mood swings and feeling low

Hi Clare

I've been on Glivec since Jan 2006 - just over the 2 year mark now with counts of 0.5% so OK but not fantastic. I have been getting mood swings of late not too severe mainly teariness and feeling low for no apparent reason.
I was putting it down to a combination of my age (48) and the fact I'm working flat out on a PGCE teacher training course - nearly there only 3 an a bit months to go.

Usually I call them my CML moments - when I feel sorry for myself for a bit.

Other side effects seem to come and go -mainly leg pain and cramps - but not continuous and I can go for weeks with nothing and then a week of nightly leg pains.

It all seems very odd but as long as it keeps working I'm not going to complain.

Marian
Marian

Hello Clare,
it may be that you're are feeling low because you are doing well (with continued zero results) and therefore are able to 'allow' yourself to feel the sadness of having a disease that without daily drug therapy, is life-threatening.
even though i have had a transplant and do not need to take drugs to control CML i still feel have lost my pre-diagnosis positive and more trusting attitude to life. sometimes we need to allow ourselves to experience these feeling and give them a voice. unexpressed sad/lonley/angry feelings can emerge when we least expect and when we feel we should not be feeling them at all.
it is complicated and i feel this area of the cancer patients experience is little understood and ignored.
talking to others in the same or similar situation is one way of understanding how and why we have such feelings of negativity when our disease is successfully under control. if you know other people with CML in your clinic or area then maybe a face to face support group would be a good idea?

otherwise, you could take a look at another discussion thread lower down the page (maybe now on page 2) which discusses the effect of imbalances of hormone levels and the effects on mood etc.
alternative/complimentary medicine is another way to tackle this. although not available on the NHS unless you have a sympathetic GP?

best wishes,
Sandy

Thankyou all for your views .
like sandy said that when you are zero and you are doing really well i dont think they understand your feelings while you are going through this (oh shes zero lets leave her she is coping) but i am not.
im always waiting for the day when they say to me your count has gone back up!!!hopefully it never will.
when i felt like this before my gp prescribed me antidepressants but i never took them cause i was scared !
But just talking to my gp did me the world of good!!!

Also Amanda u mentioned coming off gliveec to have a baby ?
my doctor at the hospital has told me to think about adoption cause i wouldnt be allowed to come off the tablet.
which i think this is all making me down.
im 32 now and would like kids in the next year or 2
clare x

Hello Marian

Just wishing you good luck with the rest of your PGCE - I remember the flat out feeling very well. I also remember the hugely high stress levels associated with being on Practice! It does get better I promise once you have your own class. I've been working as an Infant teacher for 10 years now and I'm pleased to say that I have managed to continue to work full time with CML - even coped with the dreaded School Inspection last week!!! Boy was that another tiring and stressful experience.

If you want to talk about teaching, with or without CML, more than happy to chat - email is dinasperrys@hotmail.com.

Regards, Janet

I've been reading these posts with interest. I'd welcome your views on an allied topic that is affecting my mother (and therefore the rest of the family).

My mum is nearly 82 and was dx in 2000. She's on 400mg Glivec daily. At her last clinic visit, the consultant suggested she took a 'holiday' as she was anaemic and also she was getting severe heartburn - enough to make her vomit. (We'd had a distressing Christmas visit during which we had to call out a paramedic because she was so ill). We think the heartburn might have been caused by anxiety and lack of confidence as she worries about doing non-routine things. She's not going to come to my daughter's wedding in a couple of weeks time because she's worried about being in a strange environment.

However - she's been off Glivec for a month now and the change in her is remarkable! She is SO much more positive about life in general and her confidence levels are soaring! She says she feels better than she has done for months, although she says she's getting even more tired. The heartburn and anxiety have gone and the horrible purple blotches on her arms and legs have disappeared too.

As well as having CML, my mother is blind (because of diabetes) and has restricted movement because of polio many years ago.

We all know that if she continues not to take Glivec, her life expectancy (especially at 82) will be very short. But she (and we) are thinking that if she goes back onto the Glivec, whilst she might live longer, her quality of life will diminish, particularly if she gets as depressed and 'negative' as she was. (I don't blame her for being 'negative' - goodness knows I would be negative if I had all her complications!)

What a tough decision. I'm obviously not asking anyone to advise us what to do but I would be interested to hear people's thoughts.