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#71591 03-17-2008 04:02 PM
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Hey gang - Dan has had 8 of his 35 treatments and the sore throat that I mentioned in another post is still there in full force and now he is starting to have issues with his taste buds. He said things just taste real bland. He's eaten dill pickles and poured on salt just to be able to taste something. He came home tonight with Spicy V-8. I wasn't expecting any of this to happen so soon for him. And now I wonder will he just lose taste alltogether and not go through the burning of tomato products and salt??? I know the answer is probably this is variable and everyone is different wink and I understand that. Still feels good to ask and see what other experiences were laugh

Thanks!


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

luvmyhubby #71598 03-17-2008 06:34 PM
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If he can eat dill pickles and anything with salt on it he hasn't gotten even CLOSE to as bad as it can get. Count on no taste buds for around 3 months, mouth sores, maybe a little longer. He MUST keep up on his nutrition (and fluids) even if it tastes like sh*t.


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)
Gary #71601 03-17-2008 07:25 PM
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Michelle,
buckle up for the ride! There are a lot of rads left and it is generally most miserable once you are finished unfortunately. Taste or no taste, he must eat. Even that may become very difficult.

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #71609 03-18-2008 02:41 AM
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Michelle,

Most of us lost nearly all our taste. I could taste a little sweetness but that was just about it. At best he may taste something close to normal with his first bite but then nothing. This will last many months post Tx. I am just now comfortable with my taste.

That said it is EXTREMELY important for you to make it a goal of yours to see that he consumes at least 2000 cals and 48 oz water each and every day. He will fight you like hell because he will feel like hell and his mouth will be sore and it will hurt to swallow and his taste will be horrible but he will be better off if you are successful despite his help.

There are many unpleasant and nasty things that he will go thru during and post Tx but remember the goal is to kill the cancer that will surely kill him if you don't.

There are a lot of us on this board that have been there and that's why we are still posting to help others that come after us so keep asking your questions and we'll get the 2 of you thru this as painless as possible.


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.
davidcpa #71610 03-18-2008 03:11 AM
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Spicy V-8... WOW

I can't even imagine anything spicy after 8 treatments. I'm 15 months post and still I can't handle spicy stuff (this coming from a person that used Tabasco like ketchup before treatment).

It will get worse Michelle but tell Dan calories, calories, calories, and drink lots of water. VERY important!

Everything will more than likely taste like cardboard for a good while.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
Kevin - Memphis #71616 03-18-2008 07:19 AM
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By day 8, the only thing I COULD taste was SALT. Even things with no salt, like bottled water and my home made chicken broth REAKed of salt. Once things stopped being salty, I moved to cardboard about week three. This is when I started living on Ensure Plus, Coffee and Butter Pecan flavors(I didn't know about Carnation VHC or if they even made it back then). As for spicy, I'm over ten years out of this and still can't have even one tiny little green pepper on a hoagie without my tongue burning.

Expect a sledgehammer to hit around week 3 so bulk now while he can. Use plastic utensils if things start tasting metallic.

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
Eileen #71620 03-18-2008 09:33 AM
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Michelle:

When I was at your husbands level of treatment, I could barely get anything down. Im surprised your husband can eat pickles and salt. Luckily I had a PEG tube. My mouth was just starting on the sores which would last another 2 1/2 months. I started drinking yoo-hoo for its vitamins and thats one thing I could taste. I also drank McDonalds sweet tea. My doctor told me that 2000 calories is the bare minimum to take in. While going thru this you should shoot for 2500-3000 calories per day. My doc said it takes alot of extra calories to fight cancer.

If you can push the calories and fluids now, the more the better. If you havent already, start using ensure, boost, or carnation vhc drinks. He needs to eat like crazy now, cuz when it really kicks in and hits him, he wont be eating much for a while. Each week will soon get progressively worse for your husband. Hang in there. Just when you think it is the worst it can be, things will improve.

Im sorry if I havent given you very good news. Im hoping that your husband doesnt have a hard time of it. Its a very rough fight, but also a necessary one too.


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
Eileen #71622 03-18-2008 09:35 AM
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I don't think I can count - today is actually treatment # 8.

At this point I feel good about the calorie and fluid intake. He drinks a lot of propel throughout the day or gatorade and he's eating something each meal - even if he has to "root around" to pick something he likes - he's also snacking on ice cream. His portion size is way down from before and I don't think there's a chance in hell of gaining the 5 lbs the RO wants, but at this point I can't complain. He's pretty positive about it so far too - I think he feels a little bad for me when I cook now and he doesn't like it. He wants a big juicy steak from his favorite eatery tonight and plans to pick up dinner from there on hihs way home - that's him "cooking" since I'm tied up with our son today. I really really pray that he can enjoy that steak at least one last time.
He sees the RO today and hopefully they will talk about all that's going on. I hate to miss the appointment, but of course not a choice with our son's surgery today. Hopefully this will be the last thing I miss.

Thanks for all your comments/feedback/suggestions. It is so helpful to have you guys!

Oh - RO is just real anal about weight. Hubby is at least 50 lbs overweight, so not gaining the 5 lbs won't make or break it at this point - I hope.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

luvmyhubby #71654 03-19-2008 05:10 AM
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Michelle

My dentist told me to be real careful with the Gatorade, it's loaded with sugar and hard on the teeth.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
Kevin - Memphis #71660 03-19-2008 09:34 AM
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Let him eat all he can now but if he gets any hint of mouth sores dont eat the pickles. Does he have his peg tube yet? Better to get it now it just makes life easier so remember everyday is different and tomorrow he may stop eating all together. I remember asking the nurse after 10 treatments where we were on the pain sickness scale and she said a 2 (10 being highest) I used Rain Gatoraid via the feeding bag mixedwith water. My husband had trouble with heartburn so I watered it down and he sipped on water. he took food by mouth for 2/12 weeks and then every once in a while for 2 weeks then nothing. He did so well thru the treatment that they talked us into doing more chemo and now he has a severe chemical burn and in the hospital since Monday. Every day is different.

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