| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sandi, I had regained alot of my taste by 9 months after radiation and chemo. I am now about 21 months post rad and chemo and have almost all my taste function back. Just remember we all heal and recover at different paces. Hang in there and tyr to relearn to swallow, it will be worth it.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Geez Christine, Imust be alone out here without taste buds LOL I'm gonna cry a few tears for me.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | My experience was about the same as Christine. It didn't all come back at once. Salty things were first and sweets were the last. They started coming back about 3 months post Tx and were fairly normal after a year. Sweets took a little longer.
It is pretty wierd being able to smell one thing and taste another. I never got used to that.
Sadly in some cases the taste buds don't return, but that is far less common.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I still don't have the taste buds but never did lose my sense of smell. In fact I think I smell more of all things than ever before OC. I wish I could taste more than salty because everything has the salty taste after the 1st bite.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I never experienced the salty phase and I really never lost my sweet taste except for fruits. Today my sweet taste is the strongest and thankfully all fruit taste returned to normal.
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.
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | As you can see, a wide range of experiences here. For me, I went through the phase of when I tried to taste something it was like I had jusrt bitten into something from the garbage heap. Then my sweet taste came back and iI could eat ice cteam, smoothies, stuff like that. Now, 18 mos post tx, I just had my 1st real meal of meatloaf and mashed potatoes and gravy. The main issue now is saliva. It took a lot of gravy to be able to eat that, but the gravy really tasted good. Some things, like cheese and the chicken in Taco Bell chicken tacos still taste terrible but it is coming back. Just keep lots of water on hand. Hang in and do the swallow therapy, it will be worth it in the long run. Btw, there have been times when I've gotten really depressed over this eating issue and thinking I would never again be able to enjoy food. Well now I'm starting to and it feels so good.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Oh yeah, that reminded me I never lost coffee taste and even though I couldn't drink hot coffee drinks, I was able to somewhat enjoy coffee flavored smoothies and milkshakes. Carnation also has an espresso flavor Instant Breakfast but you had to buy a multiflavor pack to get it. My sense of salt taste wasn't excessive. Like Deejer says, there will be a wdie range of experiences here so we all respond and heal differently to treatment. EZJim, I know that my sense of smell "stepped up" while my tatse buds were crashed.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 43 | The taste of things for me was one things that did resolve itself, the saliva has yet to return and this has been the most frustrating for me. Things for me also tasted terrible for the first while but over time and getting used to foods again they did get better. I was also stuck with a peg and the tube feedings and actually kept my peg for some time post TX until some of the taste swallowing issues subsided.
Keep at it and it will get better, rough go though.
Erik
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You have to work on the swallowing for your future life with eating and enjoying, I am just about 2 years out and I would just love to have a partial taste going for me. My smell has improved to better than it was before, umless things smell better because I ca't tatse or eat most normal foods. My taste, well, if 1 bite were a meal, I would be back to 220 lbs and not bouncig now at 170. Go for it and win. Just never give up trying.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | MArtin had the awful salty taste. Now 10 months post TX he tells me the taste is back 60%. His saliva is maybe 50% back so he has trouble with dense bready things and I have to add a sauce to most things. He cannot eat fruit yet, but everyday he improves. He has this perverse thing of taking a sip of my Dr Pepper, he says it's awful and explodes in his mouth, but he still is compelled to try a sip every time I leave a bottle. Weird.
It comes back slowly, but one day it taste sneaks up and you realise there is one flavour that tastes pleasant. For Martin it was custard with cinammon, which was the first nice food in months.
He also went through the one spoonful joyful taste and 2nd spoonful disappointing with no taste.
Be patient and good luck. Make sure you try and practice swallowing, even just sipping water (even if doesn't taste nice)
Cecilia
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
