Loss of appetite and taste changes - what works for you?

Early recovery
1

Just thought I would share an article which I saw last weekend on the BBC online news site in the ‘Health’ section, itwas an article titled ‘Mash and gravy, the strange effects of cancer on appetite’. It was an article about taste changes to people undergoing treatment for cancers.

There have been discussions on the forum in the past about how after transplant we experience loss of appetite , taste changes etc. The article I saw was a review of a book recently published and titled ‘The Royal Marsden Cancer Cookbook’ it came out a couple of weeks ago and is now on sale with 50% of profits going to the Royal Marsden Charity.

A short review in a link described a number of delicious and healthy recipes many of which are from celebrity chefs. It said that all recipes had been selected to be suitable for patients during and after cancer treatment. The book is introduced and edited by a Dr Clare Shaw, Consultant Dietician at the Royal Marsden Hospital.

It may be worth having a look at if anyone is having problems with diet and eating and taste issues at the moment. Have a look at it on the Internet, it is also on offer and reviewed at a couple of well known book shops on line, at a discount too.

Hope this is helpful.

2

That sounds interesting Peter. My taste was affected during treatment as I suspect most of us experienced. Things certainly didn’t taste the same at all and I went off a few foods that I loved before treatment, particularly chocolate! Thankfully my taste returned to normal some time ago.

I went through a period when I couldn’t eat at all due to mouth ulcers and sores, so that my only source of nourishment was milk shake supplements. It would have been good to have had some alternatives that were appetising and that you felt like eating.

I think it is tricky to find something suitable for patients undergoing this kind of treatment. Not only the expectation of taste from the food, but also creating a texture that can be tolerated. I guess another factor is that the nutrients in the food need to be able to be digested easily and quickly, since in my case at least, I couldn’t keep it down for long sometimes!

Steve

3

Hi, can you tell me if the taste changes that occur after stem cell transplant are permanent?
Is it different from the taste changes that occur after chemo, that soon improves ?
My husband has had HSCT 11Feb 2015 and is really struggling with taste and texture issues.

4

Hi Cynthia, I think taste changes are only temporary and certainly were in my case. For me it lasted a few months (maybe 4 or 5) before things started to revert to normal and my taste came back. I’m sure others will confirm this is the case with them too.

I hope your husband is doing well and recovering and please reassure him that whilst it’s a long road, things do get back to normal. Hang in there and good luck.

Steve

5

Hi

Tastes will improve in time, your husband may not have much of an appetite at the moment but frequent small amounts of tasty food will help or stick with what he fancies. My wife would ask me everyday what I felt like eating and we had a different routine from what we were used to, there was a lot of nibbling and pushing food around the plate but we got there.

I remember having the Complan drink which went down well when mixed with ice cream especially when I had no appetite.

I couldn’t drink water for a long time it tasted metallic so we went through a variety of fruit cordials drinks and they helped, coffee was the same I lost the taste for it so stuck with tea and even tried flavoured teas. I also took cordial drinks to bed and a small container with biscuits so I could have a nibble if I felt hungry during the night. I can look back now (almost 3 years) and recall that such simple things meant so much at the time.

Best wishes to you both, things will improve.

Peter

6

Thank you both for your reassurance and help, my husband isn’t one for forums or asking for help, he’s doing OK really but food is a huge issue right now, also he has to drink more and is struggling with that too. So any ideas or suggestions are appreciated.

7

Hi Cynthia,

I haven’t posted here before but have been having exactly the same issues as you so wanted to drop you a line.

My husband had his transplant in November and food has been a real battle but we have turned a corner this last 2 weeks, roughly 4 months post transplant.

Since he came home from hospital I have broken all the “rules” we used to eat by and am now obsessed with hiding calories everywhere! I often make him banana smoothies with a strawberry Complan in it, whole milk and ice cream too. That way, even if I can’t convince him to have anything else that day, he has at least had a good whack of calories.

Some other things that have worked well for us is, whenever I make a tomato sauce for pastas etc, I puree vegetables first and then mix it in (carrots, onion, garlic, fresh tomatoes, courgette), to try and get a boost of veg in without him having to trawl through piles of it when he couldn’t taste anything!

We have a really well stocked cereal cupboard now ranging from porridge and Special K through to really naughty cereal like Krave and Frosties because cereal seems to go down well and he has found it easier to get through.

And I always put a bowl of snacks next to him, pretzels, crisps, sweets, Mini Eggs…he said that if I do that he picks away at it without really thinking about it and those little bits do add up.

As I said, all our rules have gone out the window, I haven’t bought a lettuce in six months and Ben and Jerry are our new best friends, but I figure there will be plenty of time to get back to normal.

I hope you’re ok Cynthia, and sharing this helps in some way. I’ve found this hard at times, watching someone get so sad and angry over food has been hard BUT we are finally getting there and your husband will too.

I never thought hearing the sentence “This is going down well,” would reduce me to tears but that’s what happened last week (after I had skipped to the kitchen to get seconds)!

