#59406 11-05-2006 10:19 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Most of you know, I am on a Peg/G tube for the remainder of my days here on planet earth. I recent months I have gotten off of "ENSURE", by utilizing my food processor and blender. Anything (Meat, Potatoes) can be liquified and ingested through your tube. I prepare my partially (Liquid) meals, days in advance with the food processor to the consistency of gooseliver patee. Then as required I place the Patee in the add liquid, usually broth and in minutes you are ready to feed yourself. Remember anything, and I mean anything can be liquified. Today I prepared Barbqued rib meat utilizing my 7cup food processor and slowly adding canned vegetables with liquid until I reach the consistancy desired. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#59407 11-05-2006 03:14 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hey, Darrell, good to hear you are doing well! I am curious as to how your weight is holding? Keep on keeping on! Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#59408 11-06-2006 12:13 AM | 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 | Darrell,
Good to hear you have mastered the blender thing. I am wondering, based on your stated Tx, why you are on the tube forever? Did you have surgery the 2nd time around? How were you treated? I am fairly new to OC but trying to understand as much as I can.
Thanks,
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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#59409 11-06-2006 02:55 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | I am one of those unlucky individuals whose epiglottis was severly damaged by radiation (malshaped). Everything I try to swallow, I aspirate, I cannot take a swallow of water. I use artificial saliva mixed with biotene mouth wash, in a spray bottle, to keep the interior of my mouth moist. I label my spray bottle OPS (other peoples spit) it fits into a shirt pocket, amd I use it frequently. When I first contracted cancer, I was a fatty, weighing in at a super-obese 370 pounds. I was adicted to food. I now weigh 192 pounds. My waist size at my largest was 58", now I wear a comfortable 38. I continue to loose fat but I have increased my (balanced) protien intake to burn the fat and add muscle. I am 62 yeras old so I can't have a 40 year old body. But now that I am in remission I feel good and try to excercise as much as possible for a senior. Love Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#59410 11-06-2006 12:33 PM | 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 | Darrell,
Sorry that you were unlucky but hey your still posting, so that's a good thing.
Is the damage to the epiglottis rare? Did they explain why you and not all others?
I found Carnation Instant Breakfast VHC which is a balanced supplement that has a whopping 560 cals per 8 ozs. It helped me a lot during the weeks after Tx (that's when I found it) because it cut down the amount I had to swallow to reach my caloric goal. It will cut down your feeding time as well. I still use it once a day.
Hang in there and your not a senior yet. My mother-in-law is 78 and if I called her a senior she would come after me. (with her cane...just kidding, LOL)
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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#59411 11-07-2006 08:41 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Darrell,
I have read on here of others having the same problem of damage to the esophagus & swallowing problems. They had it dilated and or some other procedure and have been able to swallow again. Is this not possible for you?
I am trying to remember who had it done. It seems to me there were 2 that I read. I think Nelie was one of them? Someone had to have it reopened from the mouth & going up the tube area as well. Maybe you have already researched this.
I just had my esophagus dilated 2 weeks ago. It had scare tissue in a web form and it would move up & down. It was hard for the technicians to see & almost missed it. That would explain why I was chocking off and on. I had my tube removed in August.
I wish there was something that can be done for you. There has got to be something?
Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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