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Seeking advice: Should I be pushing my doctor to start me on 50mg Dasatinib instead of 100mg if this is early detection?

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Hi All,

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.

Thanks all!

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. 

Hi! I also spoke to my doctor about starting on 50mg instead of 100mg. I start my first 100mg dosage this evening. I am 43, active, have two kids and have a very busy job. When I talked with him (he has written several responses to the journal articles that were published about 50mg) he said that with my WBC of 200/300 and the size of my spleen that starting with 100mg is best to bring down my numbers fast. He commented that several of the studies have sizes of 100 patients or less. I am an academic and I read a ton of studies. At this point, I have to trust what he is doing. From our discussion, he told me that most likely I will not be on the 100mg for long, and we will eventually move down to 50mg. I will also say that he told me has had many patients who have no side effects at all! I am trying to stay positive and figure like everyone else here, all medications have side effects, but not all of us will experience the same side effects. Stay positive! Lots of good advice and people here!

Thanks so much for these articles, very useful!

Hi Colleen, 

Thanks so much for your response, it’s really comforting to hear about a scenario similar to your own in terms of age, lifestyle and approach. Being an academic you must have had a well informed conversation with your doctor then. I feel like the second you mention you have read some journals you get the eye roll, but it’s a good point that the trials haven’t been going for that long or with that many patients. Either way I will be like you and ultimately go with whatever my doc says but I’ll try the conversation again because just having a view to drop down to 50mg when things get better would be enough for me. My first doctor basically implied it would be 100mg for life with no plans to try and scale down or come off it. 

Good luck with your treatment! This is a big week for you then so I wish you the best. I hope so much that neither of us have notable side effects. If you feel comfortable I would love to hear how you go. 

Hi Lavinia,

I am on day 3 now ( I take it at night) and no notable side effects. My skin had gotten drier from the Hydroxyurea that they put me on first for 3 weeks, so that it mostly what I have been dealing with. I've had a little bit of gastrointestinal issues but nothing like some others have experienced. I take it at night with food. I hope your conversation goes well with your doctor! Colleen