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Is return of taste associated with return of saliva?

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

Has anyone who has gotten their taste back early gotten most or all of their saliva back? My taste is largely back at just 4 weeks out from treatment, but I still have dry mouth. But I'm wondering since I have a lot of taste back so soon if I can also expect to get all or most of my saliva back as well? My doctor said taste is connected with salivary function so this does bode well, and I may get all of everything back eventually. But I wanted to hear about people's experiences.

CivilMatt's picture
CivilMatt
Posts: 3092
Joined: May 2012

Cadharose,

Hmmmm, hear about peoples experience with taste and saliva returning.   Well, at 16 months post it is light years better than at the start, but nowhere near the former spitting and tasting I took for granted.

I taste everything a little and some things a lot, I haven’t been able to get a handle on it so I am constantly surprised.

Saliva is much, much better (two much better not too much better).  I can answer a phone or even run to the store without my water bottle, but I keep it handy and still drink 10 glasses a day and it is not unusual to drink 3 glasses with a meal.

You my dear sound fortunate and I expect you to enjoy it.  Body parts do not seem to like the rads so if your taste buds dodged the bullet maybe your saliva glands did too.

Best always,

Matt

TracyLynn72's picture
TracyLynn72
Posts: 747
Joined: May 2013

I never had dry mouth but I sure did lose my taste buds!  I have had excess saliva during the whole treatment process, tended to drool quite a bit.  I'm getting my taste buds back slowly right now and I'm a month out of treatment.  Ice cream, donuts, candy, cookies and all of that yummy stuff tastes HORRIBLE to me right now.  I'm loving fruits, veggies and meat.  Salads especially.  Maybe this will be a good change for me?

fishmanpa's picture
fishmanpa
Posts: 1134
Joined: Jan 2013

At 12 weeks post I still have no saliva. I wake up sometimes with a thick coat in my mouth and an occasional squirt from the right side (mets and surgery on the left) but it dries up within an hour.

Taste on the other hand is 100% I never lost it. Docs shrug their shoulders and chant the "everyone's different" mantra. Some things were a little "off" but everything is 100% in the taste department. 

I'd gladly trade some taste for some saliva but my body isn't interested...

"T"

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Still sitting at maybe 30 to 40% if my saliva back and have to use water to get food down....tho I can taste a lot of things....it's not the same as before.  Morning is the dryest.....but I still need to sip water when I eat most things.  Sweet is a long ways off taste wise....and meat is a long ways off saliva wise.

The good news is.....even after a year out from rads, and 11 months out of chemo, I'm still getting improvements.

donfoo's picture
donfoo
Posts: 1329
Joined: Dec 2012

Hi,

I'm just a few weeks ahead of you at 7 weeks post. During TX my taste was at maybe 20% of normal, accurate but muted. Saliva was about 50%. By 3 weeks post,  all my taste returned fully and accurately. I even posted about "hyper taste" as all tastes and flavors seemed very heightened. Anything processed, anything with anything more than the tiniest amount of salt or spices (flavor and hot) would be irritants rather than enhancers. Saliva was about 75%.

The past weeks 4-6, tastes are fine except spicyness. It is just slightly improving but anything labeled "mild" still is a slight challenge. Saliva functions are fully back at 100%, well 97%. The only thing I ate that threw me for a loop was a very flaky pastry and one bite into that had me running for a glass of water. Milk is my friend still with respect to consuming anything spicy, just to cool my mouth, not as a sub for saliva.

My tongue is still sensitive to some things like regular toothpaste. I switched to Biotine but recently went back to standard stuff and it sends a slight tingle on the tongue.

My own take on predicitng the return on taste and saliva is to analyze where your tumor(s) were and the rad maps and procedures during radiation. These have a great impact on time to restore these functions. In my case, all the cancer was on one side so they painted the entire other (clean) side with 5300 grays during the 35 treatments. The areas where the BOT (primary) was located and the few nodes were dosed much higher (6500, 7200 i think) but with wonderful contouring given the most current technologies (hardware and software) plus a VERY experienced RO/nuclear staff (dossimetrist, physicist, etc.). I also explictly questioned the RO about being careful around the parotids and I suspect at least subconsciously he and the dossimetrist were careful while developing that part of the map. Who knows, this may all be just figments of my imagination but you know what I strongly believe in mind over matter, so even if it is all made up, I believed and I am golden in the taste department! good luck, don

ps - I am a real foodie and do lament the inability to take much spice. So many menus and dishes are still off limits and I have not adjusted my huge stack of favorites to include much more subtle and easy on the palette substitutes.

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Three years out. My taste has returned as much as I expect it ever will. I still have no spit, no snot and no tears.  On the other hand, I did get the maximum dose of radiation to both sides of my face and neck and upper chest, owing to base of tongue SCC with mets to multiple lymph nodes on both sides.

Deb

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