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#60412 03-03-2007 10:08 AM
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pat60 Offline OP
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Hi,

When can I expect to have the full return of my taste sensation. I am relieved to have lost that burned metal and skin taste from my mouth but would like to know when I can expect to more fully experience a full spectrum of taste. I am finally eating again and taste is such a nice part of eating!!!

Thanks for your help

Pat

#60413 03-03-2007 12:42 PM
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Pat,

It helps to know more about your Tx (most of us add it to our signature line) but I will assume you had no tongue surgery and you had 6 to 7 weeks of IMRT. If that doesn't describe you forget what I am about to say and tell us what you went through. Also understand that even if it describes you, you may recover differently.

I first began to taste bitter and then my taste totally went away except for some sweetness. I pretty much never lost the sweetness taste and it still continues to be the best taste I have. About 3 weeks after Tx I began to eat things like mashed potatoes w/ gravey and mac n cheese and I could taste it perfectly for the first bite or 2. That pretty much described my taste for the first 4 months post Tx. I could taste everything but it didn't last past the initial trip across my tongue. Suddenly in the first week of my 5th month post Tx I began to taste the same tastes during almost the entire meal. Again, I could taste everything but now I was able to taste them for longer periods during the meal. I also noticeda slight improvement in my saliva production which may have had something to do with the improvement. Even though it was a slight change it really had a positive impact on my eating enjoyment. Literally overnight I went from dreading mealtimes to almost looking forward to them. I started trying things that I had given up on in the Tx which helped create a little excitement back in my food life.

I am now 6 months post Tx and that hasn't changed.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#60414 03-03-2007 02:58 PM
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Pat,

I have come to learn that the taste bud issues are quite tricky and that everyone reacts and recovers differently. I tried my best to get my RO to tell me how long out of commission without much luck. That seems to be a question that they don't like to be faced with. The only thing he would tell me was that "on average" it takes between 2 and 10 months following treatment to get the buds back. He also made it a point to say that in some cases they may not ever fully return for certain food tastes. That is the part he hated to have to tell me.

Personally, I am just over 7 months post Tx and I can tell some improvement but nowhere near full recovery. It seems that I pick up a sweet taste with any type of bread product as well as anything made with corn or corn itself. Imagine Fritos tasting sweet but they do to me. On the other hand, I can't seem to get enough salt taste no matter how much I salt something. Most desserts I can't tolerate after having a major sweet tooth for my first 59 years. I find that one of the few sweet treats I am able to tolerate is Skittles and I can really put them away!

I'm still looking back to that "2 to 10 month" feature told by my RO. I am just looking forward now to the 10 month point and hope I make it. On the other hand, you may have completely different results and hopefully you will get taste back sooner.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#60415 03-03-2007 11:59 PM
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Pat - My son is just oveer 2 months post treatment and can taste most everything but can't tolerate anything salty which is exactly the opposite of Bill's reaction to salt! I have to leave out salt and any kind of seasoning with salt in it when I cook for him. Also he doesn't like anything sweet - even fruit doesn't taste right to him, but he does eat lots of vegetables and salads. No chocolate, no ice cream, etc. He says that honey tastes like mud. I'll have to try Skittles on him!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#60416 03-04-2007 02:48 AM
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Pat
I am 4 weeks out of tx, and at first, nothing had taste. In the past two weeks that has really changed except for sweets. I used to have hot tea with 3 big scoops of sugar (YUM). Can't even taste the sugar now - which is good, I guess, since I have to worry about my radiated teeth. I guess we just have to be patient and thankful for the things we CAN taste.
Sue


Susan Holsberg
ssc r maxilla r partial maxillectomy 9/25 brachytherapy 12/7
28 imrt 12/27 erbitux 12/20 recurrance 5/07 total maxillectomy
keeping my fingers crossed
#60417 03-14-2007 12:28 PM
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pat60 Offline OP
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Thank you for your help. I had all but the last six of radiation, I got deathly ill and we had to stop. I am hoping that it will not work against me, I ended up with two treatments of cysplaten and 29 imrt treatments. I am finally feeling stronger everyday and not weaker, which is very comforting.

Thanks
Pat

#60418 03-15-2007 11:31 AM
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I'm 14 months out of radiation and still have weak tasting, esp for sweet stuf. Initially out of radiation, I was very sensitive to salt.

What's strange is that now the first bite or two may have taste, but then it seems to fade and become almost tasteless (at least it's not fading to 'metallic'<g>).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
#60419 03-16-2007 03:21 AM
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Pat,
I'm almost 3 months out and I have just begun eating in the last 2 weeks. Not enough to get the PEG tube out, but I'm trying. I'm eating soft stuff and TV dinners, I had to get low sodium because everything tasted really salty. My sweet taste is weak to non-existant. I've had to learn the hard way to chew my food more than I used to do. I have swallowed some stuff that felt like a cactus going down and it inflamed my throat all over again. It's tough, but hang in there!


58 yrs old. Stage 4 SCC base of tongue T4N2M0 no surgery chemo 7x radiation 35x completed treatments 12/20/06

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