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Hi

I am a 58 year old woman, who was diagnosed with CML in November.  I would like to say hi to everyone in the forum, and also a huge thank you for the information that you have shared here.  This is sometimes a lonely journey, and it can be a struggle to find information about the "quality of life issues" rather than medical facts.  I have found it enormously helpful where you have shared the impact of this illness on your everyday lives, and it has helped me to appreciate that the symptoms I continue to experience are not invalid.

I am taking Imatinib and whilst this is controlling the illness, I am experiencing side effects such as nausea, upset stomache, aches and pains and horrible fatigue.  It has been so helpful to know that this is "normal" - some consultants feel that providing the blood levels are OK then there are no side effects from the medication or the illness!  This I am struggling with at the moment.  I want to request early retirement on health grounds, because of the fatigue and other side effects, but unfortunately although my doctor agrees this would be a good idea, he will not confirm in a report that the illness or medication has any side effects.  I am therefore going through the process of having to obtain a private second opinion to support my request for early retirement on medical grounds.  Otherwise I am faced with having to return to a demanding job (used to work 50 hours a week in a high pressure job) or being sacked on incapacity grounds!  Has anyone else found themselves in this position?

Many thanks 

Jean  :-) 

Hi ,ive just put a post  on about fatigue as this is my biggest problem,ive had several replys saying they feel the same,could you not print my post and show your doc,I phoned my cancer nurse the other day to ask for advice on how to cope with the fatigue  as its becoming harder to live with and she said ther is now evidence of fatigue gradually getting worse in patients taking glivec over a long period of time,So your defo not on your own with this one.xx

Welcome to a club no-one wanted to join.  My wife was diagnosed almost 6 years ago at the age of 51.  She has been on varying doses of Imatinib ever since and has suffered from a variety of side effects.  Although she was not working at the time she was diagnosed, she applied for ill health early retirement for a preserved pension entitlement she had.   She had a very helpful consultant at the time who was happy to confirm her symptoms and as a result she received her benefits.  I should say that at the time, Imatinib had only just been accepted by NICE as the standard treatment for CML and no-one knew if it was a long term treatment, so maybe now it will be more difficult to get consultants to provide the necessary certificates.  Whilst life continues to be good, I am sure that my wife would have really struggled to return to a stressful and active job.  Others may have better information but I think there may be some scope under employment/disability  legislation to fight any suggestion of being sacked on incapacity grounds.  So soon after diagnosis, I know everything seems difficult but you have to dig in and be ready for a battle.

 

Simon

Hi Jean

I haven't posted anything for ages (diagnosed Dec 2008) but when I read your post it nudged me to reply.  I am 52 this year so I was 50 when diagnosed with CML.  I was working in a very demanding job - high stress and long hours.  I began Gleevec in January 2009 and have responded well in my bloods. I agree that for drs this is obviously the major concern.  We as CML patients have gone from being terminally ill to having a high chance of a 'normal' life span.  I have coped reasonably well with gleevec but do have problems with fatigue.  I am still working full time but am not sure how long I can keep that up as the fatigue some days is very debilitating.  I have felt disinclined to ask dr about this as I don't want to be labelled a whinger.  I know I should just feel blessed and fortunate to be alive and have access to gleevec.  However the fatigue is not in my imagination.  This has become a mental struggle for me and I know a decision will have to be made by me around work in the next year or so.  I don't get why I feel guilty about the possibility of semi retiring  or asking my dr about it but I do empathise with how you are feeling. 

All the best with your treatment and side effects. 

Jeanette

Hi Jean,

               there is undisputed evidence regarding the side effects of Glivec. Read the leaflet from the box that the Glivec comes in. There's a whole list of the possible side effects and I quote one paragraph

-----------------------------------------------------------:

Other very common effects:

These are likely to affect more than 10 in every 100 people.

Headache, Nausea, Vomitting, diarrhoea, indigestion, rash, muscle cramps, pain in the muscles and bones, and swelling [including puffy eyes and ankle swelling], joint pain, tiredness, increased weight.

-------------------------------------------------------------

 

There is a list of other side effects as well. It might be an idea to show your doctor the leaflt as well as guide him to this site?
 Good luck in getting your early retirement, if CML doesn't qualify you for it, what does?

I think you should be seeing your consultant and ask if you might change drugs if you find the side effects to much ,being DX in November its still early days you have not tried other drugs yet , any consultant would want to see far more evidence and over a far longer period before making any report.

Hi Jean

I was dx in May 2007 (3 years ago on Monday) and have been on Imatinib and Dasatinib both of which caused major fatigue. My employer was open to me working part time and working from home. I have since had a year off for a transplant and am now in the return to work mode, once again they have let me work part time and from home and this is likely to be for a while because I am back on the Imatinib and suffering again. I know I have a very good employer but much of what they have allowed is covered by employment law. Maybe you could approach your employer and see if they can offer similar help; it would be a shame to stop working this early in your journey when you could find yourself feeling considerably better later down the line and subsequently regret the decision. I have found work to be a real source of strength, it allows me to feel normal and gives me things to think about other than CML.

I hope you find a solution that works for you and will remember you in my prayers

I'm interested to hear these discussions as I have been on Glivec for a number of years and am finding the fatigue very debilitating, to the point where I am having to seriously consider reducing my working hours (I'm only 32 and never dreamed that I would not be able to cope with a full time career.).I feel that I am complaining as Glivec allows me to lead an almost 'normal' life and I have to keep reminding myself how much energy I had prior to being on Glivec and that fatigue like this is not normal! I'm interested to hear that there might be a cumulative effect from the drugs. One of my issues has been whether I can negotiate working from home, but without medical back-up it is difficult to prove the fatigue is from the drugs and therefore merits concessions on the part of my employer. I'll be watching this strand with interest!

Hi everyone

 

Again, my thanks to your helpful replies.  Unfortunately my employers are not willing to wait any longer to see if I am likely to respond more positively to treatment and experience reduced side effects in the longer term (I have been off work of 6 months) and have made it clear they wish a resolution as quickly as possible.  Working from home is not an option, and the unreliability of fatigue, "sudden flat battery syndrome", of upset stomach make any reasonable adjustments difficult.  I am therefore, on Union advice, going to get a second opinion rather than being sacked under incapacity rules.  In addition, because my platelet levels went up to 2,600 (about 10x normal levels) I experienced what I was told were TIAs but now appear to have been migraine attacks that behave like strokes, and still have some memory/language problems (again, similar to a stroke) which means I am never entirely sure what is likely to come out of my mouth!  Not good if you are running a business.....

 

My concern is that for anyone else working for my employer with CML, the right to need either medical retirement or to continue working should be maintained for the individual to make a choice depending on their wishes and responses to treatment, rather than establishing a precedent of dismissal due to incapacity.  I'll let you know how I get on.  The Union have been supportive in terms of getting a second opinion so am off the Imperial College.

 

Jean :-)

Hi Jean

Let us all know how you get on with your second opinion. It's the last thing you want to deal with when you are already feeling bad but I guess employers have to have a 'party line' on things for their own sake and to stop others trying it on. The bad migraines sound awful, mine cleared on Glivec but came back with a vengeance on Dasatinib and I often take time off for them now. Fingers crossed all works out for you

K

I have had a few days of feeling very lacking in spark and find it difficult to find support.


I don't want to winge to children (37,33 and 30) as their lives a very full.

Am wondering if the temperature, fatigue and dizziness is due to virus going around?

Just want to sleep and sleep and have been cancelling a lot of functions.

Have just had my 90 year old dad with me for 6 weeks. Could this really cause so many extra symptoms?


Your comments would be helpful!

beth