Hi All,
I've been looking over this forum for a while now and thought it's now time to join in. There is some great advice and a wealth of knowledge on here so thanks to all.
Just a brief background about me.
I was diagnosed with CML in 2017 after feeling tired and having a quick stabbing pain in my spleen. The service from my GP and Durham University Hospital was amazing ... GP appointment at 9am - blood test at 9:30am - call from GP at 11:30am - Hospital appointment at 1:30pm - diagnosed and started Imatinib - at 4pm all done in one day
After being on Imatinib for 4 years I have now just changed to Nilotonib around 8 weeks ago. The main reason for the change was cramps! These became apparent around 6 months in but they were not too bad at first but as time and years went by they became intolerable. Durning the last six months I would get server cramps around 40-50 times a day, it seemed that every time I moved I had cramp. I would get cramps in my calfs, thighs and my lateral muscles in my back. The worst was in the back of my neck "nape" as it seemed impossible to even attempt to stretch it out. During one vomiting event I also had cramp in my tongue which caused it to contort and retract into my throat causing me to choke whilst still vomiting! I tried everything from 6 bananas a day, 6 litres of tonic water and even managed to get the GP to prescribe quinine tablets but nothing worked. In the end I told the hospital I would rather have the CML than the cramps.
Other issues that became apparent with the imatinib was my phosphate and vitamin D hit rock bottom that has now led to Peripheral neuropathy in my lower right leg. Im glad to say my Phosphate and Vitamin D levels are back up now.
Anyway after 8 weeks of Nilotonib all seems well. Ive had my heart checked and I'm now on blood pressure tablets due to the associated risk from these tablets. I'm pleased to say that my cramps have almost completely gone with me now only having around 2-3 per week and these are very short lasting and very easy to stretch out so, finger crossed.
I've also been reading on here about the Vitamin D supplements so have just ordered some of those via one of the links provided.
Thanks to all for the info already on here, and I look forward reading more.
Andrew