Hi my Platelet count is dropping,is there any food group I should be eating to boost it?
You are here
Platelets
Hi Michael,
I am not aware of any particular foods that support platelets i particular. How low down the scale have your platelets dropped? normal counts are between 200-450 or so but some people have had counts as low as 100 without being overly concerned.
When I was first diagnosed I had a higher than normal platelet count and was advised not to take melatonin as this could boost platelets. Not sure what science this was based on but.....
Melatonin is not available in the UK, so the only way to get this substance is to take Tryptophan which is an amino-acid. Tryptophan is a 'precurser' to seratonin and then melatonin. But I advise you do a little research first.
Whilst melatonin is readily available in the US and is often used to counter jet lag or insomnia and ensure good quality sleep it is for some reason banned in the UK. I have never been able to find out why.
Sandy
Diana G
Hi all. A point of interest - melatonin is now obtainable on prescription under the name Circadin. I tried it for chronic (very chronic!) insomnia - took two three-week courses of it - but it didn't do very much at all.
A different CML topic: I have been on Glivec since December 2006 with very good results (MMR for months). On my last visit to the blood doc I complained about what I took to be more recently developing side effects - i.e. effects which were not apparent from the start. These included breathlessness, more noticeable 'ringing' in my ears, sore eyes in the evening and heartburn. However, he maintains that these conditions are nothing to do with Glivec, merely normal signs of ageing which I have 'suddenly' begun to notice. Hmmm. I don't really know what to think now, except that I must have aged a heck of a lot in a very short time. Four months, in fact! Hey - I'm only 59 and suddenly I can't walk up hills! I know for a fact that one particular side effect - a loathing for red wine which I used to enjoy - has only developed latterly: so why shouldn't other side-effects be gradual? After all, Glivec is a very long-term drug...
I am so fed up with these 'side effects' (or not!) that I asked him if I could come off Glivec for a while. He said OK, but for no more than a fortnight. I know that Glivec 'holidays' can be dodgy...I think I only want to do it to prove to myself - and to him - that my new symptoms will disappear during the fortnight and are therefore Glivec- induced.
Any thoughts, please?
Diana
Hi Diana
I have been on Glivec since July 2008. I must also have suddenly aged. I have got tinitus and some heartburn. But luckily I am still OK on red wine, although gin and tonic is better.
Tony
Diana
Initially and then for at least 18 months I also have had trouble walking up and down stairs, up train ramp overpasses etc. However I can walk down stairs easy enough.
I have just started Gym again and finding it difficult to do some of the exercises.
Interesting enough I even walk slower even though I think I am walking my normal gait.
Tinnitus is a side effect of glivec as is vertigo in some people. I would suggest reducing your sodium levels and this will assist for these issues. To do this go to website
www.saltmatters.org
No not old age at all - Part of CML condition and that of glivec side effects - have a look at your pamphlet in tablet box for side effects
Exercise does help with fatigue and walking does help
Sue
Hi Diana
Glivec holiday....ooh be careful! I know that your results are brilliant, and that you are stable in MMR and have been for ages but...I'm not sure I'd do it, not even to prove a point to my consultant about problems being glivec related. Before taking a holiday, I'd look at other options and also consider how I would feel if my PCR went up whilst I was off glivec. How easy would it be to get it down again??
What about swapping drugs - is dasatinib/nilotinib worth considering?
How many CML patients does your consultant have? Does he know enough to speak with authority about stopping glivec for a while? My consultant only has about 15 CML patients, and I think if it was me I would want to get an opinion from an acknowledged CML expert before making that decision.
Best of luck with whatever you decide.
Janet
Hi Diana
I have only been on Glivec 4 mths and in that time have had almost all listed side effects but generally not at the same time. They come and go with no obvious pattern. However, I have noticed 2 very obvious ones. I am 51 this year and I power walk regularly (5 kms at least once each day and sometimes twice) so I feel I'm reasonably fit, but stairs now do me in and leave me weak, shaky and slightly breathless. I find this bizarre as I can powerwalk 5 km without any problem! The other strange thing I now have is an odd taste in my mouth which starts about 2-3 hrs before I take the Glivec and lasts for a few hrs and then disappears. Has anyone else experienced this? I haven't mentioned any of this to my doctor as my results are excellent and I don't want to sound like I'm whinging or ungrateful as the alternates to Glivec treatment are limited.
Jeanette
Jeanette
I am PCRU - and have been on glivec for nearing 2 years
Around the same period of time as yourself (around 4 - 6 months of glivec) I started to have a metallic taste in foods including some foods completely tasted different.
Other product such as cup of tea started to taste different to the stage I could not drink. Even herbal teas.
Then found I had become lactose intolerant (not a true lactose intolerant) but had reactions against milk, yoghurt, butter, margarine etc within 4 hours of each side of taking glivec.
Now days I drink just waater and have a hot chocolate drink
at end of day, with very low reduced milk and only a little.
I have also started taking a liquid supplement prescribed from a clinical dietician attached to the hospital to give all minerals, vitamins, calcium etc that I need for my daily intake.
Note: I take 600mg glivec in the morning at breakfast with 3 pieces of toast with jam (no butter etc)
Like you - flat walking great - walking up stairs and ramps a killer - really feel the legs. As your bloods (hbg) get to a normal level this task will become easier.
Sue (Aussie)
Hi Diana
When I was on glivec I had a multitude of side effects, not all of which developed at the same time. I had some appear pretty quickly and some took longer and some took even longer....
I had some of the more common side effects and some that weren't documented. They all disappeared within days whenever I had a glivec 'holiday'. It is quite frightening to see how quickly normality returns.
I can see that you are only having a break with your doctor's 'permission', don't do it any other way. I am of the opinion that the odd break doesn't hurt. Some people do say that the side effects do not appear when you restart the glivec however I didn't find that.
I had the breathlessness but not the ringing in my ears. I definitely believe that the glivec does very funny things to our bodies, especially to us ladies!
I was fine with red wine initially but towards the end of my time on glivec I couldn't tolerate it, which was a pity as a glass of wine did allow me to forget all the other troubles.
I am now post-transplant, I had to stop the glivec and sprycel as I was deemed intolerant.
Hope my reply helps and I would be interested to hear how you do on your 'holiday'.
regards
Susan
Susan
Hey Michael
Low platelets has been a constant problem for me so much so that I am now having a transplant as I can't stay on the drugs long enough for them to have any affect. I have found the docs don't usually start to worry until my platelets go down below 50 which is when they take me off the drugs in order to allow the counts to recover. However my platelets have been down in single figures and I had no real problems even at that level, it just meant two bits of cotton wool to stop the bleeding after a visit to the hospital for checkups.
I was told there is nothing really that can be done to boost platelet counts except to have an infusion which is only a short term solution, if you hear any different please let me know. It will be too late for me but I will pass the details onto my specialist.
Good luck to you