Hi there,
Sorry to hear of his diagnosis. You’ve probably scoured this forum and read many posts by new CML diagnosis to date so without repeating myself too much I’ll just say your husband is responding well.
He had a very high white cell count mine was considered very high at 330, I had a spleen the size of a rugby ball too (that took about 6 weeks to return to normal)
Some of us started on hydrea to bring the white cell count down before commencing TKI. It sounds like your husband was lucky to start straight on TKI. It took me about 3 weeks to fall to exactly 14.2 myself so that’s a coincidence. The alipuronol he will only take for the 1st month this drug helps prevent gout (cause by uric acid) buildup. This is normal protocol.
It took about 1 month for all panels to be really good.
It’s good that he’s panels are looking more like they should and this will be considered a complete haematological response when they are all within range. (This being the easiest of all milestones to reach and is pretty much a given on TKI)
He would have had a baseline PCR test to measure his level of BCR-ABL at around diagnosis this can range from 10 - 300%. This number is insignificant what is significant is that after 3 months of TKI therapy is that it drops to <10% (or there abouts). The trend of drops is the most significant rather than reaching any given milestone. For example if his baseline was 100% and he fell to 90% that would be a bad response but if he started at 100% and fell to 15% (not quite 10% but almost) this is the real first goal and evidence TKIs are working.
It is a very nerve wracking time in the early days and your mind if you let it will tell you all sorts of grim things. Ignore them, 95% of people respond to TKI and live a full and “normal” life.
I won’t overload you with too much info but the responses in short are
Complete Haematological Response (which he is on target for)
<10% BCR at 3 months
< 1% BCR at 6 -12 months (once here CML is beaten) called a complete cytogenic response meaning the bone marrow is back in action amd is the most important milestone.
<=0.1% BCR at 12 - anytime MMR major molecular response. This took me 30months to achieve so don’t get too hung up on the time points although your doc might lol (this is the one the docs will aim for and just means that response has been great and one day if you fall lower in response MMR4 and below one day he may be able to give up treatment) however only 50% achieve this so it’s likely he’ll be on meds for life.
It’s hard not to panic as it has the dreaded C word attached to it. Lucky for him it’s the C that he can live with for the remainder of his life with daily popping of a pill which will more than likely be a normal one. Everything is going to be fine. You won’t believe it for sometime but you both will. Hang in there.
Alex