Having been diagnosed with CML about 3 weeks ago, I have just finished a course of hydroxycarbamide and start TKIs very shortly.
From the start (before any drugs) I have been experiencing light headedness/dizzyness on random occasions. This doesn’t seem to be brought on by any particular activity.
I wonder if anyone else has experienced this?
Thanks.
David
Hi, I had this so my doctor checked all my vitamin levels and found that my vitamin B12 was extremely low .He wanted me to have injections to bring it up quickly but I didn't fancy that so I started to take a supplement .A blood test a few weeks later it was back to above normal and my dizziness had gone .Worth having this test done to see if you are deficient in anything then start taking the cocktail of vitamins a lot of us take .Hope this helps, Denise.
Hi David,
You dont say which tki that you will be taking?
With nilotinib you will need to fast but with the others you might find that taking the pill with a substantial meal and a few glasses of water could be crucial as otherwise you might suffer from nausea and also headaches/dizziness.I have been on imatinib for 15 years and still sometimes dont get it right.
I suggest you experiment with foods that help you to absorb the pill without nasty headaches and nausea etc-go for high carb stuff like pasta or a substantial sandwich or full meal .I suggest please(except nilotinib) dont take on an empty stomach especially with imatinib.
Re supplements -have you had your Vit D checked and if needed take it with Vit K:taking it wont harm you anyway nor will the sun in moderation.
So in summary when you start your tki I suggest that you experiment and then find the best foods for you in combination with the tki and the right meal and time of day and keep hydrated with lots of water.
Lots of good luck
John
Hello John
Thanks for writing. I am about to embark on Imatinib - good to know you have been taking it for 15 years! The advice is much appreciated and follows the guidelines given in the mass of leaflets and booklets I have been given.
It sounds as though I should get my vitamin levels checked, as both you and Denise have suggested. I shall ask my GP at our next meeting (soon).
My dizziness has been apparent from before the time that I was diagnosed and none of the doctors seem to very sure, except my GP thinks it is a “symptom” of CML. This seems to be borne out by some articles I have found on the internet.
All the best
David
I was started on imatinib. It is the cheapest of the TKIs so haematologists are driven in that direction. I have also been told that it is the safest TKI for those with conditions such as diabetes and/or high blood pressure and/or high cholesterol. I did suffer from a range of side effects on imatinib.
After 22 months I hit a plateau and the consultant said "we are clearly not winning on imatinib". I was swapped out to dasatinib. So far on dasatinib, I have no apparent side-effects.
You may find that you suffer from cramp as time goes on.
