Highest Rated Comments

hand_me_a_shovel158 karma

You mention drinking meds for the rest of your life. Are you taking one of the TKI (imatinib, ponatinib, etc) or is this abrefeeence to something else?

hand_me_a_shovel149 karma

I was diagnosed with CML in 2015. I was started on Gleevec as well but unfortunately mine accelerated into blast phase by 2017 and I went through bone marrow stem cell transplant therapy.

FWIW it helped me to think of it like taking diabetes medication. In that diabetes, though also serious when untreated, didn’t have the same psychological effect as cancer. So I tried to just frame it as “those pills I take each day”.

Your age is an excellent factor for you as well.

How symptomatic are you at this point? Aside from pandemic restrictions, are you able to function at normal efficiency?

hand_me_a_shovel65 karma

The procedure itself was rough. I was also specifically put on an experimental high dose chemo regimen at the beginning of transplant. Nuking the site from orbit as it were. I was in hospital for about a month. I was not working for around a year.

The biggest adjustment has been making sure to reduce UV exposure as much as possible to prevent GVHD (graft vs host disorder) where my new cells attack my body because of the damage from UV radiation.

Otherwise I feel like I’ve bounced back pretty well. I bruise a hell of a lot easier now though, which I attribute to damage from the IV chemo I was in during my hospital stay.

hand_me_a_shovel41 karma

No clue. I had not been experiencing any significant negative side effects from the imatinib therapy and been going about my normal work/life routine for over a year (roughly?).

Then during a scheduled bone marrow biopsy they had a dry pull, meaning the bone marrow itself was deteriorating to a fibrous structure. The doctor did three pulls that day, two from left and right rear pelvic bone (I could google the correct name but... you know if you've gotten one) and then one in the sternum (because of the dry taps on the other two). He was desperate to get something he could get to a lab. I was in MD Anderson Cancer Center within a month and told I was in blast phase and rushing toward transplant. This was all in the span of about 3 months.

I'm sure your docs have told you this is caused by the BCR-ABL mutation. Somehow, at some point, my body just decided that normal was not the way. :)

And I suppose it is reasonable to consider the fact that I may have had CML for some time prior to my diagnoses. Still, my physicians were all taken by surprise as well.

hand_me_a_shovel18 karma

Yeah... 0/10 would not recommend. :)

Edit: Though, to be fair, given the alternatives... :)