Can I share my story with you all please.
Diagnosed Nov 2017 aged 53. Had a blood test due to feeling generally under the weather for a few months, blood test on a Friday afternoon, had a call from my gp that same evening asking me to make my way to hospital ASAP as further tests were needed. When I got to hospital in a complete state of panic I was told I had cml. After a week in hospital and a bone marrow biopsy it was confirmed that I had ph+ cml with bcr of 50%.
Started on nilotinib in December which seemed to be working well at reducing my bcr score until it was also reducing my platelet count too low so I stopped nilotinib for three weeks and then tried again but still the same problem, even a dose reduction did not help.
My oncologist then started me on Bosutinib in June 2018, but only 100mg per day. She also wanted to get a back up plan in place just in case I could not tolerate bosutinib, this plan was to refer me to our nearest bone marrow transplant hospital to ‘get me in the system’ in case I needed a transplant.
The bosutinib dose seemed to be ok, gradually bringing my bcr slowly Down to 5% by November 2018 and was kinder to my platelet count which I was very pleased about. But I had to stop the bosutinib for a week in December 2018 because the alt levels in my liver were raised. Back on bosutinib the same problem happened and my bcr score had increased to 10%. Dr has now put me on a course of steroids to take alongside the bosutinib to help my liver and also gradually increase the bosutinib dose, I am currently taking 200mg for the next seven days and back to weekly blood tests and phone appointments.
Had another appointment with the transplant hospital yesterday and was told that a perfect match had not been found for me yet and it would be too risky to go ahead with a transplant if the match is not perfect. He said the best thing would be for me to be able to tolerate the bosutinib without the side effects.
Apparently I respond well to the tki but my body is not good at regenerating the healthy bone marrow.
Because of all this I am currently finding it very difficult to find anything positive to cling on to and would appreciate it if anyone has had similar issues and they could give me any advice or words of comfort.
I have had a quick skim through some of the posts here and one thing that jumped out at me is vitamin D3. As far as I am aware I have not been tested for the level in my blood. Should I start taking the supplement? If so, how much? Or should I speak to my oncologist first?
As everyone says I have now reluctantly become a member of this club.