| 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 | As soon as I could swallow anything not ensure (two weeks out) I started trying things... Most hurt and tasted LIKE CRAP. It stayed this way for a long time. But I stopped the ensure, found a smoothie mix that wasn't totally heinous and stuck with it, adding mild foods at first to prevent - BURN (hot-spicy, acidic) and overall pain. Soft foods, omelets, potatoes, mild soups, and I worked my way up. I still miss a lot of my sweet. It really is an individual thing. hugs. Try try try - just don't be afraid to spit it out.
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Struggling with the same problem myself Alpaca. I have two problems, one is the difficulty holding weight and the other is the pain in the raw throat. Its causing me a lot more stress than I realised, and the doc put me on a mild anxiety drug for it. She also did a review of my pain meds, and again reinforced that it is more important right now to get calories down than it is to be in a rush to get back to a normal diet. If it means more "thickshakes" then thats how it is, at least until the throat heals. But everything I've read and been told about taste is that it takes months to come back properly, and probably won't come back exactly the same ever again. We just have to be patient and keep things ticking over in the meantime.
As a side note, in my experiments with what food tastes ok, I found a tinned pea and ham soup I liked. I knocked off a 500g tin of it, which is a lot for me right now. Its not very high in calories, but the taste was there (probably because of the way it smells, I tend to taste through smell at the moment). The wife will do a proper pea and ham soup in the slow cooker, and it will have more calories and nutrients than the canned version. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | 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 | To the both of you, you need to get at least 2500 to 3000 cals in you daily. I found the best way was by drinking Boost VHC which has appx 560 cals in a small 8 oz can. Even when I started to eat solids I would mix a can with whole milk and drink one with every meal. I consumed 3000 cals every day and didn't gain a pound my first year of recovery so that tells me my body was expending a ton of energy recovering. JM2C
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Good advice I'll endeavour to follow. Went to a lecture on oral cancer and care of teeth where we were given the fear of God talk and charts about the horrible dangers of sugar and carbonated drinks and fruit juice. So on the one hand, you can taste only sweet stuff and you have to consume mega calories and on the other, your teeth and bones will rot if you allow sugar to pass your lips. Lose, lose situation. My compromise will to continue with my sweet thick shakes, drink them with a straw and follow up with a drink of water. Sooooo hard to keep teeth as clean as I would like because of trismus and discomfort. We're not given fluoride trays here, they were mentioned only in passing and I would have to go to my dentist to get them made up or have fluoride applied to my teeth. Fluoride toothpaste hurts like hell and has for the last few decades for me. If it stings so much, I feel it is not good for my mouth. BUT some good news. I have started to get SOME taste back after two weeks and three days. Because I was at the hospital for so long yesterday without my trusty powdered Fortisip, I bought a chocolate milk for lunch. It tasted almost nice. The chocolate taste was almost spot on, not just the vague taste I used to get from choc ice cream and sauce. Later I tried some blueberry juice and the same again ... true flavour, although I can't say I actually enjoyed it. I might get me some pea and ham soup, Oz .... and I wish I had a wife!!!
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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 Stannos Floride. My gel didn't sting or burn at all and I used it every night for 5 years post Tx.
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: 5,260 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 | well I have minimal sweet taste so that's one up on the cavity prevention charts. That's why my dentist likes me
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Funny thing, I've never found any actual taste to Bud* at all.
In fact, I sent a sample off to a lab to see if they could shed any light on the matter.
All I got back from them was a note that my horse has diabetes and I should get him to a vet. And I don't even have a horse.
(rimshot)
* Bud, short for Budweiser, a popular (though God only knows why) American Beer.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Put one of these round sticky punch holes papers on your tongue, place blue food coloring on a cotton swab and dot the inner circle, and your taste buds, papillae, will show. It depends on how many show, I think 40 or more you're a "super taster", and may have sensitve taste, especially during treatment it may be off putting. 15 is a "non taster", have trouble tasting bitter, so chemo, a poison, and reason we taste bitter, may not be as much a problem, and some things taste the same. That's why I don't trust anyone's restaurant recommendations. I'll find out myself lol. .
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Yeah, you're 100% correct on that point and I also never trust anyone else's restaurant recommendations (without going there and checking it out first.)
There is also the fact that what appeals greatly to some is apt to gag others.
Asparagus was like that for me, for many years. A good friend loves Vietnamese food, but despite living there for nearly 4 years, I simply can't abide most of it. And I love most chinese cooking, which vietnamese food most closely resembles.
Different strokes...
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I was like that with asparagus, mushrooms in my childhood, and love them now. Fish I didn't eat most my life, seafood yes, but did canned tuna, maybe fried flounder or fish and chips on rare occasions. About 10 years ago, I started eating Chilean seabass, monk fish, skate, and developed a like for them, but can't say I would order them at a restaurant, but do cook them at home once in a while. Ironically, I can't eat cooked salmon, tuna, but can eat them raw, and most other sushi, sashimi. The same with coconut. Can it it raw, coconut milk, the jelly, water, but dislike dried coconut, even dried citrus fruit.
Sometimes it's an acquired smell or taste aversions from various reasons, like from cancer treatment. Fish, I understand I choked on a fish bone early on, and didn't eat thereafter. Even tonight, I made a pot of slow cooked red beans with smoked ham hocks. Unfortunately, I vomited from pain meds I'm taking, but the food smell and association made it off putting in my mind, so I threw the whole pot out! During treatment, I didn't want to eat any of my favorite foods, was happy just getting by with canned protein, and didn't have no aversions during or after except garlic. I could not take the smell, which tripled, and even smelled it on all the Heath care workers breath. I would gag especially them putting the mask on, and hold my breath. I'm sure mine wasn't either from all the damage, dry mouth lol.
Texture is another. Just from chemo in 2009, I could not eat potatoes, bread for a few years, and made me gag. It was a texture thing.
Taste is also more than just tasting. It also involves memory, smell, sight, hearing, texture, and taste the 5 taste sensations bitter, sour, sweet, salty, umami, and a 6th one, fat, from mouth feel. Incorporate these, and you will have a different taste experience, even from the ambience, color of the room, plate, etc.
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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