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fatigue

Hi ,ive not posted for along while but i do pop on now and then.Im having a problem with constant fatigue ,its really getting me down,ive been on glivec for 6 years and im doing really well,so i cant grumble to much but i never feel awake these days,does anyone else feel like this.x

Hi, I've been on Glivec now for 6 years too. I'm 48 years and feel worse now with fatigue. I've applied for a job but dreading it as I'm not sure how I will able to cope with the constant tiredness. I'm doing very well on Glivec pcr 0.004 but the fatigue is getting me down too.  I went to the meeting at Hammersmith last month and David Marin said that more people are affected by tiredness than what they originally thought. (re trial 100 people on Glivec). So yes, your not alone. Angela x

I think from the various meetings I have been to it is a general thing. I have just asked to drop my hours at work down as by the end of the week my head is a mush and I don't seem to work as well as I used to. I improved when I went onto Dasatinib but now seem to be back where I was

K

Thanks for your replys,i can honestly say that im exhausted,even typing seems an effort at the mo,ive been looking at chronic fatigue syndrome and its me to a t.I always  feel guilty when i complain,its such a wonderful drug thats working wonders for me but oh my i really could sleep 4 a week.Anyway i now know thats its not just me ,so i can stop worring,thanks guys,

kathy

My husband is exactly the same, he's been on Glivec for 6 years and doing well but in the last few months fatigue has become quite bad and is now effecting his work.

Ali

Reading through the comments i can reflect on how it gets some people, with me it seems to be if i have a late night or two, even more if i have had a few cheeky drinks. I can easily go to bed for the whole afternoon, but if i cant mange to get rest, i then get chest pain right in the center of my chest and until i have rested it does not go away, its not nice and i have always had the chest problems on Glivec. I also will not moan about it as it made me reach MMR by the 15 month mark. Sometimes I actually do think it is something other than the meds but i,m not going to experiment and stop taking them. I think we are all extremly lucky to be getting these TKI's.

Chris.

I just wanted to add that this overwhelming tiredness is a real problem for my son. He has just turned 18 and was diagnosed at 15. He's just changed over from Glivec to Sprycel this week in an effort to try and feel a bit better. I agree that the tiredness seems to have got progressively worse over time not better as you would expect. He's been falling asleep at school recently. He's also got A Level exams to sit. Thankfully he's been allowed extra time and rest breaks. I can't let myself think too much about the future and what work he may be able to do. He's a talented ceramic artist and is going to be doing this at University. Maybe he will alway have to work for himself, that way he can listen to his body, rest when he needs to but capitalise on the times he feels ok. Incidentally he's been having headaches and blurred vision since starting Sprycel. So far no return of the joint pains. 

Sarah R

Hi Chris.... have you told your doctor about he chest pain? It might be that you would benefit from one of the other TKI's and you would not suffer this sort of side effect which should not be ignored. 

I am really worried that so many people are suffering from overwhelming fatigue as time goes on. I know it is very hard to hold down a full time job as well as take long term medication for a life threatening disease. Life can never be really 'normal' after a diagnosis of CML- I do hope very much that we will see a cure through drug therapy (rather than transplant) in the near future. 

Although it was difficult at the time I feel fortunate that the option of an reduced intensity sct was available and my doctors were willing to enrol me on the RIC sct+ glivec study even though I had a glivec resistant mutation. Of course i still get tired but at least I know that is due to age and general stress of having too much to do rather than a drug that I need to keep taking in the long term. 

I hope you can talk to your doctor about the chest pains.

Sandy

Dear Sarah,

I am so glad to hear that your son managed to get access to dasatinib and hope that he finds it a more effective drug to manage. I am also intrigued to hear about his talent as a ceramic artist. I work with ceramics and have a studio at an arts complex in North London. We have an Open Studio weekend coming up ( end of June) so if you would like to visit (there are several ceramic artists there) let me know and I will send you a flier. 

Sandy

Hi

I wondered if many people on Dasatinib are experiencing fatigue, how it pans out over time, and whether it's affected by stress.

I've only been on Dasatinib for 3 months, fatigue manifests itself as very intermittent sleep (despite being tired) for the first 3-4 hours in bed, then a huge lack of desire to get up in the morning. I'm fortunate in not having a 9-5 job, but I don't think anyone would put up with me if I did.

I also have a lack of concentration and focus - I have a background in highly detailed and stressful management roles, which I could never do in this state. I even prefer not to drive any significant distance before about lunchtime. In the past I was easily able to manage with 6 or less hours sleep a night - definitely not the case now.

I'm at the final stages, after over a year, of a very acrimonious divorce, with a lot of stress caused by the battle to get it over with. I have considerable pressure from my ex to get back into highly paid work to facilitate her maintenance claims, and she (or her lawyer!) is convinced that my CML diagnosis is simply a 'divorce tactic' and a temporary hiccup in my ability to get back into high-earning, stressful work. I have the (sadly not unusual) difficulties in post-separation relationships with teenage children who are very close to their mum, and living alone doesn't make it any easier.

