#58917 10-16-2006 02:32 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) |  "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Bill D,
Taste buds can take awhile to get back to normal, but don't give up hope. Since I had conventional radiation (rather than IMRT), it took me quite some time, but I got back to the point of enjoying Mexican food and certain kinds of spicy Asian foods again. Also, the taste for sweets definitely came back -- I have to ration my desserts to keep from putting on weight.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#58933 09-19-2006 10:51 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Ian, thank you for posting!!! awesome to hear you are a 46 year survivor! God Bless, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#58934 09-19-2006 02:52 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Ian, your post was a great boost to alot of people-thanks. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#58935 09-26-2006 03:17 PM | Joined: Aug 2006 Posts: 5 Member | | Member
Joined: Aug 2006 Posts: 5 | I am 5 years out and I can recall it took about six months for most tastes to return to normal. The salivary glands were suppressed by the rediation and did not fully recover. I have found Biotene mouth products to be a great help to me. | | |
#58936 09-28-2006 02:09 PM | 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 am only 1 month out of 3 Cisplatins with concurrent 35 IMRT rads. I have hardly any taste but can smell it a mile away (bummer). I have found a great product though...Carnation Instant Breakfast VHC. It has a whopping 560 cal in 8oz and tastes just like Ensure Plus. I don't like either but now I only have to swallow 5 VHC's to get the same 2800 cals as in 8 Plus'. I have gained 5 of the 30 pounds I lost and I didn't have a tube (wished I did).
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.
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#58937 09-30-2006 01:52 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Ian,
46 years! That is certainly the longest survivor I've heard of. And it is a great boost to me, thanks.
Tim Stoj
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#58938 09-30-2006 07:48 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Ian, I will have to set an old age survival record to equal your impressive 46 years. Your post is like a breath of fresh air here!
With regard to your lack of taste, how is your sense of smell? I ask because two people I know have for different reasons lost most sense of smell, and with it their sense of taste, and in some instances things they can taste are so altered as to be almost inedible. | | |
#58939 10-01-2006 03:22 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Joanna,
The 2 folks you know, who lost sense of smell/taste...are they OC survivors who had radiation treatment?
Tim Stoj
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#58940 10-01-2006 07:57 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | No, Tim,loss of smell was due to different reasons. No rad involved. | | |
#58941 10-01-2006 08:17 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Over 4 months from tx now and still not much improvement. I tried a donut this morning and on top of being really dry, it tasted like rancid grease. And I used to love donuts. Oh, well, I was 30lbs overweight with high blood pressure & cholesteral before this all started. I was probably headed for cardio vascular problems. Now I'm nice and slim and I'll have to find a new priority other than eating. One of the most annoying side effects of rad is the plugged & clicking ear syndrome.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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