Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Losing taste buds

England88
Posted by

Hello All,

My partner Gavin has been having pembrolizumab for malignant Stage 4 melanoma in his wind pipe and his lung and in some lumph nodes. he is having a lack of taste and its causing him great problems. apart from that the pembo seems to be working but he is only his fourth treatment. can anyone suggest what to do regarding lack of taste. Any help with it all would really be appreciated. 

Thank you Louise

KTatHome
Posted by

Hello Louise (), I’m no medic and although I’m on my 44th dose of Pembrolizumab I haven’t had a lack of taste problem, but I had a look in the info and support pages and have put a few links below. 

I remember being told to avoid spicy food due to diarrhoea as a possible side effect, and not to eat grapefruit (but the grapefruit thing might be when I was on Dabrafenib). Pembrolizumab side effects list dry mouth as a possible side effect which might then affect taste, I’ve put the link in so you can see they recommend (gravy’s and sauces, pineapple chunks to create more saliva) I’ve put a link in to some Macmillan support pages that I thought looked useful incase you hadn’t come across them.

https://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle/healthy-eating

https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/eating-problems/changes-in-taste.html

https://www.macmillan.org.uk/information-and-support/treating/targeted-biological-therapies/find-your-therapy/pembrolizumab.html 

The ask a dietician question is closed but you could look at past questions or phone the Macmillan support line.

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_dietitian/discussions

I hope some of this is useful but if someone has first hand experience I know you’d like to hear from them. 

I hope your coping ok as well as Gavin. 

KT 

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Katybb
Posted by

Hi Louise,

Im on Pembro and been getting dry mouth. I keep reporting it before treatment, but they don’t seem very bothered and just check I’ve not been getting sores or ulcers. I don’t think it’s affected my ability to taste, but I am waking up with my mouth glued together and my tongue more often than not has a lovely yellow coating!

I’ve got a dentist appointment this week, so hopefully they’ll be more interested. I’ll let you know if they have any helpful suggestions.

Best wishes, Kate

Kate

debs45
Posted by


Hi

As far as I’m aware not much can change the altered taste buds. It also happens with chemo and doesn’t usually resolve until treatment finishes.

For dry mouth artificial saliva spray or something called gel clair can help keep your mouth moist. Also pineapple has an enzyme in it that helps produce more saliva so worth giving that a try too.

hope this helps

D :-)

debs45
Posted by

Also if tongue is coated just check with doctor/dentist whether it’s thrush as nystatin might be worth trying. It’s a common problem. 

Sailor2
Posted by

Hi Katybb,

At Christmas I recieved a ridiculously expensive Phillips Sonicare Diamond Clean tooth brush. I've used electric toothbrushes for years, but with this one its like I've just come out of the dentist after a polish.

Everyone needs a treat now and then, so its something to think about!

J

 

Don't wait for your ship to come in, swim out and find it!

debs45
Posted by

Hi Katybb

Forgot to say gelclair is more for painful mouths usually ulcerated so saliva spray regularly can help relieve dry mouth and of course pineapple! 

D :-)

England88
Posted by

Hi Katybb

Thank you so much. he is really suffering now with I think Oral Thrush i just checked his mouth as he has complained about a sore tongue dry mouth and losing taste buds but maybe it was oral thrush developing all the time. not sure. i will buy pineapple tomorrow and he will go and get some nystatin from the doc. I did also find gelcair i think we will get that too.

Thank you

Louise

debs45
Posted by

Hi Louise,

Sorry I meant to address my replies to you as well as Katybb!

i would hold off pineapple if he has a sore mouth for the time being. 

Gelclair is more for ulcerated mouth and inflammation rather than sore dry tongue. It will be worth checking to see if it is thrush so perhaps oncology doctor can check that before prescribing nystatin. 
Saliva spray will be via prescription too so it can help dry mouth but doesn’t coat the mouth for long. 

Hope it improves soon.

Debbie