New member: Hi, im Angie, i was diagnosed... - Leukaemia CARE

Leukaemia CARE
803 members405 posts

New member

Swimmer19
Swimmer19
7 Replies

Hi, im Angie, i was diagnosed with CML in October 2016. Ive been on imatinib 400mg since diagnosis and the main side effect being chronic fatigue. Just recently the fatigue has gotten worse and the consultant said its nothing to do the meds or illness. Got to say its really getting down now, i go swimming twice a week and recently qualified as swimming teacher. It doesn't matter how much i exercise and rest the fatigue is getting unbearable.

7 Replies
oldestnewest
ColX-UK
ColX-UKChampion

Hi Swimmer19. I was diagnosed with CML in July 2016 and have been on imatinib ever since. I know what you mean about the fatigue, it can really get you down.

According to my haematologist it is definitely a result of the CML and the imatinib so I think your consultant is wrong. I have been a slow responder and order to get my BCR-ABL down to MR3 I spent 12 months on a higher 600mg dosage. This made the fatigue worse and made me moderately anaemic which in turn made me even more tired. Am back on standard 400mg now and hoping things improve. Might be worth checking your Hb from your recent blood tests to see if you are anaemic.

The only thing I have found that counters the fatigue is exercise. You seem to be doing the right thing. Exercise (walking, golf and a bit of running) gives me more energy but at some point I have to give in to the fatigue and rest up.

Take care

Reply
Swimmer19
Swimmer19
in reply to ColX-UK

I think some of the problems with consultants are that most i see are locums, i see them once or twice they move on. 90% of consultants ive seen have said the fatigue is due to the meds and illness but there have been 2 or 3 that have left me in tears saying i was lazy, despite exercising. On my last appointment i had one who is under the impression fatigue is due to something other than meds etc so gave me more blood tests. When i was first diagnosed with CML I was diagnosed with anemia and put on medication then they stopped it when the results were good. Recently been tested for anemia, checked magnesium and quite a few others and have all come back in the normal range.

Reply
ColX-UK
ColX-UKChampion
in reply to Swimmer19

I am lucky, I have had the same haematologist since diagnosis. Sounds like your locums don’t really know what they are talking about. That said no magic cure for fatigue but I think exercise helps

Reply
HAIRBEAR_UK
HAIRBEAR_UKAdministrator

Hi Angie welcome, sorry to learn of your fatigue and the unwillingness of your doc to consider that treatment may be impacting.

Leukaemia Care hold patient days that bring together patients to discuss strategies with experts to help each other combat symptoms and discuss coping strategies. Local support groups can also be a good source of support. I see you may not be in the UK, have you access to local support groups? I am sure many here can share strategies that help them cope.

We have a Living Well With CML booklet available here that may be a help media.leukaemiacare.org.uk/...

LC video on tips to combat fatigue.

Reply
Swimmer19

Thanks for the you tube link. I am in the UK and have attended a local support group a few times but unfortunately didn't really get anything from it. Ive also attended 2 Leukaemia Care days which were very helpful.

Reply
2003UK
2003UKChampion

Hi Angie, I am sorry to hear your fatigue is getting unbearable. I find since my diagnosis I do not deal with what personally stresses me well and that can bring on my fatigue. My fatigue can come on immediately or up to 48 hrs after I have overdone it emotionally or physically. I went to a conference yesterday afternoon and just listened to the presentations but today I feel really fatigued. I do agree with taking exercise or resting when I need to. I also find fresh air and interacting with people help me. My mind is often my worst enemy it is like a washing machine going round and round. Don't forget the Leukaemia Care Charity helpline is there if you need it and it is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. I also believe in really keeping on at my medical team if I need to. Congratulations on recently qualifying as a swimming teacher, that would bring on a lot of fatigue for me. Take care of yourself and give yourself the odd treat, you deserve it.

Reply
Swimmer19
Swimmer19
in reply to 2003UK

Thank you, The training courses to qualify were extremely hard going but the tutor and fellow students were fantastic and tried to make things as easy as possible for me. Ive taught a few lessons and it seems to be going really well.

Thank you also for the phone number and leukaemia care charity details.

1 like
Reply

You may also like...