| | Joined: Jun 2012 Posts: 5 Member | OP  Member
Joined: Jun 2012 Posts: 5 | My husband is done with his treatment but is still in alot of pain with mucositis his is stage 4 on a scale of 1-5 . He has a feeding tube but now that he is finished with treatmnet the cancer center will not provide his formula anymore and we have no insurance. We have found a few local people to donate ensure and boost but it is much different than the nutren 1.5 i have been mixing protein powder with it. Any tips on getting him over the pain and anxiety of swallowing. He feels very subdued to this.
Last edited by ChristineB; 07-18-2012 08:47 AM.
age 46 diagnosed with scc of tongue stage three 35 radiation and three cisplatin peg tube first PET scan august 14 2012
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | When did he finish his Tx?
What was his Tx?
What type of cancer was he treated for?
Have you applied for County assistance?
How old is he?
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.
| | | | | Joined: Jun 2012 Posts: 5 Member | | OP Member
Joined: Jun 2012 Posts: 5 | He finished treatments month and half ago 35 radiation and 3 cisplatin and he had scc stage 4 on his tongue He is 46 and he has applied for SSI and disability
age 46 diagnosed with scc of tongue stage three 35 radiation and three cisplatin peg tube first PET scan august 14 2012
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | You can get formula and supplies for free thru the Oley Foundation. All you need to do is contact them and tell them what you need. They will put you in touch with someone who has extras or leftover supplies. You send them a money order to cover S&H and they will send you the supplies. Its about $16 a case to get something shipped which is much less than what medical supply companies charge for a case. Oley Foundation Patient Exchange Nestle also has a program that will give patients up to 12 cases once per year for free. You simply have the doctor or nutritionist fill out their form and fax it in to them. They should follow up on this and make sure its being processed. Send them an email asking about their donation program for liquid nutrition. They will give you the info you need to get some free cases. Nestle Customer Service for free formula When you can please add a signature so its easier to help you. Click on the "My Stuff" tab then on the drop down menu, click "Edit Profile". Scroll to the bottom and type your info in the white box and click "submit".
Last edited by ChristineB; 07-18-2012 09:00 AM.
ChristineSCC 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  | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there.. Also get club soda flatten it and make sure its room tempersture and have him drink it... It mimics the salt, baking soda, and water mixture suggested by CCCs it will help sooth and heal, and it's fully drinkable which the other mixture is not (will help the throat area). Also ask for a magic mouthwash prescription it is swallowable and will numb him so maybe he can drink his formulas - this will help maintain his swallowing reflex. Also there is a website called drink your meals.com it's run by a member of this site and is free to peg feeders and will give you home made recipes that are usable in tubes and will give the same or better health benefits. Take care and hope he feels better soon.. 
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
| | | | | Joined: Apr 2012 Posts: 22 Member | | Member
Joined: Apr 2012 Posts: 22 | Thanks for posting these available "helps"..and the website...we're having issues w/insurance covering the formula now too. Jane
caregiver to 87 yr old mother,HPV +,Using Erbitux w/little success,Hole in palate, & 3 new areas..2 in cheek, now tumor in sinus. See Rad Dr soon & will cont. w/Erbitux. PEG tube in April. Macular Degeneration--chemo finished off her sight. Mom passed away Fri nite...8/24.
| | | | | Joined: Jun 2012 Posts: 24 Member | | Member
Joined: Jun 2012 Posts: 24 | Christine and Cheryl:
THANK YOU so much for the info re liquid nutrition. I have been searching and searching for recipes that I can swallow in order to get the recommended calories/protein/vitamins, etc. I am taking in some easy to swallow foods, but still rely mainly on PEG and osmolite liquid nutrition formula to make sure I'm getting daily requirements. I've lost 90 lbs since diagnosis (regained only 10). At dx, i joked that at least now i would lose the extra weight i couldn't seem to lose. Not so funny now!
And I have unused Jevity and Osmolite (different type) and just can't bring myself to throw it away cuz i know how expensive it is and always intended to find out if I could donate it anywhere so that those who couldnt afford it could use it.
Thanks again.
Wendy
Wendy 48@dx
Dx 2/11 stgIVSCC BOT
Dx 3/11 stgI breast (3rd of 4 sisters dx'd)
4/11 dbl mastectomy; no further tx reqd
5/11 PEG placemt;
5/11-7/11 chemox7;IMRTx35;
MRND 9/11
11/12 Dx:papilledema;hydrocephalus;psuedotumor.
11/12 LumbarPeritoneal Shunt
12/12 PEG Out; 100 lbs lost
All scans clear
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