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Fatigue and the future

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Hi all,

I was diagnosed with CML just over a month ago. I was put onto imatinib 400mg straight away, and I had an initial dip in white blood cells and platelets and they've now gone to normal levels (which I'm told is good news!) But I do have a lot of side effects, nausea, stomach pain and just general stomach unhappiness, bone pain.. but most importantly fatigue. I've taken my hours down to 6 hours a day but it feels like I'm working twice that. Does anyone have experience with this, does it get easier? Are there ways to get more energy?. I've had my pay cut so I can't work any less hours. I'm also scared about what it means for my career, I'm 31 but I'm pretty much at the bottom of the ladder, and I work in science and don't get paid much already. I was hoping to do a PhD next year alongside my job, to eventually improve my pay and job prospects (I've been working for 5 yrs+ in the field but hard to move up without a PhD) but that seems crazy now I can't even work half my usual job ...

What does CML look like long term? Should I be trying to adjust more now? are there careers that might use my skills but be more flexible and forgiving? - as with most of science im on a temp contract so I'll need to find a new job in a few months either way. Which is majorly freaking me out as I'll have to start looking and making choices soon.

Any advice really appreciated! :)

Kes, initial side-effects usually begin to moderate after a month, or so, on a TKI.  Other than that  you could try splitting your Imatinib 400mg dosage; taking 200mg in the morning and the other 200mg 12 hours later in the evening.  It should help to lessen the side-effects.  

Wishing you good luck,
Buzz

Hi Buzz,

Thank you for responding. Have you seen that most people go back to their normal energy? Or somewhere in between?

Thank you! Kes

Hi. I covered a lot of this when I talked about my experience of (then) 11 years of Imatinib treatment at the UK patient day in Birmingham in 2018. That video is here . One thing I probably didn't emphasis enough in this talk is getting enough sleep - if I don't get over 7 hours now I'm not at my best.

To complete the story after that meeting I reduced dose to 200mg for a year, and then stopped the pills and remained in remission for a further 17 months. I lost remission, went back on 400mg, regained remission and am now back on 200mg again and undetectable. Dose reduction is something to look at probably in a few years if, as is likely, you respond very well.

One other point; Assuming you are in UK the Equality Act 2010 states that it would be illegal for an employer to take your CML diagnosis into account in deciding whether to offer you a job.

I hope that is useful.

Kes, I would expect that as your CML resolves, leading to a lower TKI dosage, that you will find your energy returning.  Your age should work in your favor.  Please continue to keep us informed of your progress.

Buzz

Good news:  You are not alone.  Bad news:  My onc once told me that every single one of his CML patients on any TKI complained of fatigue.  A little more hopeful news:  Many people have said it gets better (weeks, months, sometimes years) and reducing your dose (at the proper time) helps a lot.  There is also the human ability to get used to things and eventually accept and adapt.  You will probably pick up some pointers that have helped people here, but in my own experience, two things stand out:  it didn't get better on imatinib (all the side effects you have mentioned) and I tried for two years.  No change.  When I switched to dasatinib, everything got much, much better.  Noticeably and fast.  Just a thought to keep in mind if things get unbearable. The second thing I have experienced: I actually get worse fatigue with exercise.  I've tried many different kinds and pace and amount of exercise, with a trainer and without, and it never fails:  I'm exhausted for the rest of the day - completely unable to keep to a meaningful productivity - lie down tired - and usually the next day as well.  It makes me wonder if there is a parallel with the experience of chronic fatigue syndrome patients.  BUT - many people here will tell you exercise has vastly improved their fatigue and lives, so just keep your mind open.  I'm sorry you're having a rough time - we've all been there.  You will find your way, promise.

Hi Kes,

I share your experience of being tired in the early days and this should ease after some time. Managing yourself through work is a challenge but from experience I recommend that you don't scale back on your professional ambition but do allow yourself to accept that you may not be able to operate at the level you once did until your body adjusts. There is also a huge psychological strain on you at the moment and this pressure will add to the tiredness. It is easy for me to say now, but try to manage your thoughts knowing that you will improve. It really is a case of muddling through the best you can until you find a level you are happy with. That may mean working reduced hours or at least managing yourself in your role to help ensure there is no undue stress or taking on projects you simply can't handle at the moment. Having a supportive boss also helps and you decide depending on the circumstances at the time how open you want to be. I was very nervous initially having just taken on a new role like you are planning now, however I found that having explained my illness to my new manager helped us both understand and manage expectations.

Good luck and keep us posted !

 

 

 

Hello

Thank you for sharing this. I was diagnosed with CML in November 2021 and have been taking dasatinib since. My dose has been up and down as my body just isn’t taking to it well. I experienced all the side effects you have and still do but since lowering my dose they’re not as bad as when I was on the highest dose, if it’s possible maybe finding a balance with the dose could be beneficial

I am 28 and have also thought a lot about my future and what it means. I am not able to work full time I am still slowly increasing my hours and have had to put my plans for my career on hold for now. I have been completely honest about how I feel physically and mentally with my work and they have been so accommodating so it’s definitely made managing my illness easier in that way.

I have been told things will get easier and better but it will take time. I will definitely say the first 2 months or so were the worst and scariest but maybe in time you’ll find it will get slightly easier. Overall just listen to your body first and take each day as it comes. Praying that things do get better for you. 

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that the lower dose has improved things. I'm not ready for a lower dose yet as we aren't even sure if this one is working! But once it's more stable that might be a good option. Were you on any other drugs before (like imatinib) I thought usually that was the first one to try.

It's also comforting to hear you're putting your career on hold a bit. I feel kind of guilty for not trying to keep pushing to achieve, but I just don't feel like I have the energy, and my field is something you kind of need to always be pushing or that's that! I was hoping to find something more accepting and gentle that will let me work part time. At least for the next year or two while I adjust to it all.

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that the lower dose has improved things. I'm not ready for a lower dose yet as we aren't even sure if this one is working! But once it's more stable that might be a good option. Were you on any other drugs before (like imatinib) I thought usually that was the first one to try.

It's also comforting to hear you're putting your career on hold a bit. I feel kind of guilty for not trying to keep pushing to achieve, but I just don't feel like I have the energy, and my field is something you kind of need to always be pushing or that's that! I was hoping to find something more accepting and gentle that will let me work part time. At least for the next year or two while I adjust to it all.

It's comforting to know the first month's are the worst, the stress is bad too so I know that's probably part of it. I'm sorry you've been experiencing the side effects too, although it's good that the lower dose has improved things. I'm not ready for a lower dose yet as we aren't even sure if this one is working! But once it's more stable that might be a good option. Were you on any other drugs before (like imatinib) I thought usually that was the first one to try.

It's also comforting to hear you're putting your career on hold a bit. I feel kind of guilty for not trying to keep pushing to achieve, but I just don't feel like I have the energy, and my field is something you kind of need to always be pushing or that's that! I was hoping to find something more accepting and gentle that will let me work part time. At least for the next year or two while I adjust to it all.

Thank you for the advice, it's good that yours has reduced down. I've already reduced my hours as much as I could, but I'm still struggling with the work. I have got a good therapist though which is helping mentally.