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#91235 03-05-2009 07:55 PM
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Good1 Offline OP
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Jim,

I purchased a small can of Chef Boyardee to try the same thing with. I figure if I can get it to the consistency it would be after I chewed it I can swallow it.

I had 3 small, mashed up, full of syrup bites of a pancake today and it was the BEST pancake that I ever tasted. I am approved for pancakes at home now. smile

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Mar 2008
Posts: 3,082
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you can actuallly taste things? wow . perhaps the wort part of the recurrence is that lost my taste needlessly doe to radiation. Congratualtions and ENJOY EACH BITE


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Posts: 489
Good1 Offline OP
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Charm,

I can taste things which is a surprise to me also. Some things do not taste like I remember them and sometimes things taste awful one day and good a week or so later. I have had the radiation 2X and basically have no tongue - just a little stub on the right side way, way , back there. I thought that I would have no taste buds at all. Possibly your tastes will begin to return also.

At first everything tasted salty, then I began to like chocolate which I wasn't crazy about before, I like more sweets now than before. Guacomole tasted like onions -yuk and chicken bullion tastes like salt - yuk. But the pancakes tasted just like a pancake with lots of butter and syrup. Ironic that pancakes were the last food ate pre-surgery too.

I hope that someday I can sustain myself without the PEG. For now I am learning different tricks to get the food in and how to be safe mostly. I just realized recently that it will be longer than I first thought before I am PEG free, but I am OK with that. I plan to be here for a long time as will you.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Jun 2007
Posts: 5,260
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I can taste the first bite and once in awhile the second. After that I am just getting nourishment. I see my Oncologist the 10th, which is Tuesday. I have a ton of questions for him this time.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jun 2007
Posts: 5,260
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I don't know if I can handle chef boy r dee. LOL I make my own sauce. I would be willing to try it if my offspring didn't find out. I'm glad you can taste and eat some food Patty.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Dec 2008
Posts: 1,004
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Patty..I'm so happy you enjoyed your pancake. That is really interesting that was the last thing you had prior to surgery. I wonder if there is relation? I'm sorry to sound ignorant but I have a question for you. You said you hardly have any tongue left. How does that work? That is what I'm scared of. My track record isn't great. Oh.. there was a thread out there that I said I was stupid b/c I waited so long to do something about my tongue. You said I wasn't and that was so kind:)


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Sep 2008
Posts: 489
Good1 Offline OP
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Joined: Sep 2008
Posts: 489
Suzanne,

Noone deserves to be called stupid or any other name for any reason. We all take care of things in our own way. I first found the slit under my tongue in either late March or early April and did not have a biopsy until July. I had no idea what it was at first and it truly did not look like anything menacing. I had no health insurance or job at the time. Once I was employed there was a 90 waiting period before I had insurance and I was operated on 5 days after my insurance went into effect. I did my first PET/CT and a lot of other tests out of my own pocket - well I will be paying for them for awhile, but you get my meaning.

I will send you a PM with the description of how my flap is and a photo or two if you like.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
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Posts: 1,128
Patty, be sure to be asking the people who are handling the payments about discounts -- Many times, all you have to do is ask and they will reduce your bill -- One time, having made the mistake of paying it all off up front, I actually got a check back from the doctor (Very rare, according to account lady! It's one thing to put less money in pocket and quite another to take some out!).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Posts: 5,260
I sent my 1040s to OSU. The Drs wrote me off but I am making payments to the Hospital until I die some day. The amount is well up in the thousands of dollars. I cvouldn't find the front of my 1040 for 2007 but mailed them the preceding and the next years. Like my income is going to change from year to year. Pensions don't give raises. LOL They just care about 2007.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
lol...I think pensions should get raises. I would ask about having the bill reduced. PET scans are a small fortune aren't they? I think around $20,000!! How could anyone pay that? It's madness!!! It's not like they are serving surf and turf while you're there. Just some radio active fluid for our enjoyment. It never hurts to ask...all they can say is no.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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