Has anyone on here lost appetite or taste after transfusions? If so have they come back after time?
Thank you for any help.
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I am also on15mg of Jakavi tablets. Could the affect senses? Thank you
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Dear @JOHNNYA07san, thanks for posting. I have checked the side effects of Ruxolitinib and it is not a recognised side effect but that doesn’t mean it can’t be your medication Ruxolitinib – MPN Voice. I would say that if you are anaemic this can effect you appetite and taste but from what you have said it is after your transfusions? I would mention it to your Doctor next time you are talking to them. I have also checked about altered taste after transfusions but there is nothing obvious. It could of course be the travel, long day and stresses assocated to treatments. Either way do take care and let you Doctor or Nurse Specialist know. Kind regards Gemma
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Oh @JOHNNYA07san how miserable for you. As @GemmaBloodCancerUK says it is always best to check it out with one of your medical team, for peace of mind.
Look after yourself and perhaps it is looking at food as your fuel to give you energy and strength and anything is better than nothing.
Please let us know how you get on.
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That must be really horrible @JOHNNYA07san. I can see that @GemmaBloodCancerUK has given great advice and info. Please keep us updated on how you are doing 
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Sorry to finish on a negative note but have just been diagnosed with Leukemia at 74. I also forget to mention that I had a stomach scan with camera down throat shortly after transfusion which might have affected my taste etc. Last week was very confusing so please forgive my rambling.
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That’s a lot going on for you. I didn’t think you were rambling but if you need to get things off your chest then this is the place to do it!
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Gosh @JOHNNYA07san I didn’t notice your negativity or rambling, this is just the place for you to be able to say how it is for you.
You must really be in shock, first your diagnosis then treatment and tests.
I am 72 yrs old and I was diagnosed 18 yrs ago, but those thoughts and feelings still come whizzing back before all medical appointments.
You are now part of our forum family.
If you would like to talk to someone the Blood Cancer UK support line are there for you.
Do you have any other Support?
Please be kind to yourself, look after yourself and please keep posting.
Yes, can’t taste a thing @JOHNNYA07san and I eat quite seasoned foods . Everything taste quite bland . I also have a nasty burning sensation on my bottom lip - like acid or bleach but you can’t see anything by looking , it just burns -making wanting to eat undesirable . I have 10 minutes infusion 2 times a week . I’m on a different medication from you too .
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No I haven’t heard that but it is reported to be a symptom of COVID-19 so perhaps you had a mild dose of that at the same time and have assumed that something unrelated is connected to the cancer or it’s treatment?
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I seem to find that sweet things are most enjoyable and take porridge with honey, rice puddings with jam, yoghurts, etc. I actually look forward to them for breakfast. This helps keeping me going in food intake and up to now I am hoping that my next transfusion might help to get my taste on savoury things going again. My last treatment was 3 transfusions together and the stomach camera scan in the same week. Maybe the scan upset things. My chemo is 15mg Jakava which also makes we wonder if it affects taste. Best of luck everyone and keep positive
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Dear @JOHNNYA07san, no need to apologise and I didn’t think you rambled at all. I am so sorry to hear that you have been diagnosed with Leukaemia, if you need some support or information please do call or email us How to contact Blood Cancer UK | Blood Cancer UK. Did you have an anaesthetic spray when you had the camera investigation? This can affect your taste for a short while. Do take care and please so let us know if you need anything. Kind regards Gemma
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As far as appetite and taste goes I have being trying to nudge my taste and appetite into action by doing various things. Firstly I have found that sweet things help. Like creamed rice, porridge oats with fruit or jam stirred in. The rice and oats have enabled me to actually get some food into my body. I really look forward to them in the morning and feel slightly hungry which is a start. I have then went on to rubbish snacks in the afternoon but with strong tastes like (believe it or not ) "Whatsits " or XL- cheese crisps which give me a slight hunger feeling again. It seems to be working as I am now getting a slight improvement in the taste of other foods. I might just be being optimistic but it is worth a try and I hope that these ideas might help other people on here. Start with sweet stuff, at least you are getting food into your body. BOL.
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Some great tips there @JOHNNYA07san. Fingers crossed that you taste a little. It more each day. Breakfast is my favourite meal of the day so I’m glad you are enjoying that
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Although not completely got my full taste back, I am now ravenous through the day
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Try what I posted earlier. I started on sweet things like porridge coated in honey, little tubs of fruit flavoured, rice puddings, with added jam, and fruit yoghurt in the morning. Ice cream might help too. I also used Walker’s Quavers shortly before my evening meal. It seems to slowly have helped although not back to full taste. At least the sweet stuff is getting food into your body and I now get very hungry from the morning onwards and I am now stuffing myself with sweet stuff all day… Maltesers are very good. We need not worry about PUTTING weight on for sure.
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Hi @JOHNNYA07san how are you doing now?