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#183676 07-23-2014 07:01 PM
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My dad had PEG removed and is taking VHC Boost, but is having trouble going beyond the liquid to eating due to taste issues. Attempts to eat things from eggs, potatoes, ice cream, and soup resulted in experiencing such awful taste and texture sensations he had to spit found out. Now when we talk about trying something, the mere thought makes him nauseous. Also, his sense of smell is becoming very acute. Yesterday Mom baked chicken and Dad had to leave the house because the smell was sickening to him. Even on our walk around the neighborhood, he said all the flower bushes were so pungent (I couldn't smell anything).
Any suggestions?


robin
My dad age 62 lymphnodes in left cheek removed (two cancerous) chemo/radiation ended May 31, 2014
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The sense of smell can be affected by radiation treatments. Im sorry it is bothering him so much.

As far as the eating issues, I just responded to another member with an almost identical post. Here is what I advised....


The recovery phase can be full of ups and downs with a few good set backs thrown in for good measure. Being only 5 - 6 weeks posts rads, you still have a loonnngggg way to go with your recovery. Your sense of taste can take every bit of 2 full years until it is the best it will become. Most patients are doing much better with taste at about 4 months post rads with slight and gradual improvements straight to about the 2 year mark. One day something will taste great and 2 days later after the first bite it tastes horrible or it tastes like cardboard right from the first bite. This will be the norm for your for a few months.

Here is a list of foods that have a softer texture and should be easier to manage when relearning how to eat. If something doesnt taste right today, wait a few weeks and try it again. You really will get there, it just takes time. We are all impatient with the recovery process, it seems to take forever.

Easy to Eat Foods List

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
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8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
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OC 3x in 3 years
very happy to be alive smile
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Eating is always dicey right after treatment...sometimes due to pain, sometimes due to tastelessness....sometimes (like your dad...tastes awful and texture is stinky). I know one person who didn't have anything but smoothies for 7 months post treatment, and then everything started working again. I wanted my Peg out so bad, I wore steel toed work boots for a weigh in....I suffered from the plaster board symptom...that's what everything tasted like to me.

High calorie smoothies might be worth a try...

p

PS...My nose was so good during radiation, I could have tracked a human across a field and found him smile.


Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
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It's funny how this treatment can affect us all differenty. I couldn't wait to start eating solids again. As soon as I felt I could stand the discomfort I asked my wife to go to KFC and get me some mashed potatoes with gravy and some mac n cheese. Of course it didn't taste anything like I remembered and it took forever to eat a small portion of each but I was so proud that I did it and relieved at the same time.


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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Robin, I can identify with your dad. I was one of those people phrannie mentioned, think it was 5 or 6 months until I could tolerate anything thicker than a shake. But he will improve. Until then, those nutritional drinks will keep him alive. I'm suggest not rushing the process until he's ready. And when he is, let him tell you what he's interested in eating. He can continue the VHC until he starts adding enough solids to maintain good nutrition.

Dunno if you've been mixing other stuff in with the Boost, but there's plenty of nutritious items that can share a blender - peanut butter, fruit, yogurt, etc., etc.

Good luck and keep us posted.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Even though I started eating solids appx 3 weeks post I still drank my VHC with every meal for at least my first year of recovery. I mixed it half and half with whole milk to add much needed calories because even though I was eating solids I couldn't eat like pre Tx as it didn't taste the same and it took far longer than it used to.


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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I had to be careful to initially present very small portions. Otherwise my husband became overwhelmed and would be reluctant to even try the food. It's hard to remember, as he eats quite normally now, but he started with only a shot glass of soup or pudding at a time. His PEG was not removed until he could eat enough to maintain his weight.

It's a very complex process both physically and mentally and takes a long time. Some trial and error is involved and to some extent the patient has to be motivated enough to deal with the bad taste/smell/feel. Your father's acute sense of smell does sound extreme. I wish I had some suggestions for that.



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Treatments can cause smell, taste aversions, and sensitivities. As was done, is removing themselves from the environment when certain foods are being cooked, cooking elsewhere, not cooking certain foods etc. may be helpful. I couldn't take the smell of garlic my last two treatments, even on people's breath I could smell from a distance, even my own hands if touched weeks earlier, the smell lingered. I also had to spit out food due taste, texture, like potatoes, bread, which I didn't eat for a year or two, icecream just starting to taste sweet again, and not gritty after several years.

One thing that may help the sensitivities or aversions is drinking a strong flavored drink like rootbeer, grape, the same with a hard candy. Some use herbs to mask flavors, some don't use. I have a problem with dried Thyme now.

It's also best to stick with familiar foods, rather than unfamiliar. Eat mild tasking foods, not too hot, spicy, sharp textured. More mild carbohydrates, rather than proteins that have strong flavors.

Eventually it gets better, back to near normal. What you don't like today you may like tomorrow, and vice versa. For some reason, I''m not eating eggs the past two months like I was befor for some reason. Whatever, I just move on to eat something else. There's plenty of food out there to tasted, and be liked.

Maybe try a buffet one day. Saves money, energy, to see what is liked and can be eating instead of wasting.

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
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I had odd cravings. I found it had to be something I could visualise eating, something that smelled right and most importantly, always tastes the same. Processed meats like frankfurts or spam, they taste the same, every time you've tasted spam its the same. Take away foods, like KFC as David mentions above, can help too. Those things taste and smell exactly the same every time, and you can force your brain to smell it and make the connection even when the taste buds say no.

Don't be thinking it has to be soft to go down. Scrambled eggs made me gag, but vegetables, even crunchy things like fresh celery, go down fine. As suggested earlier try buffets. Not necessarily food courts. I remember my first outing to a food court, I spent 20 minutes going from place to place, then realised there was nothing I could eat at any of them, I sat in the corner and had a cry.

Buffets you try things, especially salad bars. You can try one gherkin or a spoon of cottage cheese or any number of things and if nothing appeals, go fill another plate.

Your Dad has a long way to go. Now that isn't the easiest thing to hear, and right now the last thing he's wanting to contemplate is another 2 years like this. It wont be. The important thing is to focus on how far he's come already. It won't improve overnight but every day will get slightly better. One by one he'll have victories over food and the confidence and spirits will rise with each one. One day, he'll stand like I did at a food court this week. I told myself "I CAN EAT ANYTHING HERE!" And I had a whole kebab. Eventually wink


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.
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Here in the states there is a chain called Red Lobster and every spring is "Lobsterfest". So for 8 weeks I drank Carnation VHC while watching 4 commercials per hour of someone dunking lobster tails in drawn butter. My first big meal after treatment involved said lobster tails. Couldn't taste them but it was really more about revenge for their torment.

Contrary to popular belief, revenge is a dish best served with little ears of corn, snow crab and drawn butter.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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