No Taste

[MelaniePaul]

Hi everyone.

I suspect many of you experience the same problem: a couple of days after a Chemo infusion, usually two or three days after the infusion, nothing tastes right or the taste is completely gone. Paul had this problem during all his 8 cycles of Carbo Platin. Then when he was admitted to hospital at the beginning of April, which would have been the time for his 9th infusion, the taste was back. But it went completely during his time in hospital even though he was not on Chemo then and it hasn't come back since. It is just heart-breaking to see how much he is trying to eat and to be motivated but nothing tastes of anything and the few things that do have taste don't taste nice.

I would have thought that the taste comes back each time. Is there a way we can help the cells to grow back so that he can have taste again?

He will probably go back on Chemo next week. We both feel it is the right thing and in fact very necessary to control his cancer. But it would be nice if there was something we could do about the taste. It would give him such a boost if things tasted right again I think.

Mel.

[Tall_Allen]

Some guys tell me that sucking on ice chips during the infusion may prevent this problem (dysgeusia).

[MelaniePaul in reply to Tall_Allen]

Yes, I know. But now the taste is already gone.

[Daddysdaughter]

My father ate ice chips and drank ice cold tea during infusions, he only had 4 but never had tastebud Loss. We also iced fingers.

[MelaniePaul in reply to Daddysdaughter]

We can't really do this, you see, because Paul would get a sore throat from doing that, sometimes even chest infections.

[Daddysdaughter in reply to MelaniePaul]

How about just a cold iced tea? He cannot have anything cold.

[Hazard]

Hi Mel, i am in docetaxal and had real trouble with raste buds since 1st cycle. After 3rd cycle I started getting peripheral neuropathy in my feet which got progressively worse up to Cycle 5. Then I read on this forum that Vit B6 can help with neuropathy. So I have been taking a tablet 200mg per day since, and Cycle 7 was 2 days ago..

So far I am very happy. Neuropathy is much improved, it has receded from balls of my feet to my toes. And my taste buds feel normal again - I am not getting that weird metallic taste and I had a sip of red wine last night and could taste it!

My MO was very doubtful anout about B6. He said 'you can try it if you want'. But so far it seems to be working for me.

Good luck with next course of chemo.

[MelaniePaul in reply to Hazard]

Okay, great, I will get Vit b6 capsules and we will try 200 mg per day. It can't do any harm and if it works for Paul too that would be great! Thanks for that, Mel.

[flyingphil]

Ice WORKS ... fingers, toes and tongue < * * >

[Hidden]

Hi Mel.. good he’s home. Needs to eat.Ive not had the pleasure of chemo yet. Praying that you both find some solace in the midst of all of this suffering. God be with you both in this ordeal .. Peace. I’m

[Mathes72]

Had lost taste an hair,both came back after chemo ended,I just lived with it

[JamesAtlanta]

I had an awful metallic taste when I drank certain beverages. Someone told me to drink SmartWater. I had a hard time believing waters would taste differently during chemo. But it actually tasted much better than other bottled waters. No idea why.

Food lost its taste almost completely. I’m lucky I don’t have a sodium problem, so I seasoned my food with extra salt, hot sauces, and other seasonings. Seemed to help. But thankfully my sense of taste came back once I stopped the chemo. I actually have a reduced sense of smell, post chemo...oh well😊

Best of luck to you and Paul!

James

[Ian2017]

I haven't had the same lasting effects. I lost some taste usually from day 3 to about day 10 after an infusion. However, I've found anything with ginger to be very palatable (cookies, soft drinks, etc) when nothing else tastes good.

[ontheroad589]

Hey Mel,

I have the same issues - and it is very frustrating to those of us that need to eat and are suffering from this same thing. I have tried the ice chips, ice cold beverages, B6- nothing seems to work except waiting it out. I am following this thread to see if anything new and novel comes up - but the symptom sucks and it is one of the worst parts of the chemo experience....like constipation and bone pain.

Greg

[Stegosaurus37]

Docetaxcil destroyed my tastebuds.. I cold still taste coffee, peanut butter cookies and diet soda pop. Most other stuff tasted like cardboard. And not very good cardboard. As one who loves to cook, this was a real hit. The good news: I've finished the six infusion round of docetaxcil and am now off chemo (2 weeks) and on Xtandi. And my tastebuds are completely back! So hang in there - the future will be bright gin!

[MelaniePaul]

Hi everyone.

Thank you all for your responses.

We will add more ginger to Paul's diet as well as vit B6; give it a go and see what happens.

We have always been aware that he could drink something cold or work with ice during the infusion. But, as I said, this is not really an option because as soon as Paul has something cold he gets a sore throat. This has always been the case so is not cancer-related.

We thought that the taste would come back at some stage. But now even after six weeks after his last infusion there is still very little taste.

Perhaps some of the medication Paul is on can cause this? - although his medication has not changed.

I guess we will just have to wait and see what happens.

If any of you have any more ideas please let us know.

Mel and Paul.

[tallguy2]

Thanks for this post and all the replies. I start Taxotere on May 14. I will stock up on vitamin B6 ahead of time.

[Chazem]

Same problem for me on day 3 or 4 of Doxetaxil. It got worse with each treatment along with neuropathy to my fingers and feet.

I was told beer and wine would taste bad and sure enough they tasted aweful. I was ok with a rum and coke for a while but that ended. Surprisingly gin and tonic ended up tasting pretty good, never liked gin before.

One constant was chocolate ice cream alone or as a shake made with an egg, 2 scoops of protein powder, a Boost or Premier Protein drink, and 2 scoops of chocolate ice cream since loss of appetite worsened with treatment. That helped get about 600 calories in.

Seems I progressively lost the will to eat since anything solid tasted like I had a piece of paper or cardboard on my tongue. You can feel texture like a cruchy chip but no taste.

3 months after stopping Doxetaxil taste returned slowly. By then I could drink white wine and now 8 months later light reds are ok but I still cannot appreciate a Pinto Noir.

Seems we are all different in our recovery.

FYI, 100 mg of B6 is the recommended dose. 200 mg will be toxic over time as per my Neurologist. Stay on B6 until the neuropathy clears up. I am on month 10, slow but steady. Thumbfirst, then fingers, then feet, then balls of my feet. I an down to the 3 middle toes now.

Wishing you the best.

Don't forget to get 2 liters of IV fluids on about days 4-6 after each chemo, and again 3-4 days later.

Your infusion center should be offering this. Your job is to keep the calories going in, theirs is to not let you get dehydrated.

[Chazem]

Dont trade calories for plain water. You need the calories. Each shot at eating is limited before you lose interest withoutthe taste.

[Chazem]

Set short term goals like the next basketball game or such.

This will help you get through the chemo and avoid the apathy feeling poorly for so long.

I was unlucky. If the side was there, I lived through it. Other have sailed through.

Oh yeah, American ginger capsules for some energy and CBD's for appetite.