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#91235 03-05-2009 07:55 PM
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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
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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
Joined: Sep 2008
Posts: 489
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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
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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
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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
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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
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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.
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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
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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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Posts: 3,082
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Actually, federal employees who were hired before 1984 and stayed under the old Civil Service retire System (CSRS) and were not tricked into switching into the "new" Federal Employee retirement system (FERS)which is the only option now do get raises most every year. It is called a COLA or cost of living increase. all CSRS pensions wenr up 6% (yes six percent) on Jan 1, 2009. However the numbers vary each year and that was the highest in 20 yrs. Next year looks like only on epercent. It is why my dad always told me to get a job with the US "Uncle Sugar" Now feds are covered under Social security. Most CSRS pensioners never get any social security payments and the few who do are subject to an offset. Both paid Medicare taxes though and get that.


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
Joined: Dec 2008
Posts: 1,004
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That's interesting. I thought COLA was only a rider on a life insurance policy...


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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Thank you Pete. I did get some discounts on the medical bills and then they rolled them all into one note that I pay monthly on at a very low interest rate.

If I had any idea at the time that it was cancer I certainly would have done more and sooner. From the look of it I thought that I had stabbed myself with a potato chip or something. When it did start to look like something I should be concerned about I had the biopsy in 2 two days. Another reason for all of us to be informing people about OC. Prevent the results of ignorance of the disease.

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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Cola is a guarantee that you can keep your Ins for a certain period of time if you get laid off but you have to pay the premiums. Most people can't afford it anywat and forget it.


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: 595
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I hope that you had REAL Vermont Maple syrup with those pancakes and not that fake store bought stuff (lol) !! Good luck and best wishes for a speedy recovery!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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EZ JIM
I think you mean COBRA for insurance COLA is Cost of Living Adjustment for some pensions including social security


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
Joined: Sep 2006
Posts: 1,334
"OCF Canuck"
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Bob: Surely you mean real Canadian Maple Syrup???


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
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COLA for life insurance is an offer to increase the amount of insurance without having to go through and medical....


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: Jun 2007
Posts: 5,260
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LOL Damn, I sure did mean COBRA,, sorry for the mistake. Pain erases memory at times LOL I stand corrected big 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: Sep 2008
Posts: 489
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[quote=Bob Whyte]I hope that you had REAL Vermont Maple syrup with those pancakes and not that fake store bought stuff (lol) !! Semper-Fi Bob [/quote]

I doubt that it was the GOOD stuff - the hospital made them I was lucky that they were somewhat warm. smile Thanks Bob.

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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The Vermont maple Syrup at Sam's club is over my budget, but one day I hae to get some. My Mom always made her own back in the 40s and early 30s. Delicious.


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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I'll buy it for you Jim:)


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: Jun 2007
Posts: 10,506
Likes: 2
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Thats so nice of you Suzanne smile


Christine
SCC 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 smile
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You are so sweet Suzanne to offer. For one so young you have a lot of knowledge and common sense. That is one lucky guy you are marrying.


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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The amount is enormous whatever it's for. I have an itemized statement somewhere. I tried for the discount but was told, Sorry, we can't help you there. LOL I will say the lady I talked to tried her best to help.


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 treid something different last nite for supper. I bought some breaded veal parmesan and some dressing for chicken. I made the dressing very wet using 1/4 lb of creamry butter and made the breaded veal with the sauce in the nuker. Hey, he 1st couple of bites were very tender and delicious. I at it and enjoyed. Yhinkin maybe tonite I enjoy again. Just the right amout of cheese on the veal too. It didn't stick in my mouth for me to finger it out.


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: Sep 2008
Posts: 489
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Jim that sounds really good. I love stuffing and I might be able to get some down if it was really wet. I have been craving lasagna and I will be having it someday. First to get my esophogas opened back up so that things will stop getting stuck in there. I do not mind putting my finger in my mouth, I just hate choking out my food.

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
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Posts: 5,260
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LOL You have me laughing Patty. I use the boxed dressing with about 3/4 cup of extra water and a lot of butter and add a good margerine if it needs more moisture. When are they going to dialate your throat? It never seems to hurt when they do it. Good luck and if you need a cook, I can be bribed. LOL


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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LOL...you guys crack me up!! I hate using my finger to get the food out. But I say hell with it and in I go!! All this talk sure is making me hungry!!

Jim, thank you for a such a kind compliment. I feel pretty lucky to marry Ray too!!

Sometimes I laugh because I picture all of us in our home with our families around us and we're taking our pain meds...pulling food from our mouths with our fingers "talking" to each other and enjoying each others company. Isn't this an awesome group?

xoxo


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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Posts: 5,260
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I bet we all look like we are from the board of mental retardation home. LOL I like those poor people too so we would fit right in.


