#29025 05-13-2007 02:05 AM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2007 Posts: 131 | Hi..My husband is in his 5th week now and basically drinks milk and takes Nutren by his feed tube. He saids everything tastes likes metal including water. Any suggestions as to what anyone has found tastes normal as this point??
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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#29026 05-13-2007 04:03 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | He's exactly where I think everyone else is/was at, nothing tastes normal.
For me nothing tasted like anything. Water, nuclear waste...woudn't have mattered. I couldn't have told the difference for weeks. When things started to taste like something again, everything tasted like rusty metal for a long time. It does come back, it just takes time Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#29027 05-13-2007 09:58 AM | Joined: Feb 2007 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2007 Posts: 61 | The only thing I enjoyed was my morning Starbuck Frappachino (the bottled vanilla). Someone on this forum mentioned it and I had one a day up until yesterday when I found chia ice tea tastes okay (4 weeks out from treatment). No food tasted normal, but I ate scrambled eggs almost every day, so they weren't gross.
SCC, right tonsil, T1N0MO, G3, HPV-33 positive, 7 wks IMRT 2/21/07-4/13/07, 48 year old female when diagnosed, non-smoker, weekend wine drinker, tumor and both tonsils removed. Ethyol for 3 weeks; no peg; only minimal longterm side effects
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#29028 05-13-2007 01:29 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | The only thing that Jack could taste during treatments was cream cheese. He added that scrambled eggs to give them some taste and that seemed okay. Nothing tastes normal it's more like which is the least offensive. It all came back though. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#29029 05-13-2007 02:50 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | I agree with Wayne about everything tasting terrible. I didn't have a PEG, so whatever I ate went past my taste buds, which were in bad shape most of the time. While I normally enjoy food, I got used to the fact that for several months I would hate mealtime -- it was simply the key to survival.
One of the things that motivated me was the fact that early on I told my RO I did not intend to lose any weight. (I had no idea how hard it was going to be to try to follow through on this, and as it turned out I lost a little over 10% of my pre-cancer weight.) I experimented with a great variety of soft and semi-liquid things and didn't really like any of them -- the metallic taste seemed to be everywhere. The important thing right now is for him to get his daily nutrition quota however he can -- the taste buds can't be allowed to interfere with that.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#29030 05-14-2007 02:43 AM | 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 didn't have the Peg and I lost 30% of my body weight and went to the ER 3 times during my ordeal with the last ER visit coming in week 2 Post Tx.
Like everyone else I hated to "eat" because nothing tasted the same. Some things tasted horrible. I was never a sweets eater before Tx but for some reason I never lost my taste for things that were really sweet. To this day, 8 months post Tx, sweets are my strongest taste but strangley enough that doesn't include fruits. I used to eat fruits all the time and now they still taste yuckey. Go figure.
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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#29031 05-14-2007 04:23 AM | Joined: Mar 2007 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2007 Posts: 26 | Wow David. You are exactly the opposite from me. I am 2 and 1/2 months post treatment and the only taste that has not come back is sweets. That's probably a good thing concerning my radiated teeth. Actually, I have switched from sweets to fruit.
11/28/2006. Left lateral tongue, partial glossectomy, T3, moderately differentiated. 12 lymph nodes from neck, all clear. IMRT, 30X, ended 02/21/2007.
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#29032 05-14-2007 06:12 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Someone suggested eating with plastic utensils to help get rid of the metallic taste. Give it a try.
