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When John started using the tube, the main concern of the dietitian and the RO was whether he could tolerate it and John isn't lactose intolerant. So, I guess there are people who can't take some of the formulae. It is really important, though, for you to keep an eye on your weight and that you are taking in the essential nutrients. Do you have access to a dietitian at your hospital?


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Try making your own protein shakes. You can minimize the carnage to your tastebuds by putting whatever you like into them - or nothing at all if you want it to be flavorless.

I use a vegan protein (two actually) chocolate and vanilla flavors (they have berry and flavorless too) - add fresh fruit. and for the lactose intolerant (or vegans/veg heads like myself) I add sugar free vanilla almond milk. Christine puts peanut butter and ice cream in hers. So it's an anything goes situation.

It packs a protein punch, calories (I add flax too) and is healthy and tolerable. (I have been doing this since treatment was over and Even though I feel terrific - I still have a massive smoothie every morning to kick off my day. But now I make sure it actually tastes decent.

If you have no taste at this point - then add veggies too - beets - kale - greens etc...

Hugs... it sucks but you can do it.


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
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Hmmm, so the tummy troubles continue. The doctor now thinks that perhaps I have a bug - but I find that they rarely listen as much as they presume they know what is happening with you.

I did see a dietician, who was the one who pushed me towards Ensure, One Resource etc as the protein shakes I was making had started to burn my mouth and throat. But they gave me a couple of days of diarrhea, which, as you can imagine doesn't aid in keeping the food and fluids with you.

For the last two days I have been able to eat almost nothing without throwing up. The gave me maxeran (sp ?), which did less than gravol - and gravol helped but not enough to let me eat. The nurse today wondered if it was just an extreme case of heartburn, the doctor thinks it's a bug, and I'm not sure how much the super thick and disgusting mucus that I keep trying to clear plays into this.

Today in the radiation machine, I started to get really worried that I was going to end up throwing up in there... made it through but ended up gagging and retching afterwards.

But today they gave me an IV bag at the hospital with Zofran, and that helped a lot and quickly. I was able to eat some tonight although I am running around in circles trying to find options that won't make the situation worse. Then I'm going to take gravol over the weekend and see where we stand on Monday. The one godsend is that I am being hydrated everyday - so I'm getting a litre of fluids every day via the picc line. And, they did bloodwork today and said they'd call if it was not good - and there was no call.

The good thing is that I am pretty overweight, so starvation won't be happening anytime soon.

Cheryl - I'm going to try a flavourless protein shake tomorrow - I stopped making them because the fruit burned my throat and the peanut butter gave too much texture - but your idea is a good one, just soy milk and the vegan protein powder with some maple syrup. If I can get that down, I'll be happy...


Age 48, Rabid non-smoker, Mom, horse lover
Diagnosed SCC Feb 11/14
CT Scan showed three larger than normal lymph nodes
Partial Gloss & SND Mar 25, 2014
Nodes Clear/ 3mm margin / RADs recommended
Began RADs May 20, 2014 (30 in total) ENDED June 30th
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"OCF Canuck"
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Go for it let us know how you fare... Hugs


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
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Can you ask your doctors to give you a prescription for Zofran so that you can take it at home when you get really nauseous? Do be careful, it is not so much losing the weight but the fluids that can make you feel really fatigued and unwell.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Another update

I had miscounted my days, I only have until June 30th. Two more treatments to go, finish line in sight.

I got a prescription for Zofran, which really helps, and then, after some discussions with the pharmacy, the Fentayl patch, which made my dizzy and nauseated. I just pulled it off after about 8 hours - did nothing for the pain and I threw up, which I haven't done since I started the Zofran on Wednesday. I don't think I can tolerate the opiates. I've only every been on opiates once before, when I was in the hospital for my partial glossectomy, and I was a vomiting queen until I got off of them.

TBH, I'd rather pain than vomiting and more pain due to the vomiting.

Anyway, almost there. Cannot wait.



Age 48, Rabid non-smoker, Mom, horse lover
Diagnosed SCC Feb 11/14
CT Scan showed three larger than normal lymph nodes
Partial Gloss & SND Mar 25, 2014
Nodes Clear/ 3mm margin / RADs recommended
Began RADs May 20, 2014 (30 in total) ENDED June 30th
Joined: Jun 2007
Posts: 10,507
Likes: 6
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If you removed the patch after only 8 hours, it wasnt enough time for it to really work. It takes a good 24 hours for the patch to begin working. It may have been too strong for you or any number of other reasons.

In a few more weeks you will be feeling much better. Hang in there and its ok to lean on us if you need help.

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
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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