Hi all!

I know it's been a while since my last visit- good to see a lot of familiar people still here! Penny is doing pretty good! Her daughter was married at the end of April and she was able to attend in good form. She is off all med's with the exception of an antidepressant which I think is helping somewhat. She does get confused from time to time- hard to say if this is her new normal. The thing is.. she is still so thin- again only 102 at nearly 5'9". She has the PEG still and will until Sept at least they say, but she really tries to do most orally. A lot of choking and then more choking..
and she can not open her mouth very wide still - so thus she really doesn't "eat" much. Have you any tips about swallowing exercises? She was to attend a class for swallowing but has yet to hear back from her ENT and guess she is reluctant to follow-up. That's just Penny. Overall she is nearly to the 6 month mark - and I'd say improving each day for the most part- just wish she could chunk up a little.

Be well all!

Sarah, good to hear from you and to know that Penny is progressing. Big question about "chunking up" How many calories a day is she getting? and what kind of calories are they? Encouraging her to swallow is good, but not at the expense of real nutrition. Is she doing mouth stretching exercizes? She has come a long way thus far. Give her a hug for us. Amy in the Ozarks

Sarah,

I posted the same concerns a while back. I was consumming everything in site. Sweets, fatty foods, anything and everything that used to be bad for me and I still wasn't gaining any weight. Just in the last month, my eight month post Tx, I have finally started to put back my weight on and people are telling me I look so healthy now but I'm probably in the worse physical shape in my life, sans my Tx period.

So now I am trying to cut back on all that good "bad" stuff I have become used to eating. It's really funny how before my Tx I never consumed 2000 cals a day; rode my bike 100+ miles a week and always seemed to have to watch my weight. Then after Tx until about a month ago I was consumming 3000 cals a day and I couldn't gain a pound if a million dollars was on the line. Now I may be going back to my old ways again. Just one thing after another with this damn disease!!

She needs to get her ENT or even just her GP to order some sessions with a speech/swallow therapist. All hospitals should have these therapists as part of their physical therapy department, or sub it out to a private group. This will help her with her swallowing and tightening issues. She really must INSIST and be her own best advocate. And I hope she starts supplementing her oral nutrition with some liquid nutrition through the PEG. Building up her strength and stamina is so important to this continued fight. Using the PEG to supplement will not keep someone from eating again. It's just a supplement. It just bothers me so to read about someone who is wasting away when they could have help with the PEG. I wish her well and hope she has the strength to be more persisitent about her aftercare needs. I see you are from Gulfport. The Moffett(sp) cancer center in Tampa with U of Fl has an excellent speech and swallow clinic. We hope to visit there sometime next year. My DH is permanently on a PEG(which we are thankful for each day) but we have some hope that they may be able to help him.

Angak,

I'm from Gulfport and I did actually go to Moffitt.

You are a long way from Tampa to know about Moffitt.

Your H's Dx was exactly like mine. Was he tested for HPV?