| | Joined: Feb 2011 Posts: 6 Member | OP  Member
Joined: Feb 2011 Posts: 6 | AM curious if taste buds return after 35 radiation txs. & 7 chemo. I have initial taste but quickly wanes.
35 radiation txs. 7 cistplatin. SCC on tonsil and 2 possible nodes. 14 months out and holding the line. Just graduated to ENT visits every other month.
Life just seems to keep on happening with or without you.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Chris - my son tells me that his taste buds returned to about 90%. He had 28 Rad tx and no chemo.
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.)
| | | | | 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 | It can take up to 24 months for a full recovery. Ive even heard of members seeing an improvement at 2 1/2 years post radiation. Best of luck with your recovery.
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: Feb 2011 Posts: 6 Member | | OP Member
Joined: Feb 2011 Posts: 6 | thank you, the forum is great. I just discovered it today. I've been on this lonely journey for the past year, but now feel like I've found a watering hole to other kindred spirits.
The best to you and your recovery
35 radiation txs. 7 cistplatin. SCC on tonsil and 2 possible nodes. 14 months out and holding the line. Just graduated to ENT visits every other month.
Life just seems to keep on happening with or without you.
| | | | | 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 | Im glad you have found OCF. Now you will not ever be alone with this again. We all help each other with info and support. There is also tons of info with a search function on the main OCF pages.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Chris. My husband will be out of treatment 2 years in April. He said his taste has returned about 70%. He also had 35 radiation treatments and 7 Cisplatin. Welcome to the forum.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | I had approx. 30 rads and 2 rounds of cisplatin and I can taste certain things better than others. I am only about 2 months or so out though but can taste mushrooms, oysters , pot pie, and coconut so far. But it seems that stuff like chocolate, mashed potatoes, and mac n cheese taste like cardboard. I do as others have told me and just keep trying things til I find what works for me.
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Sep 2010 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2010 Posts: 71 | I assumed it was the radiation that messed with taste...must be chemo as much or more than radiation. I only had radiation and always had chocolate taste. Mashed potatoes are good again as are things that are moist. The dry things (crackers, bread, chicken breasts, etc.) are all cardboardy for me.
Michele in IL
Female - 53 no smoke/drink
tongue Biopsy 8/2010
Surgery 9/21 for SCC left side tongue stage II. Prtl removal tongue/left side lymph nodes. All Clear
Radiation started 11/2, ended 12/17
Lymph node involved left side along with gum involvement 2/9 Fibular flap failed 2/22.
passed away 1/12/12
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Chris,
I'm coming up to six months post treatment and about 60% my taste is back. I can eat almost everything (with water to wash down) except for chilli and tomatoes still makes my mouth break out in sores. I cant taste sweet things yet but i eat a tonne of ice-cream - its like i'm remembering the taste when i eat it. My taste does seem to come and go, some days i can taste more and others not so much. Its a long journey my friend and i guess we just have to be patient. Good luck.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | Hey Chris, the short answer is yes your taste buds will come back. How much and how soon is a little bit of a moving target but the board rule-of-thumb is that you should notice most of your taste back at about the one year mark. Mine were steadily improving up to about the two year mark, and my saliva production seems to have settled out after 3 years.
The being said, We all get blasted in different areas and have different reactions.
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | Each of us can be different but for me I didn't notice a real big improvement until 15 months post Tx. IMO the 2 year mark is more realistic to measure your recovery in taste, dry mouth and just about everything else rather than 1 year.
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: Feb 2011 Posts: 6 Member | | OP Member
Joined: Feb 2011 Posts: 6 | I thank all of you for your encouraging words. The event of oral cancer is so overwhelming and to hear from others who have made the journey provides a glimmer of light to an unknown reality.
My best to you,
Chris
35 radiation txs. 7 cistplatin. SCC on tonsil and 2 possible nodes. 14 months out and holding the line. Just graduated to ENT visits every other month.
Life just seems to keep on happening with or without you.
| | | | | 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 am on my 4th year soon and I only have a taste for the 1st food that enters my mouth. Then after it could be cardboard or mud. No taste and that damn burning of the mouth.
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: Mar 2010 Posts: 4 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: Mar 2010 Posts: 4 | Hey Chris,
This probably won't answer your question but it's my story and you may glean something from it. I'm 65 and suspect that you are somewhat younger. Best wishes!
Squamous cell carcinoma, primary site, tonsil.
I began looking for sympathy and solutions but it appears that each of us is uniquely different in respect to results of our treatments. Many of you have problems much greater than mine.
I had a radical neck dissection and 35 RT�s, the maximum in this jurisdiction
My wife insists that the issues are all in my mind. Regardless, I have virtually no saliva, taste buds are wacked, teeth are gone, gums won�t properly support dentures, sinuses are chronically infected, lower jaw is dead and won�t support implants.
(My �buds� went south after about 12 exposures.)
I weighed 212 lbs going in. My current weight is 142. I have lived for nearly 12 years on liquid meal supplements and fresh juice, every day. I also take an herbal tea, daily but am unable to identify it due to forum rules. Blood tests indicate no disturbing inequities.
The biggest problems relate to lack of stomach capacity and after 11 plus years of boost, I don�t look forward to the necessary, daily nourishment. Additionally, the buds come and go. Meat is consistently bad while veggies and spices are OK one day and horrid the next. Fortunately, fruits are almost always acceptable. Lack of cleansing saliva doesn�t clear tastes so they tend to �pile on� and confuse the palate. The use of water, wine or other liquids has not been successful in aiding this problem.
Does anyone have experience with psychiatric treatments for similar issues?
Any suggestions would be greatly appreciated!
Life is what occurs while we are making other plans!
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