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Joined: Oct 2010
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I've been lurking for awhile. Now my brother is coming to visit & I decided I better introduce myself & get some advice. My brother is 47 and has been treated for base of tongue cancer,stage 4. He had rad&chemo, no surgery. I know he is depressed but I would like to have this visit be a bright spot for him. Any suggestions from those of you who have been there? What made you happy? Even just the little things might be good for him. Thanks for any suggestions.


Sister to Randy (47, nonsmoker)
Base of tongue, scc, stage IV, lymph node involvement
Dx Nov 2009, started rad/ chemotherapy 12/09,PEG tube
Finished 02/10
Joined: Nov 2006
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For a start, I would ask him for things he might want or need so that you can tell others who might come to see him. When people asked my son if he needed anything, he hesitated to ask, but when he did name specific things, the friends were really glad to bring him something they knew would be appreciated - like a battery for some gadget he had, books, funny movie, etc. Recovering from depression can't be done all at once, but it takes small, slow steps. A gentle hug, but ask him first in case he's sore anyplace.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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How long ago was your brother treated? What did you do with him when he would visit before he was sick? Most of us strive to regain our former lives. Doing anything normal would be a pleasure!!!!

Do your brother a huge favor and introduce him to OCF. Many patients suffer from depression and need therapy and anxiety meds to help them get back to normal. If your brother wants to talk, just being there to listen can do wonders.


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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My brother's favorite thing to do was go out to eat! Now he can't eat & that bums him out. He always looked forward to favorite places to go when he came home now what do I do to replace that. He likes movies so I plan on renting a few for him. He ended his tx in Feb 2010 & has not healed well from the rad. He still has bleeding and lots of mucus. Did anyone find something to take the place of eating? I plan on asking him if he ever visited this site. I know when he first was diagnosed he went online and got very scared. Thank you all so much for your help. I know when My daughter died only those parents who had been through a loss were the ones who truly helped.


Sister to Randy (47, nonsmoker)
Base of tongue, scc, stage IV, lymph node involvement
Dx Nov 2009, started rad/ chemotherapy 12/09,PEG tube
Finished 02/10
Joined: Sep 2006
Posts: 8,311
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His recovery can take every bit of 2 years from the date he finished all treatments and everyone's first year is obviously the worst. He needs to understand this and be patient. I didn't even get back to tasting most foods until my 15th month post Tx. Tell him to get at least 2500 cals a day anyway he can. Forget about the notion of unhealthy foods. If he finds he can eat it, then do so. I always drank a can of Carnation Instant Breakfast VHC with every meal just to make sure I at least was getting 560 nutritionally balanced cals. I ended up with a sweet taste post Tx so it was not uncommon for me to eat pancakes and sunny side eggs smothered in syrup for lunch or dinner. I also found those TV dinners usually had sauces and gravys and high fatty caloric content that were easy to eat. Same for ham steak with mashed potatoes and green peas. Stay clear of white chicken and anything else that doesn't have a high moisture content after cooking.

Believe me I'm not a nutritionist but this worked for me and before long, relatively speaking, he will be eating almost normal again.


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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Davidcpa, thanks for the reply. I don't think we all realized how long a recovery period this was going to be. We all thought the treatment part was the bad time and it would all be downhill from there. What a shock it has been to find out that it is getting worse not better. If someone would have explained that part better maybe it would not seem so bad. The doctors seem surprised that his throat is still so raw and bleeding. What do you think when the doctors act confused??


Sister to Randy (47, nonsmoker)
Base of tongue, scc, stage IV, lymph node involvement
Dx Nov 2009, started rad/ chemotherapy 12/09,PEG tube
Finished 02/10
Joined: Jul 2010
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Ron's has still been swollen and his surgery was 5/13/10 and radiation ended 8/16/10 and his Doc said ya it is still swollen and will be for a while yet. And David he had one of those sweet attacks last week also. He ate maple and brown sugar oatmeal with tons of sugar in it(it was low sugar) and than Thursday he saw something on TV with pancakes and tried to eat a waffle he said with lotsa butter and syryp to make it soft, when that didn't work out too well he scooped up the butter and syrup and ate that. lol slowly things come back slowly be patient and what does the dr's say his future is? did they say he will be able to eat again, did he have a swallow study? Ron has no teeth and at first they said he will get dentures but not for a while maybe 6 months yet. Be patient it does take a long time after radiation to start the healing process. did you post what your brother had done and i've missed it?


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Listen my nurse at Moffitt kept looking at me during Tx and kept saying "you poor thing" making me feel as if I were the only patient Moffitt had ever had to have a nasty Tx experience. She also told me that the dry mouth and no taste would be all better in 4 weeks post Tx. It was not until I was asked to visit this site that I learned that I actually fared better than most! I have had words with her boss over the years about what we really go thru. lol


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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Baring considerable side effects; I can't think of anyone in my support group that has gone eight months past TX and still isn't able to eat anything.

Some taste issue of course and problems with dry or spicy food..

We had an excellent presentation by Scripps Clinic CCC and as I recall there position was three to six month and that seems to be about the norm in our support group.

I hope your brother is getting some specialized care for his eating problems.




Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

Joined: May 2010
Posts: 638
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Hi RS

My Alex would tell you the don'ts first
Don't fuss, don't work your way down a mental list of possible food options making suggestions - ask him what he wants and if he doesn't want anything, shut up and move to the next topic. Don't fuss. Don't watch him when he eats or drinks. Don't fuss. Don't tell him how he must be feeling, and don't fuss.

From me, maybe getting your brother to tell you how you can help him before the situation arises would make things easier. For example, you might ask him what he eats (if anything) whilst you are sitting watching TV and a food advert comes up. Don't wait until you are about to sit down at the dinner table. Does he have a favourite drink, can he explain what the issues are with eating/feeding so you can understand and does he have any tips for helping him. My Alex prefers slightly fizzy water over still, hates when I ask him what flavour yoghurt he wants because he can't taste the difference, can't bear me eating eggs because he can't handle the smell (this week anyway). Your brothers preferences will be individual and you will only know if you ask.

Lastly, treat him like your brother not a sick person and ask him about his needs, energy levels, expectations etc, before you inadvertantly put him in situations that are uncomfortable for you both.

And of course, listen to him and encourage him to talk about his experiences and feelings (if he is that sort of man)


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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