I hope you're well. I have posted a few times already on this forum as a new patient (diagnosed April 28th of this year) but things have not gone exactly as planned when I first posted my story.
Quick background, they picked up my CML incidentally through blood tests due to an unrelated illness over Christmas. My white blood cells at their highest have been 30 and in my last two blood tests they've been low (within normal range, under 11). I unfortunately don't know my BCR-ABL or PCR numbers because I haven't really even gotten going with treatment. Because my numbers were so low and they clearly picked this up randomly I was able to spend 4 months going through IVF cycles to freeze some embryos so that I can try to have a child once I achieve MMR and can come off the medication for a time. Pesky timing this whole CML thing!
I also had issues with a very negligent haematologist who basically wouldn't answer my phone calls or give me follow up appointments, so I have just been sitting for 2.5 months since finishing IVF not starting treatment and wondering what comes next. I obviously got fed up with that and have thankfully transferred to another hospital and haematologist which isn't easy but I figure best to do it now than later down the track given this isn't short term treatment.
Long story short, I met my new doctor last week with the aim of me starting 100mg of Dasatinib in 2 weeks time. Now, I have to ask the obvious question here...
Given I've now seen two haematologists and they have both commented how every other patient they have comes in with WBC over 200 or 300 and they need to be treated immediately, and I have been able to just be cruising around for the past 7 months without great concern. My bloods are all still in low risk / low ranges so I don't know why I need to start on 100mg of Dasatinib and not 70mg or 50mg. I know I should be asking my doctor this, and I will in a few weeks, but I sense this general resistance to deviate from the norm unless I push it and I am curious for the thoughts of the forum?
Also, no surprise to you all, I am reeeeeeeeeeeeeally dreading starting this treatment and terrified of the side effects. I am currently 38 years old, I go to the gym every day and train pretty intensely, I eat healthfully and am probably the fittest person I know. I also have a fast paced, intense job that requires a substantial amount of energy so the thought of going from my life now where I feel completely fine, have no symptoms and wouldn't know I had any problems at all, to a world where I need to take a pill that is likely to make me sick, tired and unable to do what I do now is terrifying and depressing. I know I should be thinking longer term and be thankful for the drug as something that will let me live! And of course that is true but I don't feel that currently given where I am at in this journey. It's hard to adjust mentally to this, and I suppose I am still resisting and thinking maybe there's a quick way out or a workaround which I know there is not.
Apologies for the long post but keen for your thoughts everyone. This forum has been a godsend for me so it's really useful to hear thoughts and experiences of others with CML rather than just doctors who have no skin in the game. Should I be pushing to start on 50mg given all of the above, or do I just go with the flow, start on 100mg and hope that with low numbers I might reach MMR quickly and have a successful outcome so I can aim for treatment free remission?
Also, I don't mean to upset anyone who has not had such an easy way in with CML. I know most people have it much worse than I do right now so I don't mean to complain! I just feel like a bit of an outlier from what I am reading and wondering if that means the standard treatment path might not be the only way forward.
PS - As a sneaky aside to this terribly long post, I am also really interested in feedback from anyone on Dasatinib who leads an active lifestyle and trains regularly. How does it impact you? I would be over the moon to find someone who trains hard and regularly on Dasatinib and doesn't have issues.