Dasatinib has hit the CML very hard (CHR in about 40 days) I'm very happy to have it, and very positive about life generally, but I can't tell if future reductions in stress or tolerance to Dasatinib might reduce the fatigue, or whether I just need to re-organise both my life and my expectations to live with it!

[Further note: I guess this paper suggests I may have to live with it!
https://ash.confex.com/ash/2011/webprogram/Paper43712.html
]

Rod

Heartening to hear I'm not alone with the on-going fatigue. It's all very well tailoring life to what can be managed, but the financial implications are a big problem. I've reduced to 23hours a week, but it's the early mornings that are a real killer and they are the hours I can't cut. I'm sure many others find this to be the case too and, as good as Dasatinib is, it really doesn't help that no matter how tired you are, sleep just doesn't go on beyond a couple of hours for me, requiring medication every night which just adds to the problem of getting up at 6.30 every day.
Benefits-wise, I am able to get Disability Living Allowance for Mobility and this claim was mainly based on my vulnerability to cope whilst out. I liken it to a switch being flipped and then I become mentally, physically & emotionally incapable, pain ensues, I can barely walk and someone has to get me home. Anyway, the point is that if you can get DLA, and it's not easy, it does entitle you to Working Tax Credit providing you work more than 16 hours a week. Current benefit changes will not affect these hours. If you go this route, I cannot stress enough the importance of having help filling in the DLA form, better to get someone else to do it with you and complete it based on your very, very worst days.
We are all very lucky to be on these TKI's, but it aint that easy!
Love y'all and my sympathies to RodM for his situation & one which I went through whilst suffering CML prior to diagnosis.
ATB
Vickie

Hi Rod... I am not surprised you are feeling so tired- yet are still unable to sleep! I think the article you provided the link to says it all really..I note the word sadness is included in this list.

Sadness really was something that I experienced (and intermittently still do) when I was diagnosed with CML. I was fortunate that I had, and still have, a supportive partner, I cannot imagine how I would have coped if I had been in the position you describe yourself to be in.

Stress from a diagnosis of a life-threatening disease as well as from the clinical therapy needed to control it will both be factors that are causing your fatigue. You probably need at least 8 hours of good quality sleep if you are to cope, certainly over the short term. I think you are right when you say you might need to re-organise and maybe re-evaluate too.
But you will ease into it as time goes on and find your individual levels for what you can and can't do.

The article concludes with the following which has a pretty direct message regarding factors the cause fatigue:

'Conclusion: The HFG had higher severity levels of other symptoms of pain, sleep disturbance, shortness of breath, sadness, swelling, muscle soreness, and malaise. Neither disease status nor treatment with different TKIs correlated with fatigue group membership. Marital status was the only socio-demographic variable that was correlated with fatigue group membership. Further possible determinants of fatigue severity and longer follow up studies are needed in future analyses.'

The most important thing for any patient is to take the time to reassess and re-negotiate... mainly with ourselves ;o) but also with others close to us. There is a real element of denial at play (for obvious reasons) often by close family as well as friends.

I also feel that patients inevitably expect to much from themselves, and just because CML therapy has changed the prognosis of the disease, and allows most of us to live as close to a normal life that we had before diagnosis, we should never forget that a diagnosis with CML remains a life-changing event, nor should we protect others from that fact.
Allow yourself as much time that you as an individual needs to adjust.
Your children will eventually reach their own understanding - they have a lot to cope with too, and it is hard especially for teenagers.

Best wishes
Sandy

The period leading up to my diagnosis 2 years ago was a multiple stress scenario. The eonomic downturn impacting business and plans to marry. I was also involved in a human rights campaign where my colleague and I became targets for a smear campaign.

I'd been going without adequate sleep for a long time and have wondered from time to time whether this might have been the root cause of my illness.

I was luckier than my colleague, one of 50 million Americans without health insurance, who died of chronic liver disease.

Today, focussing on something much bigger than myself is the way I cope with the present.

Just wanted to add that fatigue seems to be a big problem for me more so now than at the beginning, i have been on glivec for only 12 months and my response is not as fast as my doc would like but.... i am so tired lately i can barely stay awake for the dya and i am having to go to bed at around 8pm which is when my son goes. I am unsure why i am so tired as nothing has changed, but even if i have a relaxing day i am goosed. I am taking vitamins to see if this was the cause but who knows.

I will be speaking to my doc at the next visit in July when i will also get my latest PCR hopefully better than last time.

Just thought i would share.

Hope you are all well

Thanks

Naomii x

I too have the same problem with fatigue, especially in the mornings, it doesn't matter what time i go to sleep, i find it so hard sometimes to wake up in the mornings to go to work sometimes. i usually end up just sleeping on my days off, just to catch up, which can kinda of gets you down sometimes as it gets a bit boring just working and sleepng. I work shift work as well so that doesn't help the situation either. However, I find it comes in waves though, so i guess i kinda just ride it out, as I know the feeling will wear off in time. The trick is to be really productive when you're feeling at your best, even though I feel really tired, I still make an effort to do things even if it is something small.

Hope this helps,

Sharon