Best wishes to your husband, and to you, it WILL get better. X

8

I found that my taste returned to normal after I finished on the ciclosporin

9

Think you EDawson & colinparker very interesting and help full advice, not sure how long he’ll be on ciclosporin could be months yet! He had his transplant on 11 Feb.
Yes it does seem a complete reversal of the healthy eating we usually follow, reducing calories no longer applies. He has lost about a stone and a half which needs to go back on, me too for that matter and I’ve not been dieting!! I will certainly follow your advice but to be honest he’s the cook here as I’m rubbish. Things are improving a little as he tries to get back to feeling stronger, short walks and short local drives to supermarket seem to be inspiring him to try different things. We’ve had a few successes but also thrown a lot of food away. Will stick with it, no choice, and wait for it to get better, how long were you on ciclosporine Colin? Suppose each patient is different? He’s Not showing any signs of gvhd yet

10

I had my transplant mid February last year and they started reducing my Ciclosporin mid July. It took until September before I was clear completely because they wean you off gently. In particular I found that milk in tea tasted so creamy as to be sickly, I also found that I had a slightly upset stomach most of the time until the ciclosporin stopped… nasty powerful drug. I went through a phase of loving canned pilchards on toast…

My advice is to take a little notebook with you to clinic and make a note of specific questions about foods that you fancy trying and ask before you try something new. And keep pushing, the rules change as time goes by and they won’t necessarily tell you. Big moments for me were chip shop chips, proper veg, and SALAD :slight_smile:

It does get better but it is a hard slog. You’ll look back on it and wonder where the time went…

11

I’m not so sure that taste changes are affected by Ciclosporin and wonder whether your taste return was coincidental to your reduction from Ciclosporin Colin?

My taste returned to more or less normal within about 6 months of my transplant, yet at that stage I was still on a fairly high dose of Ciclosporin due to GvHD. Even now, almost 2 years and 2 months after my transplant I’m only just about off Ciclosporin as my GvHD is finally under control and virtually gone.

As soon as I was able I went back to the foods I used to enjoy and probably threw caution to the wind a little once I was happy that I was no longer neutropenic. That included going to the local chippy and take-aways (and even fast food places), and barbeques in the garden complete with washed salads.

Having struggled with gaining weight after my transplant initially I went onto prednisolone for my GvHD and that kicked my appetite into full gear and weight gain soon followed. In fact I struggle now as I’m constantly nibbling and have ended up putting too much weight back on. I got a ticking off from my consultant a couple of months back who is now making sure I lose weight so that I don’t suffer from coronary heart disease!

Colin is right though Cynthia, as things will return to normal soon and very shortly you will be able to look back as though it’s a long way back in time.

12

All these posts are so very helpful for us, and its really good to hear about your journeys. Gives us courage and hope for the future. Found the journey so far quite scary and with no guarantees, can only take one day at a time for now, but looking back, you realise you’re getting there slowly.

13

You could well be right Dieseldrinker62 - who knows! The consultant did say that a lot of people report that food tastes normal after the Ciclosporin is stopped but they don’t know why! The good news is that we’re not stuck with dodgy taste for life! Pleased that you are finally of the Ciclosporin - GvHD is a pig isn’t it

14

Hi Cynthia

Pleased to hear that you are finding this Forum useful, many of us will agree that our experiences are very similar to what you are going through now but things will improve given time and taking small steps.

It may help to keep a diary, Colin has mentioned keeping notes. My wife found this really helpful and was able to give the doctors at clinic a week by week running commentary of the ups and downs. The amount of drugs I took after transplant really had an affect on me at the time and I felt weary for months, so my wife’s notes were a real help.
I have just checked with one diary that I stopped taking ciclosporin 3 months after transplant, I agree with all the comments above that things improved after that albeit slowly for me.
I do remember the smell of the tablets on opening the foil and found it really unpleasant.For me also the feeling of sickness reduced when I stopped the ciclosporin.
I also agree the GVHD is a pain at the time but I always found the medics had a solution which helped. I still have a little dry skin nearly 3 years on and dry finger tips but Diprobase helps as do expensive hand creams that you find lying about the house!

Best wishes for a speedy recovery, do keep us updated.

Peter

15

Peter

Interesting, I wonder which size tablet did you find the worst to swallow? Weirdly I found the 100 and 50mg tablets ok but the tiny 10mg a complete nightmare - kept bouncing off the back of my throat… Very difficult to swallow

16

Colin

You pose an interesting question, I have just gone through a hand written list which my wife made on discharge from transplant and

17

Colin,

Sorry about the above, pressed the wrong button, I was going on to say that on discharge I took 35 pills a day which my wife dispensed with great care. We have just gone through the handwritten list she was given and agree the antibiotic tabs were the worst to take, probably the worst was Itraconazole. Personally I disliked the Calcichew, it was always the last one I took.

It’s amazing to look back at this list with it’s many crossing outs and dates alongside to see when the various drugs were stopped and to see how we were making progress at the same time.

One of my sons had a saying each time he rang me which was ‘do the drills and take the pills old man’, this was his way of encouraging me to be positive and take advice from those in the know.

Peter

18

I hated the 100mg Ciclosporin tablets Colin. They were like trying to swallow the old Liquorice Torpedo sweets. Whenever they were dispensed I used to ask the pharmacist to change them for 50mg tablets.

By far the hardest tablets I’ve found are the Aciclovir. Being water dispersible I found that if you don’t swallow them quick enough they start to break up in your mouth and I sometimes get them lodged in my throat, which isn’t pleasant!

Steve

19

Yeah, like swallowing the Hindenburg! Actually the worst thing about the Ciclosporin I found was the smell.

I was taken off Aciclovir because it was affecting my liver and put on Famiclovir instead which is not soluble, although I have to admit that I always use to dissolve the Aciclovir and take it in a plastic cup. I have real problems taking tablets still, although the number is now massively reduced - down to 5 a day.

When I was taking loads I was advised by a nurse that if I was struggling to take them in 4’s with a break in between and that really helped.

I have also found that taking the tablets with lemon squash rather than water disguises the taste and that also really helped.

20

Peter

I have just taken a look at my old tablet list and you are right. It is a pretty good record of the progress that we have made isn’t it.

Colin