Hi everyone, i haven't posted for a few years now and i was diagnosed back in August 2005 and have since been on Imatinib 400mg one a day. i was 45 years of age then and i'm now 56 years soon to be 57 years so i have had a good run on Imatinib, at first the drug didn't seem like it would work then it kicked in and i'm still here by The Grace of GOD.
The draw back to this is the Extreme Fatigue and Muscle Cramps that inhibit normal day to day life and planning anything long term, as the energy levels deplete rapidly and take a lot longer to recharge.
Many of your loved ones and friends will see you looking relatively fit and healthy and over a period of time will come to overlook the fact that you have Leukaemia and will wonder why you can't keep up with normal activities. This is something i have been experiencing for a number of years and continue to do so and i can hear the words from the support nurse echoing back to me, from 2005 saying:- "you will feel very tired all the time" of course that went over my head then...!
As you get older the symptoms increase and another drawback is weight control, if you are prone to being overweight then you will have to watch what you eat as Imatinib will increase your body weight, they used to weigh me at the beginning and take my blood pressure but now they don't bother, unfortunately i'm prone to putting on weight and am now overweight, i used to be able to go to a ladies keep fit but now cannot do that.
You will find that the Consultant that monitors your Leukaemia and see's you for your check up's are not that interested in you as a person just the results that the Imatinib is having on your body, they are over worked and too busy to take on board anything that dosen't pertain to your diagnosis and the effect the Imatinib is having on you, so remember that when speaking to them and take any other health issue to your GP.
I still have to have my blood taken 3 weeks before my check up as it takes that long to get the results back from the PCR Test and my check ups are still 3 monthly and i get my next 3 months prescription then with the results from the PCR Test(checks the level of the disease) and the normal blood test(results come back quicker from this one).I used to have the bone marrow test, Thankfully i don't have that now...!!!
One thing you will notice is that your body temperature will be up the creek, as at the beginning you will be hot most of the time and have night sweats and won't be able to wear those winter jumpers that you used to wear and as you progress this will get better but you will still feel hot and have the occasional night sweat and will need to layer your clothing in the winter so that you can remove the extra layers when you start to feel that heat build up.
I have found that eating 4 squares of dark chocolate a day will help keep your iron levels up and eating lot's of fruit and drinking plenty of water also helps improve your health and helps the Imatinib work better, remember not to eat Grapefruit or Drink Cranberry Juice...and don't take the Imatinib after eating citrus fruits as you will sick it up...!!!
As we are in those winter months for those of you who like to drink hot chocolate...buy a 200g bar of Bournville Chocolate and melt 4 squares of chocolate in a saucepan with milk(standard mug size) and whisk gently until it comes up to the boil and pour into a mug and drink...BEST HOT CHOC EVER!!! You won't need sugar as this choc is already sweetened for those who don't like it sweet buy unsweetened dark chocolate.
For any of you finding it difficult to keep working you can claim long term sickness benefit, mind you it is not easy getting it but then with the times we are in nothing is, here is the link:-
https://www.gov.uk/financial-help-disabled/disability-and-sickness-benefits