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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Yep!!! I bet we would fit in:)


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: Jun 2007
Posts: 595
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Jim, Sugaring season is in full swing here in Vermont, if you want some REAL Maple Syrup let me know and I will see what I can do for you!! Semper-Fi Bob


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Joined: Jun 2007
Posts: 10,506
Likes: 2
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Hey Jim.... Did you try that Smuckers Blueberry syrup yet? I think by next week I will be up to pancakes again so Im looking forward to it. Let me know how the real maple syrup is. What is the grocery store chain out your way?


Christine
SCC 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 smile
Joined: Sep 2008
Posts: 489
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[quote=EzJim] When are they going to dialate your throat? It never seems to hurt when they do it. Good luck and if you need a cook, I can be bribed. LOL[/quote]

I have to go see the ENT so that we can schedule my "opening". I am glad to hear that it does not hurt - everything else has. I got the results when I went to see the dietitian. I love these integrated computer systems!! LOL

I would love to have a cook. My biggest problem is wanting to get in the kitchen and cook something. I bought two no chew cook books in the hope that it will spark some interest for me. You are just next door come on over. LOL

I also have a very big oval dining table with two leaves so we can have Suzanne and the wloe gang over for dinner and pain meds. ROFLOMAO

Patty

Last edited by Good1; 03-15-2009 04:29 PM. Reason: added something i thought was funny

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
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Patty..I can't wait!!! I'll bring the lobster bisque!! That goes down really good:) I'll also bring the Ultram, Percocet, Vicodin and of course....the Senekot!!!


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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Suzanne
Is that the menu for your wedding reception?
Seriously, best wishes on your big day - We had our reception at a now defunct Nepalese resturant in DC, the Katmandu and I was curious what my meat and potatoes relatives would think of an exotic cuisine. No worries: my favorite uncle came up afterwards and said it was the best Chinese food he ever had wink


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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Christine I did get to try thr blueberry. From what I could tase, it's very delicious,


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
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Glad you liked it at least the first bite or two. What grocery store chain is out your way? Different areas have different stores.


Christine
SCC 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 smile
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lol...yes we are having a buffet of different meds. Don't you think that will go over good? And...we're having an open bar, it should be interesting!! I'm really looking forward to my wedding...thank you Charm:)

xoxo


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: Jun 2007
Posts: 10,506
Likes: 2
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Hey Jim:

Im back to eating pancakes and boy are they good!!!! The blueberry syrup is very tasty. I did buy some real Canadian maple syrup. You are right, its very expensive $5 for a small 8 oz bottle and that was the regular store brand. It was $15 for a larger bottle. You only need a tiny bit of the real maple syrup and it tastes so much better than the other kind. I mix the real stuff with the blueberry and its so good. Best part of the real syrup is that it does not burn my mouth not one bit. You gotta try it!!!!!

My store doesnt carry those other fancy kinds of syrup like you get. What store do you shop at?


Christine
SCC 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 smile
Joined: Sep 2008
Posts: 489
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Right now at the Wildlife Sanctuary here they are letting you come out and tap the maple trees and teaching how to make syrup. It would be fun to do once I guess.

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
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Patty , I shall be your willing test pilot for the adventure of home made maple syrup.


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: Sep 2008
Posts: 489
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Well Jim as soon as I am able to haul a bucket to the tree we'll try it. I really need some enthusiasm and help with the eating department. I just can't get motivated to make even soup. I have been having a shake in the morning and then I drink water through the day, but I really need to try to start eating. I think that part of it is I am afraid to do it by myself in case something happens. I know that with cream soups and stuff the risk is nil, but I am afraid to do mac-n-cheese or the other fun stuff that we have been trying in therapy by myself. I guess I will make an IM deal with someone and if I choke they can call 911 and then send them a mapquest map to the farm.


I hate being a weakling!! Yesterday I moved some mulch to my Blue spruce tree. I got a large kids tub that is bright yellow from my nephews. It is about 3 feet deep and about two feet around and has rope handles on it. They were going to throw it away and I can't stand to see useful things wind up in the trash.

So I put about 5 armfuls (can't use a shovel yet) of the mulch from the pile behind the garage in the tub and then drug it up to the tree being very careful to use my left arm, not my right arm where my flap is and then dumped it out as close to under the tree as I could and sat down and kicked it around until the area under the tree was covered. This was my big chore for the day. The rest of the day I walked around the yard with a hand spreader putting fertilizer out on the grass so that this rain will soak it in.

