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Living with CML

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Hi all,

I joined this forum a couple of years ago and was diagnosed with CML in 2017. Since then I have had additional issues to contend with including being diagnosed with PPMS, "Primary progressive multiple sclerosis". I've always been a positive-minded person who just gets on with things the best way I can.
A while ago I decided to make a YT channel (@himherandthedogs) showing you can still do what you want to do even with the odds against you.
I bought a camper van and enjoy days out and weekends with my wife and our four dogs...yes four dogs!
I created the channel to hopefully inspire others to live their best life.

My recent video is me talking openly and candidly about my CML and how I was first diagnosed, my medication and side effects and living with CML in general.

https://youtu.be/x0dDXxyivk4?si=ZltS0-_R8hNUfCGd

Hi fatty fish,

Just watched your video, excellent, very open thoughts, described to a t, excellent contribution from bracken!, and like me, I noticed your on 800mg Nilotinib, and like me not to meticulous about the taking, and timing of the drug, look forward to the next instalment, good luck in the future.

Peter.

Hi Peter,

I'm glad you managed to take a look at the video and thank you for your thoughts and comments. I created the YT channel to hopefully give people a better understanding of how living with health conditions affects people in different ways. I have PPMS which affects my mobility, but while I can I intend to carry on and do what I can when I can.
Bracken always makes an appearance in our videos as he and our other dogs are such a good comfort and actually force you to keep going...
I have plans to create other videos soon talking openly about my PPMS and my Cervical Stenosis.

Thanks, Andrew

Hi, Fatty Fish! I enjoyed your video - you are quite the natural, whatever the interruption you can get right back to your story! Bracken is a sweetheart!

I was diagnosed in 2008. I started on imatinib - very familiar with the cramps but mine were never as bad as yours. After 8 months my liver took extreme exception to the drug and I was switched to dasatinib. After a couple of years, I developed a pleural effusion. When that settled my dosage was cut in half to 50mg. I did great on that reaching MMR and eventually CMR then after another 6 years I developed another pleural effusion. I tried lowering my dose and finally had to have a PleurX catheter inserted so I could drain the fluid at home. 18 months later I gave it up and switched to 150mg nilotinib twice a day and then 150mg once a day. I have been in complete molecular response for 3 years and this week I stopped nilotinib to try TFR (treatment-free remission).

You never mentioned how well the nilotinib is working for you. I mention this because you are on a very high dose and I wonder if some of your side effects would lessen or disappear on a lower dose. The newest research has the starting dose for newly diagnosed patients at 600mg. Depending on where you are with your PCR you might be able to take an even lower dose. As my doctor keeps reminding me, these drugs all have the potential for serious vascular and cardiac side effects, and if I can take a lower dose and maintain effectiveness that's a good thing. It's omething to think about and discuss with your doc if it interests you.

Right now, I'm going to watch some of your other videos. Good luck!

Pat

Pat, wishing you the best of luck on your TFR attempt. Please keep us informed on your progress.

Buzz

Hi Pat,

I'm glad you enjoyed the CML video and the others, hopefully.
I'm due to have my blood tested again soon for the CML. Currently, my white blood cell count is still just above the normal range, around 11.2 but still better than the 253.4 when I was diagnosed in 2017. As far as how I am feeling...from the CML side of things I feel quite good. My cramps are now few and far between, and when I do get cramps it is a lot easier to stretch out and only lasts a minute or so.
Obviously, I also have Primary Progressive Multiple Sclerosis and Cervical Spondylosis, so to be honest my CML has taken a bit of a back seat when it comes to daily living. But I always stay as positive as possible and when I have good days when my mobility is better I make the most of it and do whatever I want. When I have bad days I don't dwell on them, I just do what I can.

We started our YouTube channel to hopefully inspire others and to hopefully have a laugh along the way.
"I'm not dead until I'm dead"

wishing you well
Andrew

Thanks, Buzz! As you know, my CML raised its ugly head fairly quickly whenever I had to stop due to pleural effusion on Sprycel. I can't say I'm particularly hopeful, but I will never know if I don't try. Luckily, I respond well to treatment if I need to return to TKIs.

Pat

Hi Fatty Fish, I just watched your video. PPMS on top of CML - I can hardly believe how unlucky you’ve been. Especially with such extreme cramping, I don’t know if I could have stuck through that as long as you did!

I was wondering if you’d ever got your leukaemia cell count down low enough to try a treatment break, or have you been on TKIs continuously all this time?

I came across this research paper the other day about some rare cases of TKIs causing demyelination, which stopped when the med was withdrawn, I thought of it as soon as I read your post. I’m sure your consultants have already considered that, just though I would share in case it’s useful, sorry if it’s totally off base: https://www.practiceupdate.com/content/cns-demyelination-after-initiatin...

(I can’t find the full version sorry, but the abstract gives the gist of it)

Your dog is gorgeous btw!

(Duplicate post)