#3614 09-07-2004 04:24 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Thanks Mark! Take that Joanna!
Hot Tip - The Carnation Instant Breakfast Espresso is really good, but it only comes in the variety pack. I alternated those with Hagen Daz milkshakes and made it through (and no PEG tube).
Marica's formula sounds pretty decent.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#3615 09-07-2004 04:51 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | What a bunch of picky eaters (grin). I was very fortunate that the canned stuff supplied to me was tolerable. Of course I didn't have to taste it as it was going down the PEG, but it actually smelled pretty good. I, too, got rid of the PEG asap, and felt like Lady Bountiful when I wheeled 14 unopened cases of canned food into the county nursing home. They were practically doing cartwheels to get it, and I was practally doing the same to get rid of it.
And Gary, the last I heard, you are a long way from the UK. Around here, we spell 'merican, boy! (grin)
Joanna, who has NEVER made an error (yeah, right) | | |
#3616 09-08-2004 04:56 AM | Joined: Jul 2004 Posts: 16 Member | | OP Member
Joined: Jul 2004 Posts: 16 | thanks guys for all the info iam going to pick up some of that boost and i just drank some carnation instant breakfast i also have a juicer and have been trying some combo fruit juices ...i've had the prosthesis for probably 2 months or more and i've had the DROOL since after my surgery it seems when i try to chew i can't move the food around because of course the tongue surgery how did you get around that ?? i would like to start eating those cups of fruit (lunch paks ) and some soups like almost a (chunky type soup) iam pretty fed up with this ensure shit and then feeling like crap after i drink it thanks guys
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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#3617 09-08-2004 05:28 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | if anny boddy isis goinnnna havve a fissstfitt overrr spellling. II willl probbablly loosse.
Dannnnnny Booooy.
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#3618 09-08-2004 06:34 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Well.. get in line Danny...lol. Being Scottish and living in USA I tend to use a mixed up version of the English language...if you think my spelling is bad, you should hear my accent...!
Love to all
Marica
Caregiver to husband Pete SCC stage IV base of tongue. Chemo /rad no surgery DX 4/03 ended treatment 7/03...doing great.
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#3619 09-08-2004 06:34 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | As an English teacher, I have to say I am quite impressed with all the correcting going on around here! When I slip up and get caught saying or writing something that is incorrect, I just say, "Well, heck, ya'll. I'm off duty. You know what I meant!" :p
I can't resist this one, Danny Boy. Your post reminded me of a word I see misspelled on here from time to time:
"Loose" means not fastened or contained. "Lose" (pronounced looz) means to fail to win.
I'm really not being a smart-aleck. It's just that this stuff is in my veins. :rolleyes:
Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#3620 09-08-2004 07:16 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Ya'all is quite proper in this neck of the woods. In Arkansas they mispronounce it you'all.
I kind of think the druel thing is a contraction for cruel drool...aka druel. I guess technically it would be crool. Maybe..drool is cruel?
I tried the juice route so many times in the past year and fruit or juice still burns the tongue. I used to juice almost daily. Anybody else experience that? I can eat jalapenos and spicy food even but the juice along with most salad dressings really hurts.
Gotta go...drink some Boost from all this talk.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#3621 09-08-2004 11:05 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I found I could drink apple juice but not citrus. Lived on blue cheese dressing for several years because couldn't take vinegar. I found kraft balsamic vinegarette the first dressing I could tolerate with vinegar. I also had to make cetain that red wine was low in tannins or couldn't drink it. I'm now ok but that took a couple years also. White wine and beer were always fine. Now 7 years later, I can eat things with vinegar if not too much. Anything spicy and my tongue burns like crazy. Needs milk to calm it down.
Eileen
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Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#3622 09-08-2004 01:16 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Christine, I must echo you here since I am also an English teacher although of a Chinese race. I have always been puzzled by 'loosing a lot of weight' and think that American English is different. My husband reminds me not to be too picky on people's writing as long as I understand what they mean. Difficult but I'm learning and it seems that I become more tolerant and accepting after my illness. A good side effect!
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#3623 09-08-2004 03:22 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I have lost a lot of weight,
I will try not to lose any more.
My dog ran off and is lost, because he broke his chain and got loose. I hope I don't lose him.
:p
You are right Karen, American is a different language. (but then English is not the most sensible language either)
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.
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