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Recent update and encouragements

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Hi all,

I’ve had my most recent PCR 5.5 years and finally 0.01 (MR4) on the dot which I am really happy about. I’ve hovered at this level for about a year so defo turtle mode but happy that I am stable. Turtles finish races too haha.😜

On another note I thought it was important to address mental health especially being a guy (as we don’t often express ourselves) and very rarely admit when stuffs not right, and true also for the ladies. Mental health is still such a taboo but it does seem to be improving or at least on the surface it’s more widely recognised which is encouraging.

I’ve suffered with GAD (generalised anxiety disorder) for most of my life undiagnosed and although I can’t prove it I believe it’s attributed to my CML. I’ve been through some pretty consistent traumas and worry’s over the years (like a lot of us have) We all know stress is a killer and what it can do to the body so it’s my own theory which is partly backed up by many articles I’ve read on stress and cancer.

I had decided to address it and got an official diagnosis of General Anxiety Disorder & Depression from the doctor which was one of the hardest things to admit but one of the easiest calls with a doctor I’ve had (the depression diagnosis had suprised me somewhat) however now that I am not depressed I can see that I certainly was for many years. I used to attribute my constant and debilitating fatigue to TKI well now I know after 3 months that it wasn’t but it was mental distress.

I have been prescribed Sertraline 50mg (which is ok with Nilotinib) which I have been on for 9 weeks and it’s the best I’ve felt since being a teenager (now 43) in fact I don’t think I’ve ever felt this good.

I figured I already have to take meds so what’s one extra pill that’s going to greatly improve my life. I’ll also be having CBT in the coming months which is only going to help the situation further.

The point of airing this is to show that it’s ok to not be ok, CML as well as general life worries we all have does and will take its toll if you’re not vigilant. My energy is the best it’s ever been I won’t lie though the road has been a bit bumpy while the meds stabilise and when I have a good day wow they really are good days so don’t deprive yourself of being functional, much happier and stress free (less anxious) and seek the help you need.

Not everyone who’s diagnosed will suffer the same but more emphasis must be put on the mental turmoil of a CML diagnosis as much if not more than the physical aspect of it.

I hope that encourages others to get help if they’re feeling the strain, it isn’t a weakness to admit it but a weakness not to admit that you might need the help too. If not medication then a combination of that with some talking therapy.

All the best

Al

Al,
I was happy to read your positive news. Congrats on getting 0.01 and on finding an effective treatment for your anxiety and depression.
I too have suffered from depression for most of my life. I'm currently on Wellbutrin (OK with Imatinib) which makes a huge difference and maybe has saved my life.
I think its important to share these struggles and triumphs as stigma around mental health hurts everyone, so thank you for sharing.
Really, so great to hear you're doing well.
Winnie

Thank you Al for a really important post. Congratulations on being so strong and taking care of yourself so well.

It is unsettling sometimes to have CML, though I must say, 6+years on I’m getting more comfortable with it. As my first hematologist said, “You will die of something, someday, but you won’t die of CML.” So we need to focus on taking care of other parts of our bodies and minds, especially as we get older.

It’s also a scary world out there and I’m sure it affects us even if it doesn’t impact us directly. War and terrorism take their toll on everyone. All the more reason to pay attention to our mental health.

It all makes me want to try harder always to be kind.

BTW, I just had my second negative BCR ABL test result! Hooray! First one ever was last April. (I’m a turtle too, Al.) Maybe a coincidence, but I switched from 400 mg Imatinib to 50 mg Dasatinib in May 2022. Hopeful for TFR in a year??

Take good care.

J.

Alex, great post. I remember when you first appeared and you were always a terrific writer and showed such truly helpful empathy and insight for others' distress. You've been a big help to people, so I guess you're just going to have to accept being a Sensitive Guy. I seem to not have access to emojis on this machine, so shall I just say LOL?

I am very, very glad you are getting a benefit from the Sertraline and therapy. We only have one life and it's no good wasting any of it being unnecessarily unhappy. My official diagnosis when I was in therapy was also GAD. I think depression was in there, too, but I didn't want to try meds at that point. The depression that I truly did have on Gleevec had decreased noticeably on switching to Sprycel by the time I started therapy. I applaud you for addressing the whole mental health thing - there isn't one of us, I suspect, that hasn't wrestled with the devil on getting CML, especially if it reveals maybe a lifetime of struggling with a low simmering issue.

I just got what is, for me, a "bad" PCR this week. After 14 years of safe numbers and five years of double zeroes to the right, out of the blue in July I got a 0.009. I spent the next 3 months in a foul, contrary mood - cynical, depressed, anhedonic (LOVE that word) - I just thought it was world events. But I realized, after I fell apart today, having received a 0.016, that I must have been under that special cloud we're all familiar with, all along since July. Mental health is a HUGE component of the CML picture. So, good on you for your post. My reaction today makes me wonder about all that therapy - did I actually really get on top of anything and make any progress? Maybe I should do the meds. Anyway, you got me thinking. I have been complacent with my status quo. It was shocking to feel EXACTLY the same feelings I had when I was diagnosed. Is it really so easy to be crumbled back to square one?

I dread all the falderol that's coming - lots of waiting and retesting, trying other meds, new side effects, yadda yadda. Maybe it won't be like this. My therapist used to say, "Most times, things turn out all right." $200 for THIS?!?! More LOL.

Alex - Glad to hear that you reached 0.01. As you know it helps a lot with the mental aspect for sure. I too had a lot of stress whenever something seemed off. Always thinking CML was progressing. I have since learned to be at peace and am grateful for everything. Being in turtle mode doesn't help with the stress but anything below 0.1 is all the same as far as overall survival.

Hoping your feeling much better and less stressed with your new approach.

Alex - Glad to hear that you reached 0.01. As you know it helps a lot with the mental aspect for sure. I too had a lot of stress whenever something seemed off. Always thinking CML was progressing. I have since learned to be at peace and am grateful for everything. Being in turtle mode doesn't help with the stress but anything below 0.1 is all the same as far as overall survival.

Hoping your feeling much better and less stressed with your new approach.