I don't remember a metallic taste, but I do remember cardboard. Like Gary, I didn't have a peg so had to eat or drink it regardless of what it tasted like. I lived mostly on Ensure Plus, coffee or butter becan flavored, for about 6 weeks, mostly during radiation (no chemo). A couple of weeks after radiation I was eating things like cream soups or scrambled, soft boiled or poached eggs, cream of wheat cereal, etc and supplemented it with the Ensure Plus to get the maximum number of calories and protein per day. I needed 80 gm protein at 120lbs. Sweet was the last taste to come back and seemed to take forever, about 6 months, although I do remember eating French Toast with lots of butter and syrup fairly early. You just have to keep experimenting and not give up. It's might frustrating, but most of us get it all back, so sooner than others.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#29033 05-14-2007 07:38 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2007 Posts: 176 | I found that food that was salty, or that you would add salt to tasted less gross. I ate cottage cheese, ricotta, some scrambled eggs, etc. I found that I needed to add some grape, or apple juice to water to make it palpable. About 4-5 weeks post, I started eating very small bites of meat, and salmon. I found sweets the worst and the longest to get used to again.(I now seem to be making up for that). I also went without a peg and lost about 20-20% of body weight. Good luck. Rob
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit) 3-9-09 last of 30 HBO treatments.
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#29034 05-18-2007 01:41 PM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2007 Posts: 131 | Just an update, my husband is home for the weekend and wondered if we had baby carrots and yellow beans. I immediately went to the store and bought 5 cans of each. Whatever it takes to get through this thing. He is now eating oatmeal, milk, baby carrots and yellow beans of course almost pureed.
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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#29035 05-18-2007 03:11 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Carol, that's good news. Since you are pureeing the carrots and beans, how about serving them over angelhair pasta [cooked very soft and rinsed free of startch] for some extra bulk. If he can tolerate milk, cream added to the carrots would be a good sauce over the pasta.You might even be able to slip an egg into the sauce for protein Let's hope he keeps coming home asking for more stuff to try  Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#29036 05-19-2007 10:42 AM | 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 | Mom,
Be careful about buying in bulk when he asks for something. My wife did that to but usually after trying something once I didn't like it and would ask for something different the next time. The last time I looked in the panty there were all sorts of stuff I would never eat but did request once.
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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#29037 05-19-2007 04:02 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2006 Posts: 137 | My hat's off to anybody who can eat anything after 5 weeks of rad. It was all I could do to choke down 5-6 Ensures everyday. Didn't eat any solid food for about 4+ months.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#29038 05-20-2007 12:52 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | I have thrown away more food than i care to mention.Like David, Robin thinks he would like to try something and usualy after two mouthfuls he changes his mind and the dog gets it!!!
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#29039 05-20-2007 02:04 AM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2007 Posts: 131 | I know the feeling...a few mouths full and he saids in time usually after it sits there on the counter that he cant eat it. He may have changed his mind and wont eat it or just tries a few mouths full. I usually only put a small amount out for him and store the rest for me later. (most times) We are now stocked with everything he usually liked. e.g 4 boxes of oatmeal and the list goes on. I also try not to eat good stuff in front of him...2 weeks to go!!! 10 days and counting!!
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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#29040 05-21-2007 04:46 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Carol, it will get better. It'll be a while, but it'll get better.
At that point in radiation, I had given up on solid food completely and was just drinking.
We don't have the much lauded Carnation VHC in Canada, but we have a close second available.
Go to Walmart pharmacy, and ask them to order Resource 2.0 Make sure they order 2.0 and not plus. 2.0 comes in two flavors; vanilla and orange, and there are 27 per case.
I would put one in the blender, then add one of those frozen fruit smoothie mixes for a milkshake that's almost a 1000 calories.
I also added fresh and frozen fruit, espresso, etc. for variety, and my wife used it instead of milk in cooking, mixin git with potatoes, carrots, and peas.
It has a neutral taste compared to jevity, Boost, Ensure, etc. and there's no chemical aftertaste.
He may find it a palatable choice. I know it's the only one I could stand, it's the highest calorie count short of Scandia Shakes ( 600 cals/serving), and I still drink at least one a day for a calorie boost.
It actually tastes quite good; I really don't mind it at all
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#29041 05-22-2007 04:22 AM | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2006 Posts: 93 | I have heard that BlackJack gum helps some radiology pts with the metallic taste.
