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#61078 06-10-2007 08:26 AM
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Minnie, you and I did it the same way. It was almost convenient....


I am glad that thing is gone ! <<grin>>

Kevin


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
#61079 06-10-2007 08:56 AM
Joined: Mar 2007
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Hello All

I have been blessed with a very good memory. (I'm not saying it makes me very smart! :rolleyes: ). But I remember almost everything I read.

If you look in "After Treatment Issues" there is a post by "jordan on 5-22-07" titled "Does it hurt to have PEG removed".

The fifth response was by "James Haucke". Please read his response. His peg (of 3 years) had become embedded in his stomach. It was stated that they should be changed every six months.


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#61080 06-10-2007 09:56 AM
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UPON FURTHER REVIEW!

Minniea, Mommapez, and Jam. I just realized by reading the whole thread that you three responded to jorden's aboved mentioned post 11 days ago, all in the same hour in sequence.

I quess you did not read everyone's response, and answered jordan accordingly. I assume this is why you did not recall it.

This is valuable information that I thought should be brought to your attention.

Sincerely, Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#61081 06-10-2007 02:34 PM
Joined: Aug 2003
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Petey,
It was nothing personal when I said it had never been said to me that the tube needs to be changed at any intervals. If I'm going to keep it in for three years, such as James did, then I would suspect it needs to be changed. Most of us don't have the tube for that amount of time, usually well under a year after treatments end so no need for the changes.
If one of your doctors said that to you, wonderful, he must have his reasons for saying it. What I stated is that I never had it changed and I was never told it needed to be changed. I stand by what I said.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#61082 06-10-2007 08:11 PM
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Hello Minniea

I did not take it personal and I hope no one else did. We all seek to help each other and we are a team, an army, against this hideous disease.

I have never read anything as intensely and extensively as this forum in my entire life. My old habit of reading the newspaper with a cup of java as my first task of the day has been changed to reading this forum with a cup of java. Some days, after reading here, I have no desire to read the paper.

I am sympathetic to those here who have had to keep the PEG permanently. And the very valuable, knowledgeable and compassionate senior members, such as yourself and many others should be aware of the need to change the PEG periodically.

I am now curious as to what the appropriate time period for a change is. Maybe it should be yearly as many have had a PEG for that period of time and removed with no problems. This would make the stated 6 month change an unnecessary invasive procedure.

I defiantly do not want to create any animosity here. We are dealing with extremely grave situations and there is no room for any petty differences.

We are all in this war together and we need to stay together as one in our fight against this insidious disease.

I am sending my prayers, love and compassion to all.

Sincerely, Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#61083 06-10-2007 08:44 PM
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When Rob was in hospital having his PEG fitted he was under the care of a specialist nurse and a nutritionist.On the day he was due to be discharged they came amd gave us a tutorial on how to administer feeds via the tube.This consisted of a bottle of feed,a large jug,a 50ml bladder syringe and sterile water.A flush of water was pushed through first followed by the feed drawn up from the jug in 50 ml measures.This was then flushed through with water.The whole procedure took about ten minutes at most and the only issues were with the quantity his stomach could tolerate,apart from that the whole process was trouble free.Once a week the PEG is unclipped,and pushed backwards ,rotated 360 degrees and then pulled forward and clipped back in position If the person in Petes post whose tube "grew in" had been moving and rotating his tube every week it couldnt possibly have become embedded the moral of this story being i dont think there are any hard and fast rules it depends on the hospital concerned.And Petey remeber your PM to me about reading to much into peoples posts!!! eek


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#61084 06-10-2007 10:21 PM
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Hello Liz

Very good input on the PEG.

I'm standing in the corner with the appropriate hat on! :rolleyes:

Thank You.... Petey smile


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#61085 06-11-2007 03:26 AM
Joined: Aug 2003
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I agree, good input Liz. I DO believe that many aspects of our individual treatment depend on the hospital and doctors that we have. There are tons of things we go through that have no hard and fast rules, different ways are used by many and all work in the long run.
What I was trying to point out to Petey is that ME, MYSELF AND I, had never been told by MY doctors that the tube needed to be changed. If James Haukes docs said that, great for them. I can only give MY experience, which, by the way, was far different from James who had his tube for 3 years. I am willing to bet that there are exceptions to almost all the rules of treatment.

Petey, when I first found this site we had a hurricane here that took out our power for over a week. My husband went and fought the crowds to buy a generator so I could have power to stay online, he could see how much the board was helping me deal with my fear and anxiety as I had just completed my treatments. Allow the board to help you in the same manner, that's what it's for. At the same time don't read to much into someones postings.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#61086 06-11-2007 10:11 AM
Joined: Feb 2005
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My doc here has said the PEG doesn't need to be changed until and unless it is causing problems. Every time a new one is put through the stomach wall, the opening can get enlarged and there can be more leakage. If you have your PEG really long term, like I do, I would ask your doctor.

I have seen several doctors in the two years I've had a PEG and never heard 6 months.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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