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Loss of appetite on Imatinib

After taking Imatinib for two and a half years I have had absolutely no appetite for the past 3 weeks and have lost quite a bit of weight. It doesn't matter what is in front of me, a few mouthfuls and I just can't eat any more. I see anorexia (but not anorexia nervosa) is listed as a side effect, but wonder if anyone else has experienced this and if anyone has any ideas how to stimulate the appetite.
I am on the Spirit 2 trial and the WIN trial ( as control without the vaccine) so I go to the hospital quite often. I seem to be stable at around 0.1 PCRs and my consultant is pleased with my spleen size. My research nurse just looked puzzled when I mentioned it at my last visit at the beginning of this month, but next time I'll make more of the issue.
Best wishes to all
Chrissie

Hi Chrissie,

you could try eating smaller meals but more often. If you eat small meals say 6 times a day it might help. Make sure you eat whole foods (i.e not processed) and freshly prepared vegetables- some raw like fresh fruit/carrots etc- and plenty of protein.

You are probably under some stress due to CML diagnosis and all that comes with it... this can often result in anxiety and loss of appetite.

Sandy

Thanks for your reply Sandy. Actually things improved for a week but now I'm back to square 1. My nose streams like Niagara whenever I try to eat and I end up sneezing and coughing/choking all at the same time.Sometimes I end up being sick. I'm beginning to wonder if it is an allergy such as hayfever. I'm going to see my GP next week about it and also about my burning feet which I've had now for about a year. Last August the hospital blood dept sent me to neurophysiology for a nerve ending test in my feet and as I heard no more I guess all was normal there.
It may have nothing to do with Imatanib at all, but it's easy to think it's yet another couple of weird side effects.
Thanks again
Chrissie

Hi Chrissie,

Ask your GP to test your Vit B12 levels. I have read quite a lot about this Vit recently and it seems that quite a few of us might suffer from low levels- which can be caused by it not being absorbed properly through the gut. It seems getting enough Vit B12 from food is a complicated process- and it is only available from animal proteins ( which is why vegetarians need to supplement with B12 as too low a level can be life-threatening) so having the right digestive enzymes is crucial. The acidity of imatinib can cause digestive problems.. so it might be that B12 absorption is affected? But that is just my take on it...not expert at all.

Your GP can easily check your B12, but you need to ask- it is not an expensive test.

Best... Sandy

Well, I had my appt with my GP before the Jubilee and he mentioned diabetes as burning feet seems to be a symptom. With regard to my streaming nose, I now have a Beconase spray and that seems to be doing the trick. He tested my blood for B12, blood sugar and other stuff and I saw him again today for the result. I haven't got diabetes, which is a relief, and my B12 levels are normal. I am now walking in thick wool socks and this seems to help my feet - no bowls of iced water now.
It appears that the burning feet is a side effect of Imatinib and is indeed listed in the side effects, but there is not enough data to know how common this is.
As for the streaming nose, this seems to be acute rhinitis and now it's drying up ,I am managing to eat again. Whether this is also an Imatinib side effect is anyone's guess!
Such trivial problems, but the lack of eating did worry me as I had managed to lose 12lbs in 3 weeks.
Thanks for the advice, Sandy,
All the best to all
Chrissie

Hi Chrissie
I was very interested to read about your foot issue. When I was on both glivec and dasatanib I had the most terrible problems with my feet. It started off as having very painful feet when I got out of bed in the morning and I was unable to walk for a few moments, then it got better. It soon got to the stage where my feet were painful all the time especially if I bent them at all or when I first moved off from being still. It was agony and on reflection I guess I would describe it as a burning sensation. I haven't heard of anyone else complaining of this.

It was definitely the drugs that caused it for me; pain disappeared when I came off the medications.

Good luck and I hope you can get sorted out.
best wishes
Susan

Hi Susan
I have definitely come to the conclusion along with my GP and, (having had a hospital appt today), with my haematologist also, that the burning feet is a side effect of Imatinib. The slip of paper inside the drugs packet lists burning feet under side effects which they don't have enough data on.
The discomfort is not as bad for me as you mention as it has never stopped me walking. Thanks to the woollen socks in my walking boots, I am left with a minor form of pins and needles, rather than feeling as if I'm walking on razor blades once I take my boots off. (We live in Devon so plenty of occasion for uphill climbs!)
You kindly posted back last summer when I asked if anyone had had this side effect, before I went to Electrophysiology for a test. My GP is still waiting for the results from this test (Aug 10th 2011).
Had a good day today all in all and hope the acute burning doesn't come back as badly,
Best to all
Chrissie

I also have problems with sore feet, particularly first thing in the morning. From trawling the web I have worked out that it is probably Plantar Fasciitis and I have used recommended stretching exercises which do help a bit.

There are instructions for the exercises here:

http://www.heel-that-pain.com/plantar_fasciitis/exercise/plantar_fasciit...

I did find something on the Leukemia and Lymphoma Society website suggesting that quite a few people suffer with this problem while taking Glivec.

http://community.lls.org/thread/4657

Best wishes

Peter

Hi Peter
When I had these problems I did get checked out for plantar fascitis, I definitely didn't have that. There is a particular 'hot spot' present if you have that condition. My problems went away very quickly after stopping the drugs. I haven't been on the drugs for about 5 years so it is interesting to see that this is now a recognised side effect.

regards
Susan