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#171910 10-01-2013 09:00 PM
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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
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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
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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!


Christine
SCC 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 smile
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[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
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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






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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.
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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
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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!!!


Christine
SCC 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 smile
Joined: Aug 2011
Posts: 269
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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. frown
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!
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Posts: 421
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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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