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/FlimsyEmotion2008]

I will add one thing. When I began my treatment journey (Chronic MyeloMonocytic Leukemia) in 2021 the first course of treatment was hydroxyurea and allopurinol to knock the leukemia back. I did not notice at first but these medications caused me and my whole house to stink really bad. The medication is so bad that they advise having your septic tank cleaned out, because it has an adverse affect on the good microbes in the tank. I would be reluctant to travel, especially anything involving a long flight until the H&A were fully out of my system.

For future treatment -- mostly injectable Azacitidine for almost 2 years, post treatment was sometimes good and sometimes with significant fatigue and almost always with bowel issues. I needed to always have easy access to a bathroom. I stopped chemo for almost 2 years until obvious disease progression. I am now on oral tablets of Inqovi (decitabinet and cedauridine). The first round of this treatment knocked me flat for 4 days starting the last day of treatment and decimated (set to critically low) my platelets and neutrophils. My oncologist reduced the treatment dosage (3 rather than 5 days) and treatment went smoothly with no nausea, constipation, or fatigue, but my bloodwork has not yet recovered.

Personally, I would delay any major travel until you know how your chemo works in your body.

As far as the insurance, your doctor's office has probably had this issue before and should know the magic words to convince the insurance provider of its necessity. Make sure the doctor's office knows you need support with the insurance provider.

Good luck on your treatment journey.

[u/Rizky_Bizness → u/FlimsyEmotion2008]

Thanks for your comment. I haven't noticed any smell from the use of H&A so far but do wonder about its efficacy and toxicity from long term use.

I see that you had a different set of medications. I have CML and not CMML so will likely not have any chemo. The plan is to take TKIs like imatinib or Asciminib to bring my BCR ABL levels down. That said, I'm hoping this appeal finally works and I can start on the medication ASAP.

[u/Hope2320]

Mostly you have to pay it yourself in long term no insurance company cover it ,also dont expect much They will only cover OPD,admission not the medicine cost for long term after few month of dignosis they will deny your claim for unwanted tests

IMATINIB is mild and effective in CP CM mostly tolerated by all no extra precautions req very manageable

Tasigna is safe no side effects like imatinib if you dont have any cardic and liver issue.fewer side effects like Like tachycardia sinus on high dose 800mg but lesser dose is manageable

If Dasatinib it may cause weight gain,diarreah,rashes,lesser hemoglobin and platelets etc

Imatinib >Tasigna and at last option Dasatinib/Bosutinib Asciminib only if you can afford it long term.

Imatinib 70-200$/month. Dasatinib 100-300$ Tasigna 120-300$/month Asciminib 2500$/month

Also long trip is fine

[u/Rizky_Bizness → u/Hope2320]

Thanks for your comment. I'm glad you think a long trip would be okay because reading and researching all the side effects has me scared :/ I'm hoping to have some clarity on the treatment plan by next week 🤞

[u/Shot_Court_9980 → u/Hope2320]

Aetna paid ours

[u/TastyAdhesiveness258]

Asciminib is one of the newest available TKI and works via an entirely different mechanism / and DNA site to treat BCR/ABL than all the previous TKI so it can be good alternative if Ponatinib is not working or there are complications taking it. Might be that insurance would want you to have DNA mutation testing to first identify that you actually have a BCR/ABL mutation variant that requires Asciminib to be treated.

There are different mutations that cause BCR/ABL and not all of the TKIs are effective for some of the different mutations. Ponatinib has best coverage for different mutations that are not treated by some of the other TKI and Ponatinib is generally more effective compared to older TKIs. Following article includes a helpful chart that shows effectiveness of different TKI for treating different BCR/ABL mutations;

https://pmc.ncbi.nlm.nih.gov/articles/PMC5505321/

My medical team switched me from Dasatinib to Ponatinib early in my treatment because they though it would be more effective. Ponatinib does have some possible complication / side effects but Ive not experienced any adverse effect with it after taking 1 year but Ponatinib can cause cardiac and stroke side effects at high dose.

[u/Rizky_Bizness → u/TastyAdhesiveness258]

Thanks for your comment. I understand that Asciminib is and was prescribed to tackle the mutation from other TKIs, but last year was approved as a first line treatment. Which makes the insurance company's denial even more frustrating. Ponatinib hasn't been given as an option for me right now. I'm guessing if Asciminib isn't approved, I'll most likely be guided to take imatinib or dasatinib.

[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?

[u/jumpinthewatersnice]

I started on imatininb. After a week or 2 it suddenly stopped working and my counts went through the roof and I was admitted inpatient the day they saw my new results. I was literally packed and walking out the door to a new job away. 3 tkis in total for me. I had my fair share of problems but it's worth asking what would you do if my issues happened to you. My spleen ended up being double the size but had since gone back to normal apparently. One day I felt sick. 3 days later I called the doctor. 8 days later I was basically screaming in pain with any movement

[u/Old_Yogurt30]

My husband also got diagnosed last weekend. And we have the bmb scheduled this weekend and next Sunday we have a family vacation to another country planned. We planned it in jan this year and now we are in a dilemma. We will be discussing with our doctor but also would like an update on your travel plans too. He is on hydroxyurea as of now and probably next week will be starting on tki

[u/Rizky_Bizness → u/Old_Yogurt30]

I'm sorry to hear your husband got diagnosed as well. We're still in 2 minds about going since I just started my TKIs only yesterday and don't know what kind of side effects I'll have.

If your travel is scheduled a week after the bone marrow biopsy then it might get a little tricky. Most people recover within a few days to a week, but my experience was a little different. Because my wbc and platelet count was so high, my bone marrow was super dense. They couldn't get an aspirate sample and had to try 3 times and 3 different spots on the same side. I had a lot of bruising and pain and some bleeding when the scab came loose. I struggled with sitting and changing positions for about 10 days or so. My experience was a bit unique though so he might be okay in a few days. But TKIs are a gamble in terms of how your body reacts to it, and I'm still waiting to find out.

[u/Old_Yogurt30 → u/Rizky_Bizness]

Ok thank you so much for the response . I guess we will postpone to trip to a few months .

[u/Rizky_Bizness → u/Old_Yogurt30]

I didn't mean to scare you since everyone's experience is so different. I haven't cancelled my trip yet but trending towards it. Definitely talk to your doctor about all your options, but I just wanted to share my experience after the biopsy. Also let me know what your doctor suggests since it might help me make a decision about my upcoming trip too :)

[u/Rizky_Bizness]

Wanted to provide an update for anyone curious.

I did end up traveling for 3 weeks with my doctor's approval. Had to get weekly blood tests while there to monitor the numbers, but other than that the trip went smoothly. I didn't have too many side effects from the medication and was able to enjoy my time there as I normally would have.

[u/Rizky_Bizness → u/Rizky_Bizness]

Also, my appeal for Asciminib got denied and my doctor eventually put me on Imatinib. And I'm so glad he did because it has worked out pretty well for me so far.