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
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Posts: 1,128
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Be sure not to pile stuf around the base of the tree where the bark ends -- A sudden buildup in that area, esp with dirt, but even with mulch, may actually kill the tree!


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.
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Patty, I keep a botle of water at all times just for that reason. You are going to make it but if you have to get a canteen and hook it to you somehow. You need more than what you are eating. Force it and yes I know it hurts. Remember dear , it's for your strength . I say this as I drink my coffee breakfast before I head for this appt. LOL I have to be on the road in 10 minutes. What I need this morning is a mucous chaser. It is a bad morning for the goo.


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
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Yes trees need to breath at the base so it's always advisable to actually clear the soil and mulch a few inches away from the base of trees.


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.
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Just don't add above the graft of the tree at the bottom. It has to be in the clear above any soil or whatever.


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: Sep 2008
Posts: 489
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I have to run out and get some of the mulch back away from the base of the tree. I did not know this. All that I read was to mulch out about 3 foot around the tree to help in moisture retention. I also thought that it would be good not to have the grass growing up under there so that I did not damage the tree when I mow. I'm a little reckless on the lawn tractor sometimes.

Thanks - you guys are gardening experts too lucky for me.

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: Jan 2009
Posts: 225
"OCF across the pond"
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Martin is also back on pancakes, but the thin French types Crepes). He drizzles maple syrup and it is expensive here too. Only one brand and it is 4.00 for a little bottle which is about $5.79. I didn't realise it was also expensive in the US, I thought it was just here because we import it. It's worth it though it's delicious and nutricious well it has lots of calories and it taste nice anyway.


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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The typical fibrous root zone of a tree can extend about 1 1/2 times the diameter of the tree's drip zone. The faster the growing a tree is, the wider the root zone usually is. Younger less established trees need more "free area" for their roots not to be in competition for water and nutrients. Older, more established trees can do just fine without a mulched zone.


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.
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Cecelia the crepes sound wonderful. I did not know that they did not produce syrup in the UK.

My little blue spruce is only about 3 years old so I gave him some mulch. Two years ago when I bought the house he was looking a littly puny, but with lots of TLC he is now looking good.

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
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I have planted trees off and on for ---- years LOL and never had one pass away yet. I ordered some 2 red maple trees for the hiuse my ex has now, and plated them in the front yard . One started to die or so I thought and just let it go to see the results of my treatment. That tree is half red and the other half is dark green. U have to go trim it for her one of theses days. It's just about out of hand from being ignored, That is a one of kinder being 2 toned and all.


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
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Man I know I hurt but not as bad as I am typing and hurting words. LOL


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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2 others I tried today.. they are good together.. I took some frozen crinkle cut sweet poataoes out of the freezer.. got out my egg poacher and made dinner...Watch when you French Fry the sweet poataoes, as soon as they begine to float, get them out of the oil. Put them on you plate and then when your egg is poached, put it on top of the potatoes. mash them together with you fork and go for it. I had to do it 2 times because mashing them made is easy to finish off with this sore tongue.. Christine and Good1 will like this I bet


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
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Great news, the menu is expanding smile

Sounds like something Im gonna try. I ususally just mash the sweet potatoes and mix them with my regular mashed potatoes. Red skins have the smoothest texture.

I made glazed carrots yesterday. Peel, chop up very small and boil for about 15 minutes about 3 fresh carrots. Then sautee them with butter and brown sugar for a few minutes. It tasted so good just to have a different food.


Christine
SCC 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 smile
Joined: Sep 2008
Posts: 489
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I have not tried a poached egg yet. Since the PT is loosening up my neck and I no longer feel like someone is choking me I can swallow better. Now I hope to start trying foods again. It has been very difficult to swallow and I have been staying with liquids to avoid the pain.

I'm having two friends visit next weekend and while they are here I thought that we would try one of the no chew foods from the cook book. Once my confidence improves it will be easier for me to eat more. Right now I'm just plain scared.

Darn OC - used to be that nothing scared me.

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
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Posts: 5,260
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I been swallowing the soft foods , but you know what? I am scared everytime i put something in my mouth. Just a few minutes ago I had a cake donut that I warmed up to make it softer and then would take some water to help it go down. Damned if I didn't get it stuck anyway and now have donut and water on my shirt. LOL Bib time for me.


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: Sep 2008
Posts: 489
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With my flap I just have to mash everything up to the consistency that it would be if I had already chewed it. And I have to take small bites. Then wash it down with a thicker liquid than water. The therapist said that she was comfortable with me using a nectar consistency. I'll get brave again once I don't hurt so much. Lately it has been hard to just do the day to day things without adding any thing extra to it.

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
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