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lotsacats #171441 09-22-2013 02:11 PM
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klo Offline
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Hi Lotsa

Alex had the same issues. He declined to eat until he was 105 lbs (he is 6'1") was hospitalised to be fed with a pump over a 10 hour period everyday through a PEG.

Alex, too, complained of "feeling full" after 3 spoonsful or gulps of formula. If I pushed him, and he had the 4th, he threw up. This led me to doing a little research to try and figure out what was going on.

This is what I learned:
1. chemotherapy (and radiation) causes mucositis. Whilst radiation causes it wherever the beams were aimed, the effects of chemo goes all the way through the gastro-intestinal tract. This means that your husbands feeling full and consequent failure to eat is not a wilful thing so hassling him about it probably won't work. Trying to find a way round is your best shot. For Alex, it was pump feeding overnight for months and then 2 mouthfuls of Ensure Plus every half hour or so. Painfully slow, extremely annoying but we found no other way. Hopefully your husband can try the slow sips method and not have to resort to the pump.

2. A shift in thinking needs to happen so that you and your husband stop thinking about food as a fun thing to do and start thinking about it as a part of treatment. Just like a nasty antibiotic that makes one feel ill, a smart person will keep taking it because they know it is making them better - even if it doesn't feel like it at the time.

3. Trying to stimulate appetite based on things he likes (or used to like) is mostly a waste of time as by the time he eats it, his appetite is likely to have gone, the food tastes wrong, that feeling of fullness will sabotage his best intentions or all of the preceding. Try finding things that are easy and quick to prepare, and can be made in small batches or will last all day.

Alex eventually got used to Ensure Plus - the turning point was when he started treating it as "treatment" not food. However, it took him months to get to this place. In the interim, he was made to feel like a failure by me, his doctors and our well meaning friends. Try to protect your husband from this sort of criticism - it is not productive. Approach the issue as a problem solving exercise but make sure he is aware that if the problem cannot be solved, PEG is the next option, and possibly hospitalisation. He doesn't need to be told this over and over (as I did with Alex and which is my greatest regret)as your husband will know this and repeating it will not solve the problem or cause him to try harder.

Assuming he is well aware of the consequences, he is not being wilful, he just can't.

Having said all that, he DOES need to be encouraged to push himself right to the limit as this WILL give him an easier time of his treatment.

good luck - this was the hardest part of Alex's journey and it should not be underestimated.

Last edited by klo; 09-22-2013 02:17 PM.

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
lotsacats #171444 09-22-2013 04:13 PM
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ngk Offline
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Karen - beautifully said.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
lotsacats #171446 09-22-2013 06:29 PM
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Ditto


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
lotsacats #171562 09-25-2013 01:32 PM
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I read several of your responses to my husband Sunday night, and it must have got him thinking, because Monday he ate better and started talking to me more about different things he thought he could tolerate. We saw the RO yesterday, and he said that everything is on track so far. My husband has lost some weight, but not as much as I feared. We're going to try a protein powder since he absolutely refuses to drink Boost or Ensure, even the "slow sips" way, but said he might be willing to try that method with something less disgusting. If anyone has tried a whey or protein powder that mixes up into something more palatable, I'd love to hear what brand. The health food isle at the grocery store set my head to spinning! Thanks, everyone for your support and kind words.


Wife/Caregiver
6/5 ENT visit
6/11 FNA biopsy on lymph node
6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side
7/8 first chemo using Cetuximab
8/20 radiation oncologist initial visit
8/21 dental clearance
Cisplatin and Radiation starting Sept 9
2nd Cisplatin Oct 1
Radiation completed 10/24
lotsacats #171564 09-25-2013 02:03 PM
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You can buy unflavored whey protein powder in many grocery stores and pharmacies. It is easily added and will dissolve in any liquid. How about making a milkshake and adding it to that?


Chocolate peanut butter milk shake recipe
(I dont measure so everything below is an approximate amount)

3 or 4 cups chocolate ice cream (regular not low fat)
2 cups of whole milk
2 tablespoons of peanut butter (smooth)
1 scoop whey protein powder
1 scoop carnation instant breakfast powder
2 tablespoons chocolate syrup

Blend this for a couple minutes until it is very smooth and creamy. Top with whipped cream. Each shake has about 2000 calories.


I suggest not to disclose how many calories are in the shake to your husband. That way he will continue to try to take in more every day. If you can get him to drink just one shake per day thats half the battle right there. Try to encourage him to eat healthy with everything else.

Here is a list of easy to eat foods that should make it a little easier for him.

Easy to Eat Foods List


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
lotsacats #171611 09-26-2013 05:57 AM
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When I was in Tx we had Carnation Instant Breakfast VHC which is now called Boost VHC. It has 560 cals in that 8oz can so I only had to swallow 5 to 6 a day which makes a huge difference. Anyway I would alternate every hour swallowing a can of the VHC and a can of water all throughout the day. I would stand over the bathroom sink and close my eyes and chug the can down as fast as possible and then wait a few minutes to make sure I wasn't going to get sick. As my Tx side effects got worse I would pinch my mouth shut to prevent me from easily tossing my cookies. Point is I thought it was better for me to swallow it fast vs slowly.

Tell him to FORGET about the taste thing and worry about saving his butt!


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.
lotsacats #171619 09-26-2013 09:10 AM
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Hi, Lotsacats

Sounds like you are both making progress. My husband finds the Now brand whey protein power in natural vanilla flavor to his liking. Interestingly, he found the imitation flavors to be the least palatable.

There is a big difference in how people respond to the therapies - some patients find chocolate good, but my husband found it vile early on. So, you will have to experiment.

Best wishes to you both.

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
lotsacats #171634 09-26-2013 09:24 PM
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I use us warrior, chocolate it's a complete protein.. smile add some fruit or even peanut butter... smile


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
lotsacats #171650 09-27-2013 05:38 AM
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During my Tx I didn't loose my sweet taste and in fact it was probably amplified but I couldn't stand chocolate as it became extremely bitter to me. Post Tx and even today my sweet taste is acute. I even taste sweetness in black Cuban coffee and chocolate became normal tasting soon after 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.
ChristineB #171697 09-28-2013 05:20 PM
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Christine the shake is great. I am doing 1 a day to get my weight back. Shakes were my savior during and post but I needed this recipe early on. Hopefully others try.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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