Rachel,
Why is your Mom having ALL her tooth pulled? Where is she being treated? Are her teeth in that terrible condition? Years ago they used to pull any teeth in the field of radiation. They no longer do that if teeth are in good condition. Obviously the teeth in jaw bone area need to go for surgery, but what is the reason for the rest? She may want a second opinion on that if you don't get a reasonable answer.

Take care,
Eileen

David, thanks for the advice. Mom is in her 5th week of radiation/Erbitux. She's down to 101 lbs. Last week she had enough of the pain and asked her rad. dr. about it - he said "what do you expect me to do?" Can't believe he said that. She told him she didn't know what she expected/she didn't know what was available. He gave her something that starts with Calph??? to swish around in her mouth for the pain and she said it works good. Don't know why he didn't give it to her weeks ago!!!! Also, she doesn't have a port so when they went to put in the IV last week for chemo they had a ROUGH time. Got the best two ladies in the place and they had to try 4-5 times before they got in. She only has one more chemo for now so they won't put one in for that, of course. However, she said the dr. may want her to continue with the Erbitux for "awhile" after radiation is done - we'll find out July 1st if that will happen and for how long. I'm going w/them and we're talking about a port! I learned a big lesson if I ever get cancer - I'm getting one of those. The lady also said she was surprised that Mom didn't have a feeding tube. Mom asked the rad. dr. about that too and all he said was "you do know that is a surgical procedure?" Needless to say, I'm so impressed with this guy. And... he never smiles. I have a question for you. The lady told my mom that feeding tubes were usually permanent because they make a hole in your stomach and they can't really go in and stitch it up. Isn't there a temporary feeding tube available???

Rachael,
Thanks for the good wishes. I'm so glad your Mom gave you the proxy because I know how it feels to just get bits and pieces of info when they go to the dr. and you know... there's more! That's the way it was with my parents. Even with both of them going they either weren't telling me or couldn't remember (I think this was the case) everything the dr. told them. Now my Dad asks me about my days off because they like me coming with them. Mom only has four more radiation treatments (unless they decide to add more) and one more chemo. At her last chemo treatment, they did say that the dr. may want her to continue getting that for "awhile" after the radiation is over. We'll find out about that on July 1st and I'm definitely going w/them for that appt. You hang in there and I'm sending nothing but good thoughts your way!!! Take care.

Nancy T.

Nancy,

WHERE IS SHE BEING TREATED.....AT WALMART??? P.S. no offense Walmart, I was just trying to make a point. Truly though I think her rad guy must have gotten his training from a photo shop.

I can't believe the things you just told me!!!

First off she can still get a port (and believe me it's still apt to be useful if their having a difficult time finding veins now and she has 1 more chemo left to go) and no Peg that I know of is permanent and the hole I believe heals itself but remember I didn't have a Peg. How long one keeps the Peg in post Tx depends on many factors including how well she can eat on her own.

Nancy, please try to ask for help from someone else. How about your mom's chemo doctor? Since the rad doc isnt a very kind person and you dont get anywhere, then go over his head. Your mother deserves to be treated fairly and humanely. There is no reason for her to suffer with the chemo needles or be in pain.

The nurse who told you about a feeding tube being a permanent thing is also not competent. I had one for what seemed like forever, longer than most people have theirs at 1 1/2 yrs. Please advocate for your mother. Remember the squeaky wheel gets the grease.

Best of luck with everything.

I posted once at the end of April. Now we are at the VA clinic for treatment. Justin is in 3rd week of chemo, carboplatn, Erbitux and RT. As soon as I can learn how to change my signature I will. He has base of tongue, mets to spine (6th cervical) Lots of pain in back and right arm. He had 12 rounds of RT on spine and has 31 rounds to go on front of neck...RO says into voice box. He is very sick and has all side effects Listed. Changed today from 40mg of Oxycotton to 50 Fentonal patch. He gets chemo every Tuesday. He has slept all day. I am 4.5 hour drive from home, 6 hours from family. we rented a condo to be closer to treatment....so alone. I cannnot leave him. He seems to have a lot of grugling (flem) in throat. Snoring never snored before this. I called American Cancer today to see if I could find a support group. None in this area. Need support. can I hear from anyone?

Nancy, PEG is not permanent. After removal, the stoma (hole) closes up on the inside and the outside after a few days to a week. It does leave a navel-like scar on the outside. I speak from experience, being now on my third PEG.

Pre-radiation, a PEG is often placed by a gastro-doc, using an endoscope down the throat to help, and these are usually the larger PEGs, which are far less likely to clog. After throat surgery or during radiation, the PEG is likely to be placed by a radio-doc, using fluoroscope to guide it and is usually a smaller PEG, more likely to have clogging problems.

Spouse of Ryan,

You will get many more response to your posts if you start a new thread. Just go to the "Forum List" at the top of this page. Pick the section that you feel your post fits best in...yours might fit best into "Coping/Anger Fear"...then up at the top, click on "Start new Topic" (or thread).

We want to support you...it sounds like you are going through a difficult time. My husband used a portable suction machine for that awful phlegm. I used the OCF as my support group. There are so many great people here!

David, Christine and Pete, thanks for all your responses and advice. Mom went for her last (hopefully) chemo this past Fri. and was very happy to hear from one of the nurses that this should be the end of this round. This time they got the IV in first time (we were so relieved). Today was her last radiation treatment. We have an appt. w/her chemo doc on 7/1 and I'm hoping that he won't dash her happiness by saying she needs more of anything. Of course if she needs it, she needs it, but if she does WE ARE GETTING A PORT. Her attitude is still wonderful. She was craving the soup part of oyster stew last week so my husband made her his specialty w/lots of whole milk and butter. She's looking forward to actually eating more so I'm hoping she will gain on her own. When she went back and talked w/the nurse of the dr. I don't care for she told mom that they (she and the docs) had discussed the port and the feeding tube and decided she didn't really need it. If another round of chemo or rad. is ever needed... we know better now. Thanks for listening to my ramble and for all your wisdom. Sometimes you learn the hard way... unfortunately for my mom. She's still smiling and appreciative and I love her so much. Ya'll take care and I'll keep you "posted" !!! And, again, thanks to all of you for being here - I appreciate YOU.

Nancy

A lot of us, me for one, learned the hard way. That's why I post so others won't have to.

Lets hope for the very best.

I was born and raised in Richmond. Is she being Tx'ed at VCU or do they still call it MCV?