Hang in there it's worth the fight. Marg
caregiver to husband right tonsil stage 3 35 IMRT TX completed 1/5/2007 PET Scan clear 3/07 biopsy 9/07 clear 1st yr PET scan 12/18/07 clear
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#29042 05-24-2007 08:51 AM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2007 Posts: 131 | Frozen fruit smoothies, where do you get that and what is the brand that you used to make this drink. I have Ensure Plus (dietition told me to get it) and Nutren 1.5 stocked here,some regular Resource and Resource Plus, not to mention Carnation Instant Breakfast (in 4 or 5 flavours). I have an arsenal of canned goods now. In fact the cupboard space has been extended to the window sill. LOL. Hope someone eats this stuff. Carol...ps Add Boost puddings to the list and it goes on.
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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#29043 05-24-2007 01:15 PM | Joined: Mar 2006 Posts: 58 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2006 Posts: 58 | mommapez, you can add a packet of carnation instant breakfast to your ensure in a blender with some frozen fruit and some fruit syrup(torani etc) if you want it sweeter and blend that up for a nutrition rich smoothie.
Caregiver to husband David, non smoker. Dx 1/06 SCC Base of Tongue Stage IV, neck nodes involved. Surgery/Chemo/Rad. Treatment finished 5/06. Waiting. Recurrence in lung, Aug07. 6 months Cisplatin/Erbitux. Spots shrinking after 3 Cisplatin tx.
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#29044 05-30-2007 05:23 PM | Joined: Mar 2007 Posts: 18 Member | Member Joined: Mar 2007 Posts: 18 | Hello, This is Kyle 51's wife writing. My husband is in week 4 of radiation and chemo and not on a feeding tube. The nurses at UCLA turned us on to a product called Benecalorie (made by Resource). It's a 1.5 ounce liquid that you can add to pudding or yogurt to get extra calories and nutrients. On the days Kyle struggles to eat/drink he likes it because it's such a small amount to get down compared to other supplements. He swallows down yogurt with this mix fairly easily. The 800 number is 800-828-9194. Good luck. | | |
#29045 05-31-2007 01:03 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | My dogs still have weight problems as a result of all of the foods that I had "Jones" for and ended up not eating. Thanks for reminding me about that Liz ;-).
I ate solid food at around 5-6 weeks out, starting with soft foods. My taste buds recovered pretty quickly but in stages with salt being the first and sweets being the last. Oddly, there were a few things that I could taste throughout, like coffee flavor but many things tasted altered, metallic or just simply like sh*t. It was wierd because things smelled normal.
I didn't get a PEG, hated Boost and Ensure so I had to make do with other nutrients like Carnation Instant Breakfast (I don't think that the VHC variety was around them) - I just got the regular supermarket stuff. I did drop a lot of weight though, but have put a little 1/2 of it back on. The rest I didn't need anyway.
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)
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#29046 05-31-2007 04:17 AM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2007 Posts: 131 | LOL Gary, thank you for all the replies. My husband is in the final treatment stages 1 chemo today hopefully and 3 radiation left. Tuesday he gets the trach out (it fall out once already) and currently can only drink MILK. He is having a hard time swallowing now. He has a feed tube and has been encouraged to increase the amount of Nutren. Hopefully he gets his taste back ASAP. He is going to try Zinc Lozenges after the treatment is completed to increase his taste buds. He needs to put on 15 lb. anyway. Thanks again. Carol...
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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#29047 05-31-2007 08:58 AM | Joined: Apr 2005 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2005 Posts: 60 | Thanks for this thread momapez!! and all the great replies! My husband and I read it together, he now feels "normal" seeing that other people have had the same side effects as he is having now, and he asked for scrambled eggs!
C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed. Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007 Passed peacefully 31st July 2008.
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#29048 07-23-2007 09:39 AM | Joined: May 2005 Posts: 16 Member | Member Joined: May 2005 Posts: 16 | After about 4-5 weeks of radiation I found egg-drop soup to be both filling and soothing. Just boil some chicken broth and rapidly stir in an egg. You can add scallions for flavor. It's also a good source of protein. | | |
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