| | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Reading this thread gives me a grin. I never got either the PEG or the Metallic taste, I just lost my entire sense of taste completely; exactly like there was a switch in the line between the taste sensor and the brain; and someone abruptly turned that to "Off." That was sometime in Sept, '09.
There was one plus to this, I was given a case of Jevity (the liquid nutritional mix given through a PEG) which I doubt I could have tolerated due to the taste, which fortuitously for me, was not an issue at the time.
In the year that I had no recurrences, taste returned somewhat, starting with Chocolate (which has faded in and out over the time since my first recurrence in Feb, '11) I attribute this to the large amount of chemo I got in those following years up to mid-'13 when Xeloda (5FU) stopped working for me.
Oddly enough, while I could taste chocolate in food or drink, eating a chocolate bar was like eating wax. Milkshakes, on the other hand, yummmmmm...!
In the last year, I had only radiation and my taste returned to something >90%. Some meats lose their taste after a number of bites and some foods seem to have permanently altered tastes, but by and large, I'm as close to "Normal" as I ever was wrt taste.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | 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 had a PEG but I remember a couple of weeks after rad began my taste went yuck. Nothing tasted the same or even edible for the most part. Eventually just about all my taste was gone except some sweetness which to this day remains my strongest taste.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2014 Posts: 22 Member | | OP Member
Joined: May 2014 Posts: 22 | I seem to not be able to swallow at all now. Taking the mouthwash and liquid pain killer does not much help. Going to 5 cans of food a day thru peg. Is that too much a day? It is becoming a every two hour process. I guess getting weighed to today will tell. As long as I don't swallow the day goes by ok. The roof and back of throat stays raw. Chemo and radiation today. I have some things to ask my dr. Cheers | | | | | Joined: May 2014 Posts: 22 Member | | OP Member
Joined: May 2014 Posts: 22 | Thanks so much!!!  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Vernon,
Can you add a Signature Line so posters can better address their remarks?
Please continue to use your swallowing muscles each and every day. Those muscles quickly forget their purpose.
Where in Va are you?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: 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 | Ive resent you the PM with info on how to make a signature.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Vernon... is your not able to swallow related to pain? If so try using the magic mouthwash to numb then sip water, or something (ensure) 5 feeds a day is great. If you want to try running a couple overnight on a slow drip then it may take away being hooked up every few hours during the day and give you more freedom. (you could probably fit it about 4-5 cans in one bag and just let it run very slowly)
You should continue to try and swallow even just a little fluid. I get that it's painful but suck it up and do even a little - radiation burns the crap out of your throat etc... you do not want the muscles in your neck to atrophy and to be stuck on a peg for life. This can happen. So it is important to maintain the swallowing reflex.. Hugs and keep on pushing through. The end will come soon enough.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: May 2014 Posts: 22 Member | | OP Member
Joined: May 2014 Posts: 22 | We live in the Tidewater part of Virginia. York County
Thanks and sorry for not adding a signature to the post. | | | | | Joined: May 2014 Posts: 22 Member | | OP Member
Joined: May 2014 Posts: 22 | Thanks The Dr gave some better pain medicine and I was able to drink and eat some food today. Lost 4 pound from last week. If 5 cans is the need then That what will happen. 3 chemos and 17 radiations to go. I won a drawing for free Jimmy Buffett tickets for this Saturday night in VA Beach Va. Things are going great!!! | | | | | Joined: May 2014 Posts: 22 Member | | OP Member
Joined: May 2014 Posts: 22 | Thanks The way I am trying to work this out is it is just a few weeks stop thinking about so much about what you don't have and more about what you do have. The hair started coming out on sat and I got my daughter to shave it off. When I went to Chemo today I felt more like the family
of fighters. Thanks | | |
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