Greetings all,

I'm in the middle of my treatments now. I had a round of chemo last week that really knocked me down....thank goodness for my mom and husband because they kept me from going back to the hospital. (i was quite ill) The radiation is going ok....the doctors are still waiting for the side effects to show up. For now I just have redness on my neck, no sore mouth or sore throat. Hopefully it will stay that way!!

My new tongue is coming to life, and the doc can't believe it's happening so fast. He even poked it with a stick to see if I could feel it...and I did! The cool thing is that I'm eating anything I want now. I wasn't expecting to do this until xmas, but all of the prayers behind me are really working. I also am talking fine, and can even sing again.

My question is...has anyone had a PEG removed? How do they do it? I forgot to ask my doctors and want to be mentally prepared for the next torture they inflict on me. They aren't always the nicest folks.

Thanks,

Nettypoho-
So glad to hear that you are tolerating the treatments so well. What is your secret???

My poor mother's mouth has been awful since about the second week of radiation. Thrush, sores on her tongue, and generally her mouth feels like it's on fire. Nothing really seems to help. Are you having IMRT as opposed to external beam radiation?

On the flip side, my mother has breezed through six chemo treatments. The only side effect has been decreased blood counts for which she is getting Neupogen and Procrit. Monday she will start bi-weekly injections of Aranesp. Apparently this is the latest, greatest for boosting red blood count and is longer acting. Anybody have any experience with it?

Keep dazzling your doctors - it keeps them on their toes!

Cynthia

Removing the peg takes about 30 seconds; I actually removed my own since I was in Santa Fe, a long ways from MDACC. Some like mine have a little thin wire in them that causes the other end to "pigtail" up once they have put it in. Cut that little wire and the tube inside straightens out and you just pull it out. A 2X2 gauze and a piece of tape for one day covered things up, and that was it. No leaks, no fuss, no muss. Other types have a small, inflated balloon at the end that keeps them in. Deflate the balloon and the tube comes right out. While I am not advocating that you take your own out, I mention all this to illustrate that it is no big deal. I had mine in for about 8 months after the completion of all the treatments... it was that long before I was able to get enough nutrition through my trashed mouth and throat. I'm glad to hear that your mouth hasn't developed mucositis yet, but in my case it really didn't show up until about the third week. Also, many get a longer course of radiation than 4 weeks, and with your short schedule, you may not have as many of the side effects that you read about from others here. Let

Netty.........You sound so good! Good news about your "new" tongue too. I am still amazed at how well I can talk after losing over two thirds of my tongue, and the more you talk, the better it gets! I had about 6-8 months of speech therapy just to fine tune things and to help with some swallowing issues I had but after than I was good to go.

Brians right about the PEG tube...snip, snip and it's gone! Absolutely no pain involved there!

It was good hearing from you....continue to keep us all posted on your progress.....the same goes with all the others going through treatment....it's good hearing everyone's progress. Although I don't know any of you personally, I read this board almost daily and I sometimes feel like I do know you. At least I know and understand what you are going through. Sincerely, Donna

Thanks everyone.

I was worried about the removal....there's not much information out there and what I had found before was scary.

I just hit my halfway mark with the radiation treatments today, and next week have my last chemo. I can't believe this is almost done...it has flown by.