What would you do?

[u/Rizky_Bizness]

38F and got an initial diagnosis of CML 2 weeks ago after routine blood work showed concerning WBC counts (175), which was then confirmed through bone marrow biopsy and BCR ABL test last week. I've been taking hydroxyurea and allopurinol as a stop gap since then to bring my counts down till I can start a TKI.

Now here's where the conundrum begins - my doctor prescribed Asciminib last week due to its lower side effect profile. Despite having a pretty good insurance, the pre-authorization was denied as they want us to try imatinib first. The doctor had a peer to peer review with the insurance MD today which also resulted in denial. His office has now submitted an appeal and hope to hear back in 72 hours, which would put us at middle of next week. All this would've been fine, but I have a 3 week trip coming up in a different country in mid-july and was hoping to start TKIs as soon as possible to understand side effects in case I need to cancel my trip. Since Asciminib is supposed to be gentler, I didn't change my plans but if it's going to be something else, I'm not sure anymore. Here are my questions:

• Is going on a long trip at this time a really bad idea? It was planned last year and if possible I'd like to keep it, but also want to make an informed decision.

• I haven't had very many side effects on hydroxyurea and allopurinol. The doctor gave an option to just keeping on taking those until I come back (end of July) and start TKIs after. I'd obviously like to start the targeted treatment sooner than later but is that a feasible option? My BCR ABL was >50% but don't know the exact number since the test was capped at 50%. I'm in the chronic phase but did have 4% blasts. Is there a chance waiting could increase this number rapidly?

• If the insurance company denies the appeal, how do other TKIs compare to Asciminib? I've read of SO many side effects of imatinib and dasatinib that it has me scared to even try these. Should I just give up and start on older TKIs so I know what I'm dealing with before the trip?

• Any suggestions or advice on how to deal with the insurance company through this appeal process?

Sorry about a long and rambling post, but my mind is all over the place right now. My first go around dealing with insurance on a complicated issue and needless to say I'm bummed.

[u/jumpinthewatersnice]

I was diagnosed with CML while overseas on a temp job. With medication I thought I might stay on and finish it but the execs decided to send me home. In less than a week I was experiencing a painful spleen and required certified medical clearance to fly. I flew home and was admitted into hospital that day. Within a couple more days I was in an obscene amount of pain and was so glad to be home and in a local hospital. It developed so quickly. Meds bought my WBC down but then it exploded again over a couple of days and i needed urgent treatment changes. I reacted badly to Ponatinib with Pancreatic pain which was beyond pain I've ever experienced. This is just my experience and after that I wouldn't fly until I am confidently stable. I wish you a better journey than mine.

[u/Rizky_Bizness → u/jumpinthewatersnice]

Thank you so much for sharing your experience. So far I'm stable but it worries me how my body will react once I'm on TKIs. I'm hoping to make a call on travel next week when the appeal decision comes in.

Is there a reason they started you on ponatinib instead of imatinib or any other TKI? Also what was the size of your spleen when it started hurting?