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Curious to know how many of us work full time outside the home. I was working full time at diagnosis 1 year ago and continue to work full time, but it has been very hard because of fatigue. It also seems harder to remember things sometimes, which could be partly due to fatigue, or could be something entirely separate, but this makes work a bit challenging with forgetting meetings etc. It looks to me as if I should cut back my hours and I have a meeting with supervisors on Monday to discuss. Interested to know others' experience. Thank you!

Hi Justine
My husband works full time. He was diagnosed last Sept. He commutes by train an hour each way so has long days as an engineer. He actually fainted once on the train just after diagnosis.Luckily his boss agreed he could work from home Fridays and he has done so ever since. its been a huge help esp as he has conference calls every Thurs eve which can go on till 9 or 10 pm or later. I am not sure he could have managed as well as he has done, without that benefit.

Our family health insurance is tied to his job so it was very scary for us initially, wondering if he would be able to continue to do his job.

The last few days have been challenging for him as he isn't getting enough sleep because of shoulder pain. luckily up until this point he has always had a great night's sleep - he can nap anytime , anywhere and i think that has also helped him as well. He will go to bed sometimes as early as 9 and sleep right through to 7.

Good luck with your discussions at work. I hope they will allow you to make some changes to your schedule.

take care
Louise

Hi Justine, I’ve had CML 10 years now (just turned 50) and I worked full time for the first 5 years but I agree that the fatigue does take its toll and makes holding down a job more challenging! Do you have many other side effects? And what’s your dosage level? I’ve always been on 400mg a day but have dropped myself down to 200mg a day to try and recoup some energy. Have your drs checked your B12 and vit A levels, these are often deficient in CML sufferers? The fatigue is probably always going to be there to some extent and it’s a case of managing and coping isn’t it? I’m now part time and I forget things too and can’t multi task like I used to. I would say that the fatigue will eventually force you to cut back a bit, just so that you can keep healthy. Do check the B12 and vit A out, it could give you a bit more precious energy and good luck with sorting something out, hopefully your colleagues will be able to accommodate and understand. I always tell people it’s like living with the energy levels of a bad cold, every day! Hope this helps

I agree with Shayner. I believe this CML scraped some years
off of my life. After I came out of my initial treatment “Hit” I felt older.
It takes noticeably more determination for me to do what I could accomplish
before my therapy. It’s like I got beat out of my position.
OH Well, I still have a lot of good things that make me happy.
I will continue to take my meds and enjoy my family and friends.

...And I am no longer engaged in the overthrow of the evil world domination
cabal of the aliens and genicidal modified robots that are infecting my brain.

I am a survivor.

Romo

Hi Justine,

I was diagnosed in 1998 (just before the Xmas holidays - thanks for that!) and have been successfully treated (life saved) by TKI therapy plus some years later, stem cell transplant. So I understand the kind of fatigue and memory issues you are talking about.

Of course, before diagnosis my fatigue was due to CML and a very low HGB (around <8) then just after diagnosis the profound fatigue was compounded by, shock as well as the worrying prospect of a full stem cell transplant with all its risks and less than attractive chances of surviving the procedure. I was very close to, if not already in, accelerated phase and this was when imatinib was still in early clinical trials in the US, but not yet in the UK or Europe.

Fast forward one entire decade, plus almost another (!) I still suffer from tiredness, but mainly when I am worried or overworked.... however I have not let that stop me from starting a brand new business 3 years ago this month.

Although that was stressful in itself, I have never regretted that decision and although I 'only' work 4 days a week (it is a niche retail business) I still work the other days in my studio making ceramics.

I have no doubt that emotional stress and delayed shock is an additional cause of the fatigue we are all subject to. I still get exhausted by the whole thing (CML), as well as life in general, but I am not prepared to give up my life to CML. I suffer from insomnia sometimes and I have recently found a good way of dealing with that, but that is for another conversation. 

The pressure of work, especially if you work for someone else or for an organisation that expects full time commitment, can take its toll. Add to this the toll of daily therapy, as well as the ongoing emotional effects of diagnosis - which, for most of us, is never really fully resolved - and it is not surprising we suffer from forgetfulness etc. 

I try to be good to myself, and there is no doubt the encouragement and emotional support I get from my partner is crucial. 

Having said all that, it has taken me a good few years to get to this place in my life, and I still have to remember not to push myself too much. You are not far from your diagnosis so I hope you can find a way to persuade your supervisors to agree to reduce your hours - maybe you can work from home on some days? 

Best wishes,

Sandy

 

Hello.

Yes work took a toll on me as well, so i started working part time. (Half of what i normaly did)

It has helped me a lot, but with all the stomach and nausea problems i have with Glivec its still hard working part time and raising 2 children.

 

Good luck.

Teddy.

Thanks all, very interested to know your experiences with work.

Shayner, I am on 400 mg Imatinib daily, have not reached MMR yet, blood counts are all a little low (WBC hovers around 3, RBC same, platelets have been low since 1 month in), 55 years old, also take Vitamin D 5000 iu/day. At last medical visit I asked oncologist about Vitamin B12 and he said it could not hurt to take some, and may help. I have not bought any B12 yet but will try it. My diet is really good, very balanced with lots of vegetables, lean protein, etc. My biggest challenge is drinking enough water and that might have something to do with it. I just don't like drinking water!

Thank you Sandy for that great information and congrats to you for such a wonderful success story. 

Teddy, that is quite something that you are raising two kids. I feel for you, admire you, and hope you are getting lots of help.

