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#193848 - 02/06/17 11:52 PM nutrition
Murphy Offline
Member

Registered: 07/25/16
Posts: 13
Loc: Louisville, Kentucky
My heart goes out to all who has had some kind of oral cancer with surgery, radiation treatments and chemotherapy. I had tongue cancer surgery, right neck disection and radiation treatments. To me the loss of taste with the pain inside my mouth from the rad treatments was the worst. I also had all my teeth extracted. I am slim and could not afford to lose a lot of weight (lost 20 pounds). The Ensure and ground up food was not cutting it, I am a picky eater as well. A friend suggested mass gainer from the grocery store, I tried the vanilla and then the chocolate. I could taste the chocolate and was also slightly sweet. I immediately started to gain some weight back. I investigated further and found out that I could get quality mass gainer cheaper and by the bag at the vitamin store. I buy the chocolate and mix it with high protein chocolate milk. It is like a chocolate milk shake and have at l;east 2 a day sometimes 4 if I don't feel like eating. It has been a big help for me and hope it helps other people out!
_________________________
5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous

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#193878 - 02/15/17 12:55 AM Re: nutrition [Re: Murphy]
MrsW Offline
Contributing Member (25+ posts)

Registered: 11/29/16
Posts: 43
thank you Murphy for sharing this. My husband has two rads left. No taste and pain PAIN pain...
he too is not a big guy and has lost 20# that he couldn't affort to lose. the recovery will be challenging of that I am sure. He has a PEG so that is very helpful.
Is Mass Gainer the name of the product? is it liquid or powder?
may I ask how long it took for you to taste the sweetness? have you recovered any other taste or ability to eat?
I know you just received concerning news... sending you positive energy and wishes
_________________________
MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!

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#194047 - 03/20/17 10:02 PM Re: nutrition [Re: Murphy]
Murphy Offline
Member

Registered: 07/25/16
Posts: 13
Loc: Louisville, Kentucky
MrsW,
I am sorry it took a while to get back to you, the first Mass Gainer I tried is made by "Body Fortress" Super Advanced Mass Gainer 40g protein, 1000+ calories (2.25 lbs). It is a chocolate powder, I use 3 scoops with high protein chocolate almond milk in a blender. Comes out like 1/2 shake and 1/2 chocolate milk, but it is sort of expensive. Now I am using Musclepharm Combat XL Mass Gainer, 1270 calories, 50g protein, 252g of carbs.(Green and Black bag) I buy a 12 lb bag at a good price on Amazon which is nice as they bring it to your door(ship it). I mix it the same way. I use the small scoop from the Body Fortress Mass Gainer, it makes about 24 oz and I drink it all at once.
During the rad treatments food had to be room temp and most of it was repulsive to me, I had all my teeth extracted and food put in the blender just didn't taste or feel right. I also took hydracodone for the mouth pain. No peg tube.
If I remember right it took about 3 to 4 weeks to get the taste of sugar back and then the regular tastes came back as well, about that time I finally started to get a appetite back.
Now I'm into my 11th out of 35 rad treatments on my epiglottis and false vocal chords, my throat is starting to hurt especially when I swallow, I have hydracodone for the pain but it doesn't seem to be working too good, I also have some of that Mary's Magic plus Lido but I have to swallow it to get down my throat to numb it, probably not a good idea, it says on the bottle to spit it out. I was thinking if getting some floriseptic sore throat spray and trying that but I don't think you are supposed to swallow that either. I haven't tried gargling with salt and baking soda water yet, wonder if it will work.
Murphy...
_________________________
5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous

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#194048 - 03/21/17 02:57 AM Re: nutrition [Re: Murphy]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
Thanks for the great nutrition info! Im sure many will find it very helpful when they are struggling to take in enough calories.

Please talk to your physician about better managing your pain. Many have used the fentanyl patch to better take care of stabilizing your pain. The patch will provide pain relief for 72 hours then you simply take the old patch off and put a new one on (in a new spot). It takes up to 24 hours for the patch to begin working when you first start out. Just make sure to read and follow directions exactly. Never cut, fold, bend, tear, crumple or in any way break or rip the patch. Do not take long hot showers or baths while wearing the patch as it can cause it to release too much medication causing major problems even an overdoes. Sounds like it can be tricky but its actually much easier than taking dose after dose of liquid medicine or pills. When discussing the patch with your doc, make sure you have something for breakthru pain. Thats when you have short periods of more intense pain and you need additional pain meds to manage it so you can be comfortable.

Im concerned about you swallowing magic mouthwash (several names and variations of what you mentioned). It can be very dangerous swallowing the magic mouthwash instead of swishing it around and spitting it out. By swallowing, it will numb your throat and can cause you to not swallow properly causing aspiration pneumonia. Before trying any product, even over the counter products make sure you talk it over with your doctor. There are things that can interfere with your treatments. Even certain vitamins or something as simple as putting on lotion before a treatment can cause problems for you. This is why its so important to talk openly and in detail with your doc so you dont inadvertently throw things off. The warm water, salt and baking soda will help neutralize your mouth ph, it really does help with mouth sores. If the salt burns too much lessen the amount you add, just try your best to keep some salt in your mixture so you can get the most benefit from your concoction.

Hang in there and please check in often. We are here to help you get thru this. Best wishes with everything!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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