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CML Journey: Week 8 - WOW!!!! You weren't kidding!!!

So I'm now 8 weeks in on my CML journey, so wanted to check in, and this time it's good news...

Having been on the Dasatinib now for three weeks, what so many of you were saying turns out to have been true for me too! (I always like to think I'll be the exception!)  The awful headaches are now gone, the only traces of which are now a faint feeling of being a little heavy-headed/sleepy/"not quite as sharp as I used to be".  It's only slightly noticeable now, and something I could definitely live with, as I suspect I must...

I commented to my partner yesterday that I was actually feeling a bit more energetic now than I've felt in months too, and after saying that, the MacMillan nurse rang me with the numbers from my latest blood test...  To give you some perspective, I'm going to share my historic results too:

White Blood Cell count:

  • 24 Sept (when my GP first became concerned:77
  • 6 Oct:   90
  • 12 Oct:  (now on the hydroxycarbamide:)  84
  • 26 Oct:  84
  • 2 Nov:  70
  • 9 Nov:  (now switched to dasatinib:)  75

So yesterday, she said I'm now down to 23!

She sounded pretty enthusiastic, and I must say, that looks pretty good to me too!  I told her what I said about feeling more energetic, but that I was thinking this could just be in my head, and she said, "no... that's the blood getting better - your body's been through a lot!"

What do you guys think?  Is this as good news as it looks?

Hello! I just wanted to say congrats and it was really comforting to hear your story after 10 weeks on Dasatinib. I am about to start in a few weeks and am scared obviously of the side effects. As you probably were 10 weeks before you started, it’s so nice to hear that what’s on the other side is manageable and maybe not that bad. Happy days! Good luck and keep on keeping on 👊🏻👍🏻

Great news! Yes you’ll have a complete Haematological response within weeks which you are headed towards. Then the next goal is <10% BCR-ABL within 3 months. Then ideally CCYR by 6-12 months which by proxy is PCR BCR-ABL <1% (when you hit this you’ve pretty much beaten CML and can start to relax). Then the only other milestone is MMR <0.1% (mentally this is when Ive started to relax)... MMR is for those one day wanting to do TFR. If you stayed at <1% forever you’d have the same life expectancy as those in MMR. Obviously the deeper the response the better but have your eyes set on CCYR then anything else is a bonus. And if you don’t hit MMR by 12, 18 or 24 months don’t be bullied in switching unless you have increases in BCR. I think a lot of consultants prematurely switch. Luckily mine didn’t and I’ve finally hit MMR 0.072 at 31 months. You’ll want to keep as many TKI in your back pocket as you can so to speak.

All the best

Al

Congrats Alex on reaching MMR!

Its very good that your WBC is getting back towards normal. Are they doing a FISH test to see what proportion of your cells have the changed gene? That's another method in the early days of tracking progress, but when you get below 1% it is not useful and they will use BCR-ABL.

Thank you Sally sorry I just saw your reply.

Alex

Yes, congrats Alex thats fantastic news. 

Thank you Patch! ☺️

Yes the headaches I’m getting I just in my 3 weeks starting my 1st day felt so bad IIke if I had the flu. Then I started getting better days just now I’m getting headaches and my bones are getting tense. So I was so scared of just hearing the word Leukemia knowing  I had this in my body. Just reading and being on here gives me hope and well every one hope that has this. My blood counts were at 300 when I first found out just hope they leveling out 

 

best wishes to u zz