Taste issues 9 weeks after radiotherapy

Hi Lou

I had chemoradiotherapy, it zapped my taste buds and appetite, finished in June 2023....September before any real improvement....taste and appetite are now back to around 90%....PEG tube fed for about 16 weeks....but every patient is different... I am 69 so I would hope that a younger person's recovery from treatment would be a touch quicker.

Low mood is normal for most, the treatment is very challenging....ask CNS/GP for support?

Take care

Peter

Thanks Peter, he (and we) are desperate to get the RIG out but the dietitian we saw last week said she thinks it'll be in until January potentially which I think has set him back.  Did you have a plan before your PEG came out?

Oncology team and my wife coaxed me to start on solid foods...I was not a willing patient to start with...but had a go.

My wife booked a luxury break in a seafront hotel for September 2023 to give me a target to aim for....I was determined to have the peg removed before then...managed to do it...ate small meals to start with, minced beef and mash plenty of gravy, whole milk, supplemented orally with Ensure 2kal...then gradually built up to full meals...went off to the Canaries in late October...things do improve... takes time.

Thanks Peter

Lou T said:

  How long does it take to regain taste?

Hi Lou six months for me.

I suggest your son uses the PEG to get 2500-3000 calories in daily. That's the adult requirement for recovering from cancer.

When I could manage food I just gritted my teeth and ate it no matter what it tasted like. Food is fuel 

Lou T said:

We're 9 weeks on since treatment finished (and he's had 2 cycles of chemo in that time) but he still feels rubbish. 

I turned a corner at 12 weeks but if your son is getting adjuvant chemo he is going to feel rubbish for longer I'm afraid. His dieticians won't let him lose the PEG until he is maintaining weight on oral intake.

Putting your head down and getting on with it is so hard.

Would he benefit from any counselling ? Macmillan do offer a free service provided by BUPA

Hi Lou,

I am so sorry to hear about your17yr old son having to go through proton beam treatment and chemo

I had chemoradiation (7weeks).It was a brutal experience and I spent most of it in hospital vomiting and in pain.The vomiting and nausea lasted another four months.

Our bodies are unique and all react differently to the treatment have differing side/after effects .

I learnt to accept and quickly realised the feeding tube saved my life but at56 its easier to appreciate. Most of us were told we would feel abit worse a couple of weeks after the end of treatment but for most of us it took a few months before we began to feel better..

I no longer use feedingtube(but its still in due to having a couple of infections and recently used it again). Im in the minority,My taste hasn’t returned and everything tastes like salt/metal and  even sipping water!I can now manage a few soft foods trifle/chicken soup/runny fried egg(with some white removed)spaghetti hoops and a strawberry yogurt.

Tell your son this is just a stepping stone back to health to a life he can love… if he can get enough calories from his feed then he can try things orally I started taking vanilla and strawberry flavoured feed and then tiny mouthfuls of food.I started with tiny sips water then tiny sips feed then tried an extra sip each day and went from there .. baby steps slow and steady …

Aswell as GP and McMillan there are online free counselling services available and young peoples who’ve had cancer support groups . I hope you both have support around you … friends can netflix youtube gaming can all be a great distraction.

Sending you both a big hug

Debbie

Hi Lou

6 weeks is still quite early on in his recovery. I found that it was at least 4 weeks before I even started to feel I had turned a corner.  I think they are hopeful with saying 2 weeks post treatment.  The chemo may be delaying his taste returning.  I had chemo during radiotherapy and it really screwed me up for eating each time it was administered.

Taste will return.  Mine did at around 6 weeks (we are all different).  However the taste is very muted, even now, compared with what I remember food tasted like.  At least I recognise what I am eating.  I kept "eating" fortisps throughout, but had to rely on my PEG for the rest of nutrition and hydration from the end of treatment for around 6 - 8 weeks.  The PEG was not removed until after my 3 month scan, but by that time it was not being used.

Soups are good and I found supermarked ready meals easier to eat than home cooking - they tend to mash up better in your mouth.  Stay away from spiced foods.  For energy, even today, chocolate eclairs (I can't taste the chocolate like I used to) and jam and cream donuts work for me.  Forget healthy foods, just try things until you find something he can stomach and go with that.  If he has a dry mouth I found warm, milky tea worked as a good saliva replacement when eating.  Over time things will get better

Thanks Dani, I've just emailed his social worker and CNS to ask for support.  Not sure if he'll talk to anyone but they'll have experience of dealing with teens in similar positions I'm sure.

Thanks Debbie, we were also told that things should improve 2 weeks after treatment ended, 9 weeks later and there has been some improvement but at a very slow pace and the side effects have been much worse than expected.

I'm sorry to hear that your taste still hasn't recovered.  As you say baby steps are required 

Thanks Peter, he'll drink fortisip when desperate and is now fine with swallowing so water is not a problem.

Thanks for all the food tips too - I'll get some donuts in to see if I can tempt him.