| Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | My fried taste buds think that water tastes like pond scum...from some really vile saltwater pond.
My friends have been dropping off every different brand of water they can find in the hope that one will have a taste profile I can stand. Six-packs and cases of water are stacked on our kitchen counter and floor, each with one bottle missing.
It's making it impossible to get 64 oz of fluid a day, since the taste triggers nausea and retching.
Any suggestions for doctoring it up or alternate beverages that work during the late phase of chemorads?
Thanks for any and all ideas!
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Sep 2013 Posts: 20 Member | Member Joined: Sep 2013 Posts: 20 | Never had any direct experience with this kind of issue, but I have some ideas.
MiO water flavoring is ok. It comes in all sorts of flavors-- even a tea flavor (as the caffeine in real tea can dehydrate you.) Crystal light packets, too.
Do you *have* to drink just water? I would guess that you'd hate boost and ensure by now - but of course those are always good options. Juices of any flavor. Grape juice bottles are always given out when my husband gets his treatments. He doesn't want to eat or drink very many things, but he sure does like his welches grape juice now.
CG to husband- 1/2013 lymphoplasmacytic lymphoma found 5/2013 1st round chemo stopped due to hole in hard palate. 6/2013 SCC found in maxillary sinus/hard palate. 7/2013 Removed tumor from palate + neck dissection T3NO. Has palatal obturator. Both smokers. Both want to quit. Will be done with 35 rounds of radiation + chemo + erbitux by October 10. Hemoglobin count up from 3 to 13! Lymphoma under control
| | | | 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 | Radiation is going to alter the taste of almost everything for at least the next several weeks. Hang in there and force yourself to hold your nose and drink even with it tasting bad.
Fruit juices can be very acidic and burn your mouth while going thru rads. You probably wouldnt to want to irritate your mouth with them right now.
Best wishes! 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: Jun 2013 Posts: 262 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | [quote=ChristineB]Radiation is going to alter the taste of almost everything for at least the next several weeks. Hang in there and force yourself to hold your nose and drink even with it tasting bad. [/quote]
Christine, I wish that I could! I can't keep it down. That's why I'm asking for other ideas.
Auditie, I haven't tried grape juice and will give that a shot. They hand it out at my radiation dept. and I'll look for it. I'll also look for MiO -- I'm not familiar with that, is it a mix-in?
Thank you Christine and Auditie for your ideas!
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It could be from chemo just as well, and reason we have a metallic taste in the mouth is the body recognizing chemo is a poison, and one of the functions of the tongue, bitterness, is to detect poisons. Maybe try using a water filter to take out most metals, chemicals. Scapegoating by drinking, eating, sucking strong candy, before chemo and radiation, may help prevent learned smell and taste aversions, like with taste, nasuea, vomiting, with treatment. Stick to the familiar, not unfamiliar . Maybe overshadowing the water with something strong added, as mentioned, flavor enhancement by smelling calming oils like orange, citris, lavender, to evoke calm, pleasant memories, before drinking water may help with taste.
Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Try some of those new water additives I've seen advertised but for me when the radiation started to affect my taste it seemed that every new day brought changes. Today I could tolerate something and I would tell my wife to go but a case and tomorrow I couldn't stand the stuff! Just keep on trying and don't get discouraged because it's normal.
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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Have you tried squeezing some lemon into it?
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: 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 | Unfortunately your body needs lots of water to get thru this. Drinking juice is NOT the same as drinking water. I would have to say 99% of OC patients will experience some mouth sores making drinking juice impossible.
The mix-ins like Mio or grocery store brands would probably be the best solution to covering up the taste. With those flavor additives (hey are sold near the water bottles), you control how much to put in a little or alot which will change the taste to something you hopefully can tolerate.
David is right your sense of taste can change by the day. To me everything tasted like burnt charcoal and over salty, even water. I was lucky to have to peg tube so would put alot of extra water thru there so I didnt have to drink so much.
Please monitor your water intake very closely. OC patients can quickly become dehydrated which is a horrible experience to go thru. I spent several hospitalizations due to dehydration and malnutrition (and that was with a peg tube). I dont want to see anyone go down that same path as it can quickly get out of hand and you can become very ill.
Ask your doc for a prescription to get hydrated a few times per week in the chemo lab so you wont have to stress so much over your water intake. Its a good idea to have this as a standing order so its there if you need it down the line.
Good luck!!! 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: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Thank you very much for the post mamacita---you read my mind. We must be drinking from the same salty pond scum, sigh. I feel your pain. xo
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | When the chemo/rads kicked in I couldn't tolerate tap water any longer and many bottled waters left a lot to be desired. "Pond Scum" is a good description. We bought a Brita filter and that did the trick.
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
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