Previous Thread
Next Thread
Print Thread
#37623 07-10-2004 03:22 PM
Joined: Jul 2004
Posts: 8
Member
OP Offline
Member

Joined: Jul 2004
Posts: 8
At this point my sister can only eat oatmeal, poached eggs and Ensure because of such sensitivity and burning sensation with anything else. (She also weighs 90 pounds and is still dropping weight.) Does anyone have any suggestions for other liquid supplements (she is also taking liquid vitamin/minerals from her naturopathic physician) or foods that might help her GAIN weight and get more nutrition than her current diet? We hope a feeding tube isn't the only answer....


DenverSis
Sister has SCC on tongue- surgeries in 1979, 1997, 2002, 2003- radiation 2002 & 2003- 7/04 70 yr old sister opted for hospice & palitive care- 8/22/04 I moved to GA from Denver to help & love.
#37624 07-10-2004 03:51 PM
Joined: Apr 2004
Posts: 482
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 482
DenverSis, Welcome. I had a peg (feeding tube) and strongly recommend them as your sister needs her strength to fight this disease. When I was using my peg, I added Carnation Instant Breakfast to the drink and sent it down the tube as I couldn't stand the taste or consistancy and couldn't swallow anyhow. If you do a search on this site there have been a lot of discussions regarding diet and recipes for lots of drinks and slushes and milk shakes and such. With a tube you don't have to worry about it so much as you take in the calories through the peg. Hope this helps.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#37625 07-11-2004 11:00 AM
Joined: Jul 2004
Posts: 4
Member
Offline
Member

Joined: Jul 2004
Posts: 4
Denver Sis,

I had a PEG Installed and it was really no big deal. It solves a lot of problems with nutrition and hydration and is not really that much trouble. The problems that will occur with lack of nutrition and hydration in my opinion are much worse than the minor incomvienances I have experienced with my PEG. I'll be praying for you and your sis. God Bless.

Regards,
Fountain Valley Dale


Stage IV SCC, left side of neck, primary left tonsil. Cisplatin/5FU.
Treatment started 21 June 2004.
#37626 07-11-2004 04:48 PM
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
Hi Sis, I had thrush (yeast) problems that caused burning in my mouth. I don't know if she has been checked for that (sometimes doesn't look like classic thrush after radiation either)

as for other eating ideas read some of the recent posts here or search the site. We have had Many conversations about eating.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#37627 07-11-2004 04:52 PM
Joined: Jul 2004
Posts: 8
Member
OP Offline
Member

Joined: Jul 2004
Posts: 8
Thanks to Kirk and FVDale for your encouragement on the PEG. We'll see what this week's appointments & recommendations hold, as we will be choosing an oncologist. (You would think this was all new to us, but actually my sister has had 3 surgeries since '97 with the same ENT, as well as a series of 2 radiation treatments, and has never seen an oncologist.) We really feel the need for a primary care physician, so hopefully while I'm in town we can get that arranged. Your positive thoughts and prayers are much appreciated and we send our prayers back for you.
Bless you all..


DenverSis
Sister has SCC on tongue- surgeries in 1979, 1997, 2002, 2003- radiation 2002 & 2003- 7/04 70 yr old sister opted for hospice & palitive care- 8/22/04 I moved to GA from Denver to help & love.
#37628 07-11-2004 08:35 PM
Joined: May 2004
Posts: 80
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: May 2004
Posts: 80
denverSis,

re food and keeping weight on, read the latest thread on this in the "currently in treatment" forum under the topic "Any idea's on how to keep the weight on?"

re peg tube, it can be very helpful if your sister is not able to get sufficient nutrition through the mouth. the trick is to not entirely give up exercising the facial and oral muscles though as muscle atrophy is possible particularly for people who've got the tube for many months (this has happened to my sister). the physical therapist in your medical facility should be able to help with that.

best wishes for you and your sister.

gita


sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
#37629 07-12-2004 05:01 AM
Joined: Jul 2003
Posts: 235
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Jul 2003
Posts: 235
Hi Sis,

An option to Ensure is TwoCal HN. I believe TwoCal HN has 450 calories. I've not found any other supplement that has more calories. I've not been able to find it at the grocery store, so we order it through a medical supply company. Check with the hospital, they should be able to direct you to a source.
Best wishes.
D


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
#37630 07-13-2004 05:30 PM
Joined: Feb 2004
Posts: 372
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Feb 2004
Posts: 372
My husband had trouble getting enough BoostPlus in him, so the nutritionist prescribed Nutren 2.0. It came from the local NeighborCare and had 500 calories a can. That way he only had to get at least 4 in a day.

Hope this helps and God bless,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5