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#57341 11-22-2005 05:53 PM
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Tom J Offline OP
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Did any of you lose your sense of taste or smell from chemo or radiation? I lost both and have not yet gotten them back. It is now over two years post radiation/chemo, and although I am feeling good, good energy, strength returning, etc., my senses of taste and smell are still missing. I did have a ton of radiation (60 treatments) and buckets of chemo. Still, I had hoped to get smell/taste back, but didn't. The neuropathy is not all gone yet either, numbness in feet and hands still lingering. Anyone else have this experience? Did you lose yours for a bit and then get it back? Curious. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#57342 11-23-2005 01:15 AM
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Hi Tom,
Like you, I had no surgery. I had 2 Cisplatin infusions and the maximum amount of radiation including the boost but had 35 fractions (rather than 60 - I take it you were getting 2 a day?). I have regained my sense of taste, salivary function etc., swallowing is as close to normal as I can remember. They seem a little surprised everytime they ask me about my taste buds and I tell them that everything tastes pretty much as it did. I did have IMRT so I suspect that played a role. I never had problems with sense of smell. The taste buds started to return to normal a few months after radiation ended. It took 6 months+ for full recovery. Salivary function took a year and a half. I haven't had problems with nueropathy. Some chemo cocktails can exacerbate that I am told.


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)
#57343 11-23-2005 02:40 AM
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Hi Tom,

There was an article in teh Washington Post Health section a few weeks back about a person who was born with no sense of smell (and hence, little taste). That article prompted a series of letters back from people who had lost their senses of smell and taste, and many had found some relief. There were several who said they took zinc supplements and this helped; some studies have shown Zn to be crucial to certain enzymes associated with taste and that Zn in "excess of normal requirements" helped restore taste to radiation patients. Another person wrote that he had been helped, after years of problems, by acupuncture -- and after only a few treatments. So you might consider trying these remedies. Acupuncture is also supposed to help with neuropathy -- your doctors may be able to recommend an acupuncture center or clinic.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#57344 11-23-2005 08:03 AM
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I have had decreased taste and smell from my IMRT radiation. I would say I am about 50% which is now 1.5 years from treatment. The taste ranges with the type of foods but I don't seem to get that extra flavor of most foods I use to get. My smell was only about 60% before so I was use to that, but the smell even has gotten worse too?


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
#57345 12-10-2005 01:42 PM
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My ENT mentioned that I might permanently lose some tasting, esp relatively dry foods like a steak -- The problem is that without enuf saliva to move the taste and smell particles around and receive/assess them, things will be relatively flat, which makes a lot of sense to me.

Based on the above, plus the apparent link to alcohol and SCC, I have decided to trash my plan to become a professional winetaster wink

Pete


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.
#57346 12-10-2005 04:40 PM
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I definitely have an imparied sense of taste (but I'm only 6 mos from the end of rad.) but I have found that my sense of smell, which was always on the sensitive side has gotten even MORE sensitive. I can't taste choclate right but it smells better than ever (and no calories when I smell it!)


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57347 12-10-2005 05:32 PM
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Good descision on your choice of future vocation Pete!
Two years out my hubby is eating and enjoying most food groups with the help of a lot of water.
His taste is questionable.... so I have to be cautious when he cooks, he can be a bit heavy on the flavors!!

Cheers
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#57348 12-11-2005 06:27 AM
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I also have an impaired sense of taste. I've been done with radiation and chemo since early January. I think it's come back as much as it's going to. Like Nelie, my sense of smell is very sensitive. During radiation was when I really noticed. Even as my taste has returned to a certain degree, my sense of smell is stronger than it ever has been.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#57349 12-17-2005 03:08 AM
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I was told I could loose my sense of taste but I was lucky and it didn't change one little bit but I am still having problems eating spicy foods and fizzy type drinks. It's not that I can't eat or drink them but if I do I know about it for maybe a week or so afterwards, they make my throat feel so strange and so that then in turn makes me worry that the cancer has returned. On my last check up I asked one of the cancer nurses whether eating and drinking that sort of thing could do any sort of damage or cause the cancer to come back. She said that it wouldn't do any harm at all just be uncomfortable for me and my throat reacts that way because it's still healing from the radiotherapy and it could take many months before it's completely healed. Sorry if this has drifted off the original topic... uksweetheart

#57350 12-17-2005 06:48 AM
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I found that after my radiation and chemo, I couldn't eat anything that had any type of spice to it. I definitely don't drink carbonated drinks any longer. I did after my surgery and prior to my radiation and chemo. Just can't handle them now for some reason. And I finished my tratments in January of this year. I've said this before, but in a lot of ways, I eat healthier now than I did before all of my problems started. I've been able to put some weight back on as well. Slowly, but puttin it on none the less.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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