#76460 07-03-2008 10:54 AM | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Hello all. I started my chemotherapy and radiation treatments on Monday and other than a slight reaction to the Erbitux, it went well. I did develop a sour stomach on Tuesday and some nausea yesterday which a dose of Zofran remedied. I have also developed an off taste in my mouth, which I'm guessing is from the Cisplatin, although I supposed could be either drug, but its making eating a challenge. I did just make a smoothie with Vanilla Soy ice cream, almond milk and whey protein which tastes fine, but I'd love to hear if others developed this and what foods were at least vaguely okay to eat. Thanks!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 wish I could say which foods are ok to eat but without teeth, all I would be doing is guessing. I blend all I try to eat and some are just give the burning sensation in the mouth are too hot to handle. I had the Erbitux along with Chemo , but I had no side affects. Good luck as you go thru it. I want some teeth. LOL
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 | Margaret,
I can't tell by your posts if you aren't able to eat or you have just developed a taste issue? If you are able to eat then eat and eat and eat all your favorite things now as there will be plenty time for those damn liquid drinks. If you can't eat and must rely on liquids then drink or pour down that Peg whatever pleases you. If or when nutrition becomes an issue then consider drinks with the most bang for the oz which Carnation Instant Breakfast VHC still sits at the top with 560 cals in an 8 oz can. I didn't develop taste issues until about my 3 week of radiation and then everything went south for about 7 weeks.
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I can eat but this off-taste in my mouth (bitter and metallic) is making my favorite foods taste awful. That and the lingering nausea are making eating a challenge. I just went to Whole Foods Market and bought a bunch of different things to nibble on, I'm hoping something will appeal to me.
Last edited by margaret_in_ma; 07-03-2008 05:29 PM.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Margaret:
Sorry to hear your taste is not what it was. That will happen when going thru chemo/radiation, and it really stinks!!!! Unfortunately, it will probably get alot worse than it is now. Eat as much nutritious foods as you can. If you can handle pizza, meats, mexican food, eat them now cuz it might be a while before you are able to eat like you did prior to being treated.
Have you tried eating with plastic utensils? Easy foods to try if your mouth is bothering you are yogurt, puddings, soup (some are easier than others), canned peaches. I also drank alot of yoo-hoo and chocolate milk during my treatments. Even with having a PEG, keep trying to eat and swallow daily or you can have difficulty down the road.
Best of luck to you,
Christine
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I had Cisplatin and my body was a haxardous waste dump for some time. Not only did everything taste metallic but I had a very chemical smelling body odor. It all passed about a month after my last infusion. It might help to insure that you are well hydrated and you should drink 2-3 liters of water a day. Cisplatin needs to be flushed from your system. It can cause kidney damage if you don't stay hydrated.
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 | It must be our fate to have the metallic taste. I thought I imagined it . Now I know better. Thank you all.
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 would continue to eat solid foods and my sinful favorites would top the list. The taste is the first to go and that's difficult to deal with but when the dry mouth starts and the swallowing difficulty begins, it really gets tough and you're limited to a liquid diet so that's why we are stressing the solid foods now while you can. Forget the taste and just enjoy the solid stuff. A month from now you'll thank us.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David, for a CPA you give some good advice . LOL Right on my man.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Gary,
You are dead-on right about the hazardous waste dump! Its amazing the quantity of crud that's run through our veins. And then all the drugs to mitigate the side effects of those drugs, and so on and so on! I am a little surprised at how quickly the cisplatin affected my taste buds. I am staying hydrated - thanks for the reminder though.
David,
My point in posting was that I am trying to eat solid foods, just having trouble figuring out what's going to be tolerable and not upset my stomach. I'm muddling through it as best I can - at any rate, in a couple of weeks it'll all be moot anyway.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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