I had my peg put in Thursday, was kept in hospital overnight, and yesterday had a Power Port inserted in my chest. Both procedures were done under "moderate sedation". It wasn't nearly moderate enough to suit me! Both Docs claimed they gave me lots of meds and were surprised that I was so lucid throughout. But, I got through it.Today, I hurt like hell at both sites. I haven't seen any posts about getting a port. Can anyone share their experience.

On the positive side, my PET/CT scan only lit up the tumor in my throat. Lymph nodes and lungs clear. I think I exhaled for the first time in about three weeks. It looks like my train is finally going to leave the station. IMRT (7 weeks), and Chemo (Erbitux weekly), start on Tuesday the 13th. Finally, I can start marking X's off my big wall calendar I bought just for this experience.

Hi Jellybean,

I did not have a port but I know that many here did, so I am sure you will hear from someone.
I had the Peg Tube and it was a blessing. Just make sure you keep it clean. They will show you how.

Will be thinking of you on the 13th. Hope you have someone to help take you to treatment. You can not do this alone. You get very tired as time goes by.

Yes, we all had our calendars. Ha ha!! I made mine on the computer and put funny pictures on it. Just for fun. I still have them.

Wish you the best and glad to hear that the lungs and nodes are clear.
Take care,
Diane

I just marked my Nuke sessions in my little calendar-planner book so I can compute the mileage when I do my taxes (It's a strange world when we hope we will be able to do our taxes many times!).

What is a Power Port?

I did a quick search and didn't come up with anything -- I have this vision of something like a PEG with a miniature sink garbage disposal unit attached to it for grinding stuf up and shoving it down the tube... Walking around the house, trailing the electrical cord behind...

BTW, to keep my PEG out of the way, I used a round-my-neck holder that come with a USB memory device -- Had a quick dis-connect, so I could free the PEG hardware when desired -- Didn't have to mess with tape.

jellybean,

I got my Peg and Port on the same day and like you I was sedated but not enough. I remember the PEG quite clearly and felt everything they did. The Port was a much nicer intallation. I have met several folks who were going through or went through chemo without one. I'm very glad I had a Port, I am Ok with needles but I couldn't imagine all those pokes or a picc line dangling. The Port made everything very easy and painless. I would only have it accessed for 2 days at a time. That way I could take a good shower every other day. Getting them out was really easy too.

Good Luck
Tim

[Pete, you've got an interesting imagination]

Hi, JB, my hubby had his port put in before chemo started. Boy has he been glad to have it! His veins are hard to hit and blow out alot - so the port has been great for him and never hurts. Good luck and stay strong. Amy in the Ozarks

I didn't have a port but had the PEG. It was a pain to deal with but a lifesafer nonetheless. The nurses weren't kidding when they told me that about 3 weeks into radiation I would not be able to swallow a sip of water. That condition lasted until about the second week post Tx.

The worst part just to be up front about it was removal of the PEG. The nurses also were not kidding when they had told me earlier that "we just grab the end of it with you lying on the table and jerk it out". I thought they were having fun with me when I had asked but no, I found out they were serious. That's exactly how it was removed. Nurse said to hold on as it will be painful for 3 to 4 minutes. That time she lied as I saw stars for at least 5 to 6 minutes but then the pain subsided quickly. Surely there has to be a better way to do it this day and age!

Bill D.

Hi,
Can I ask if anyone can give me an idea how long the peg is left in after treatment ends? I am half way through 6 weeks of radio/chemo and have a peg which I haven't used as yet, but I realise I may have to in the coming weeks. I have not lost any weight so far, in fact gained a little. Does it all depend how the next few weeks go or do you think it will be linked with the post tx 3 month scan? Apologies if this isn't the best place to post this question!
Thanks Bill for the honesty about whipping that tube out - I rather thought it might be like that!! Glad you coped:)
best wishes to all

Hi, Georgia, sounds like you are doing great so far! As long as you can swallow enough liquids and good nutrition, you may be able to lose the peg shortly after tx. ends. It is there for insurance that you can get what your body needs to function and recover. The hardest part for people without a peg is maintaining proper nutrition, which is hard to do unless you get on the "Boost, Ensure, Carnation VHC, etc". HOme cooked soft stuff with enough calories, vitamins and minerals is tough to do. So don't be too quick to yank it. And keep going-you are doing great. Amy in the Ozarks

GA,

It all depends on how much you can take in by mouth. Mine came out 3 weeks post Tx. I still had throat pain but I was able to swallow Boost,VHC, soup etc...

OK, I infer that a Power Port is a port into one's circulatory system, not one's digestive system.

I kept my PEG for about two months post-rad, but didn't use it much the last month except to flush it with water -- The Gastro-Doc wanted me to be sure I wouldn't need to have it put back in! Of course, the quicker one can start swallowing one's liquid food, the better that will be!

The Gastro-Doc, hovering with the nurse over me on the exam lounge, gave me the choice of $$ outpatient surgery w/anesthesia or the Yank and Leave Now option -- Forewarned by reading this group, I chose the latter and it was over in seconds -- A brief sharp pain and that was it for me -- Strangest thing was that when he pulled the tube and it was going away from me I felt like the **tube** should hurt, like it was part of my body and still connected to me nerves -- It all healed just fine (except when I bend over and my shirt gets wet...)

My PEG was my friend, but I don't miss it!

BTW, some of us experience weight loss and some of us don't, and I really don't know why that differs. Chemo? General health? Surgical damage? Radiation damage? Genetics?

In my case, I held my weight to within a few pounds all during radiation and for months afterward (7x350=2450cal/day @ 170-174lbs). After I was on a mix of solid & liquid foods for a while, and my appettite had not returned but I felt somewhat stronger, I decided to cut back by a few hundred calories and lose some weight, which I did slowly, a few pounds per week.

Others report having no choice in the matter, they just flat lost weight throughout the process.