy.
Hi to you all and thank you for your very useful and informative advice. Today I had a meeting with my consultant and I am very pleased to say that I have been offered a month's break from Imatinib, after which I will meet with my consultant to discuss future treatment.
Vonnie
Hi Buzz
Yes my consultant will do my blood works in 4 weeks time, I will then meet with her for discussion as to whether to restart then or if bloods show good response to break I may be offered a longer break from Imatinib. It obviously will depend on results. Whatever the outcome I am extremely grateful to have this break. Thank you for your response.
Vonnie