Trying to find my way around. My name is Linda and I'm a cancer survivor but not head & neck. I'm here because I've been working with patients going through oral & Head & neck cancers for the last 15+ years.Have been focusing on the dry mouth/xerostomia problem so often seen in survivors.The article on "Wonders of saliva" by Rosie Mestel in the website needs updating. Dr.Bruce Baum (mentioned in the article)is currently using Aquaporin gene therapy to create saliva in people with radiation-induced xerostomia. Currently, results are temporary but favorable without side effects. The current study is a Phase 1 trial at NIH to prove safety and best dose level.The goal is to use gene therapy to create saliva on a long-lasting basis. Anyone interested in more information ?

I sure would hold an interest in that Linda. My mouth gets so dry, that everything left in it sticks like it was super glued. I for one am glad to see this post of yours. Jim

Good to hear from you Jim and glad you have been cancer free for 1+ years.We are working hard to extend this therapy to all those with dry mouth. Right now the FDA has mandated that all people participating in the study be cancer free for 5 years. If you're interested in following the results of this trial and being added to the list for the next, check out www.drymouthstudy.com . Have you tried the usual things for dry mouth relief? Thanks. Linda

Linda,

Thanks for posting that and welcome to the site.

hello I am new to the forum and just got results in that I am at stage 2 head and neck cancer. I started going to drs in april 09 with ear ache and two weeks ago had toncils removed waiting on a pet scan set up my peg medi port for chemo I am a thin guy only 128 pounds so my dr did an albrumin? test to see how healthy my body (nutrition wise) is. she called me skinny minny and i would be lucky to reach 1.0 to a 2.0 She came back to see me and admitted that she is totally floored by the fact I was at a 5.1 level which she looked at me and said that her level was at a 3.5 meaning that skinny miny was actually healthy than where the dr her self stood at least that made my day! Wait till she see's my immune system! I have been taking curcumin,ultra blue green algae,garden of life "perfect food" super green formula.also eating fresh organic red green yellow and orange bell peppers raw. all this before my radiation and chemo starts hope this plan works what do you all think? I am totally new to all this but getting a crash course in my disease. Any in put will be appriciated thanks and hello donald

Donald

You may want to open a new thread specific to yourself. I am not so sure why you think your albumin score means anything. I have a 4.5 Albumin score and that is after one disaster after another. (most recent albumin score test was Dec 16th, 2009) The acceptable range for Albumin lab reports is from 3.6 to 4.8. So while I WELCOME YOU to the OCF forum, I personally think you are going to be unpleasantly surprised just how little super nutrition and exotic diets help you in dealing with radiation and chemotherapy.
charm

LindaNIH

As you can see by the fact that your post and thread have been 'hijacked' the introduce yourself forum is not optimal for you.
I wish to welcome you to the OCF forum, but suggest that you post your thread again in the general forum or the survivor forum. Not very many of us active posters have been free from Cancer for over 5 years.
I would love to have qualified for your study but alas, I do not meet the criteria with a recurrence of cancer as late as February 2009.
Please post a direct request for people over 5 years out on the general forum with a link to your NIH study. Although it is depressing to think that people would still have a saliva issue or dry mouth 5 years after being Cancer free. My dry mouth disappeared entirely once I could not swallow after surgery. I have more than enough saliva and mucous.
Also what updating would you suggest to the Wonders of Saliva article? I did not find it on the web site, so if you could post a link along with your suggestions as what needs to be updated, I would certainly be interested and follow thru with the site administrators (like DavidCPA, Gary and the founder Brian). It is important to me that OCF always be the most current source of oral cancer information.
Charm
Charm

Charm,
Thanks for your suggestions. I will try the suggested posting in general or survivor forums. Still need a forum roadmap to find my way around. The article I found when first exploring the website is found under "dental complications". Scroll down several paragraphs to the highlighted "saliva", click on the word and it will take you a longer article on "Wonders of Saliva".Within the article, almost at the end, I read a quote from the NIDCR institute director ,Larry Tabak, stating that "gene therapy is years away". Ironically, I am working with a gene therapy study supported by Larry Tabak. Thought the information in the article was older and could be updated. I really like how the rest of the article is written in a humorous and uplifting style while being very informative.Please let me know if you need information for the update. Also, sorry to hear about your recurrence.
Thanks.
Linda

Linda, I just noticed your answer to my post. Sorry for the delay. Yes I have tried the normal dry mouth solutions and they don't do much at all. I don't think I said I was cancer free but sure wish so. I have an MRI the 12th to see what goes with it. Thanks for the invite and if I am here in 5 years, I will do anything to assist others fight this garbage. Heck, I can'r eat enough to get anove 162 lbs.