Louise and Romo, I appreciate your situations and while I hope/pray for the best for you and Louise's husband, I must admit it helps me to know that I'm not the only one who struggles with this. Sometimes I feel bad when I hear about people with CML who play professional sports (Brian Boyle) and have babies (Erin Zammet Ruddy) because I can't imagine how they have the energy. I guess they have youth on their side! And we know that every CML case is different. My husband is good about it but I think he's perplexed at times because we are supposed to have a "normal life," right??

Again thank you all. This "support group" means so much to me!

Justine

Hi Justine, just to follow up, mix a bit of something in that water, it really does have to be your BFF and I hate it too and it will make it easier to drink! Also the B12 is an injection every three months as taken any other way is useless as your body just wont convert it no matter what supplements you take or which B12 rich foods you eat, your regular doctor/ nurse can do it at your local surgery. Your MMR will come, just be patient, it takes time for a lot of people and I always think that the less we can look at ourselves as “ill” the better our body responds - I even fool mine by having a good time every so often!! Take good care and don’t try to be Superwoman!

Shayne

My husband Tim is 6 months into this journey with Imatinib (400mg) and he is self employed.  He is a computer tech/IT support and 80% of the time he does it from bed.  We can not imagine those with a phyically hard job that do it, hats off to you all!  He has reduced his hours because he would get too tired, end up with an infection and then a hospital visit.  It took 3 times for us to wake up and realise for right now, he had no choice but to cut back.  He is back 'full time', though still most of it from bed because of a side painful leg issue.  Self employed 'saved' us but also it is much more difficult to get help for lost income.  Word is finally getting out that Tim hasn't stopped and the work has been coming in again, though slower than before.

It is great you are meeting with your employers.  This might not last forever, so best if you can to come up with a plan for now to cut back.  I don't know your financial situation so these are just thoughts.  He also suffered from brain fog and forgetfulness and his vit D came back extremely low.  Two months being on this really helped and he is much more with it.  Being in a job where you totally rely on your brain, we were thankful for this easy intervention.

All the best.

I think another source of the fatigue has got to be the 24/7 battle going on inside as cancer cells are attacked and killed and innocent bystander cells scramble to keep up daily operations in a war zone.  I mean the work-arounds that all our systems have to arrange each day are pretty prodigious.  Skin and healing, immunity, bone replacement, endocrine and all the feedback loops, all those cell fluid barriers being permeated and re-balanced - the list goes on and on.  Not to mention the cytokines - the final ashes of burnt-out CML cells to be swept up, etc.  No wonder our bodies are fatigued.  You take a smoothly-running factory one day, and suddenly one operation begins to go faulty - a fix is found, but that fix throws other operations off and now they have to adapt, and so on and so on.  At the end of the day, the fix has worked and the factory is standing and producing for another day - but at what a cost!  Unlike with other cancer treatments, ours is never finished and our bodies are never allowed to get back to normal.  Instead (the amazing things) they keep limping along with their various work-arounds, living until the day when a real cure comes along.

Justine thank you for those kind words :)

I wish you all the best.

Teddy.

I work four days a week now, with Wednesdays off. 2 days on, a day off to take it easy then back for 2 days. It works for me.

I’m fortunate that my work had a decent income protection policy for all of us so that pays 75% for the time I don’t work. I think I would struggle with a 5-day week every week. Some weeks I feel up to it, others I don’t.

I’m not sure I fully agree with the “war zone” idea. In the early days, for sure. But as time goes on, and PCR results get lower there are only so many cancer cells to attack. I do know that I feel better for reducing my dasatinib dose, and I am going to pursue that until it can be reduced no further. In my case I’m fairly sure fatigue is caused by the drugs, not the disease.

David.

I think Kat is referring to the off target effects of the TKIs.  Here's a quote from Wikipedia about the subject as it pertains to imatinib:

"Imatinib is quite selective for bcr-abl, though it does also inhibit other targets mentioned above (c-kit and PDGF-R), as well as ABL2 (ARG) and DDR1 tyrosine kinases and NQO2 - an oxidoreductase.[27] Imatinib also inhibits the abl protein of non-cancer cells, but these cells normally have additional redundant tyrosine kinases, which allows them to continue to function even if abl tyrosine kinase is inhibited. Some tumor cells, however, have a dependence on bcr-abl.[28] Inhibition of the bcr-abl tyrosine kinase also stimulates its entry in to the nucleus, where it is unable to perform any of its normal anti-apoptopic functions, leading to tumor cell death.[29]"

My company did not offer any "options" when it came to my diagnosis. They let me work from home for 1 week to deal with the anxiety of it. Then I got an email from HR saying I had to come back into the office every day or file for long term government disability. So it was back to work as usual, no special treatment. I feel like crap in the morning, I am useless in 9am meetings, other than that I guess it is not too bad. I have been at the company for 10 years so I do get 21 PTO days (but we do not get sick days). I use my 21 PTO days to take frequent 3-day weekends to travel to southern US places in the winter and relax here during the summer.

Sorry to hear how you were treated John. It can only have added to your anxiety.

How are you feeling now on the reduced dose? 

Best , Louise 

I'm fine in the mornings, but the afternoons are a waste for me and it gets worse as the week goes on. By Thursday and Friday afternoon, I feel terrible every week.  Mental activity seems to drain me faster than physical activity.

Its ok I did not really expect too much from them. I feel like when you work for a big fortune 500 company in the US they do not give much special treatment or compassion to anyone for any reason. There are rules and regulation for when people get sick and HR and the lawyers make sure they are followed. Kinda sad but is what it is. I just feel bad for anyone who has had a more serious cancer to deal with. Thanks for asking, I am feeling much better on my 50mg reduced dose other than some lethargy I have no real side affects which is great and I rarely think about my CML anymore which is also great!