Hi again ... one of the things I forgot to to tell everyone is that I work as the marketing manager for the Ontario Dental Association. For more than a year I've been working on an oral cancer awareness campaign directed at dentists, the public and the media. How ironic eh?

April is Oral Health month and many of the dentists in Ontario are using this as an opprtunity to spread the news about risk factors of oral cancer and the importance of early detection. Visit our website at www.oda.on.ca.
:p

You can purchase thick water or a thickening agent you can mix in your water for exactly the problems you are having. I switched over to whole milk for the extra fat and calories even though I haven't liked it for 20 years or so. I also drank a lot of Boost Plus and Boost High Protein since it is so thick. I still remember how elated I was when I could take two gulps of milk from a glass. It took many weeks to go beyond the sips.

I'll check out the website. My wife works for an oral surgeon.

Ed

Hi,
Hi,

I also have a new forearm flap tongue created 3/8. I was eating in a week having a peg but not using it outside the hospital. I used Thickit available in Rite Aid in the US to thicken watery foods. Since about 2 weeks out I have been able to eat anything fairly well. Lots of thick items like sour cream. I am out 5 weeks now and my arm/ fingers are still sore but healing and am taking tylenol 2 a couple times a day. My tongue is getting more adept at swallowing items like rice which are harder to manipulate. My neck dissection site is getting less numb daily.
You will also improve.
regards,
Howard

Hi Cathy,
Welcome to the club, I am in Brampton, probably not far from you! I had a neck disection in Dec/02 and a partial glossectomy in Sept/03. It would be great to meet you.
Sharon

Cathy,

I've hit about the same spot as you (radiation started two Tuesdays ago). I met with a nutritionist this AM, and would highly recommend it. The following is based on my discussion with her, but everyone is different so you should discuss with someone!!

Since it's starting to hurt to swallow and subsequently brush my teeth, I needed high cal foods in the least amount of servings. She gave me me intake marching orders (1800 calories and 80+g protein for 5'6" weighing 125) with recipes that are easier to get down. I can get away with 2 frappes a day, but I had to order things like:

Benecalorie: 1.5 oz additive has 330 cal + 7g protein, and doesn't affect taste of anything (surprisingly)

Benefiber: 1 Tablespoon has 3g dietary fiber

Spiru-tein: adds protein and supposed to taste really good

The higher protein and calories are important to help your recover faster. If your body doesn't receive enough protein, it'll start taking it from your muscles and degrading them.

She also mentioned that milk and dairy products actually coat the throat/mouth and make that thick saliva feeling worse. She suggested Silk Soy milk as a replacement in the shakes. It'll give you the nutrition and calories you need, and may help with the thick saliva. Of all the soy milks, which I'm not a big fan of, this one does taste the best. Plus in a frappe - it's not going to impact the taste significantly.

I think I read somewhere on the great website that people took Robatussen (SP?) or other types of cough syrup to alleviate that problem.

Obviously discuss anything with someone from your medical team before doing it!!

Good luck!

Sabrina

Sabrina,

I backed off on the Spiru-tein for a couple of reasons. Tt is a strong detox and sometimes flushes a lot of the poisons out of the body. Much of the treatment including radiation is really a poison and I wanted the residual effects of the radiation to continue. Also, detoxing the body sometimes throws the body into shock and could compromise the immune system that is already taxed by the treatment. Just a couple of thoughts.

Also, you are correct on the Robitussen. It is an expectorant that should theoretically loosen up the thick mucous a bit. I take some from time to time when I feel the thick sinus drip in the back of the throat.

I kicked my calories up to between 3000-4000 when my weight kept coming off no matter what I ate. I went with the most unhealthy diet of my life with extra fat (lipids) in Boost Plus, 4 cheese lasagna with sausage and beef, polish sausage, whole mile, Boost High Protein, prime rib, pasta and other assorted high calorie, high fat stuff. I gained about 12 pounds after losing from August until mid March. The 12 pounds came on in seven days and hovered around this area for another month and I have gained about 5 more since.

Ed

We tend to be too pushy about our weight gain after treatment and feel very disappointed when we don't put on weight no matter how much we eat. I felt similar two years ago when I looked very skinny after treatment. Yet I think it unwise to begin an unhealthy diet just for the sake of gaining weight in a fortnight. The food with high fat and sugar may do harm to our health and taking it in excess leads us to develop other disease. Weight gain is a long term and gradual process. I stuck on all kinds of healthy food and managed to gain back all my weight in 6 months' time.

Karen

Uptown - I was starting to have the same thoughts about the de-toxing. Thanks for voicing your opinion. Now I'll def. bring it up to the Radiation Oncologist Thursday.

When I asked the nutritionist about vitamins to help with the skin problems, she said the radiation group spoke to her in the past about it. It sounded like they had similar comments (wanting the toxins to remain in the body).

Uptown/Karen - Thanks for the head's up on weight gain issues! She mentioned even though I'm not working out now (too tired, but darn it I'm trying today anyway!!), the higher calories probably won't make me gain weight b/c the body uses more calories to heal. Now I understand why she wants to meet with me weekly. I'm little as it is, and I can't afford to lose any weight. I looked anorexic (SP?) when I lost 10 pounds (gained back) following the surgery last month!

It's great you guys are looking after all us newbies!

Sabrina

Sabrina,

Are you familiar with essiac tea. It is a great story how it was developed and here is a website that has about the best product on the market, although all essiac tea is expensive:

http://www.cancer-info.com/essiac.htm

I have been having a lymph drain therapy for the past couple of weeks with laser. I really noticed when they did the detox therapy yesterday. Even my skin has been breaking out.

Ed

I hate to be the bearer of bad news but essiac is listed under "Questionable Cancer Therapies" on Quackwatch. We need to be careful on OCF that we don't give false hope to people with cures or remedies that can't be scientifically proven as efficacious.

See: http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html#Essiac

The information on the following link (from MSKCCC) also lists the warnings and precautions associated with essiac.

http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=441&tab=HC

Save your money...

The following is from Quackwatch:

Essiac

Essiac is an herbal remedy that was prescribed and promoted for about 50 years by Rene M. Caisse, a Canadian nurse who died in 1978. Shortly before her death, she turned over the formula and manufacturing rights to the Resperin Corporation, a Canadian company that has provided it to patients under a special agreement with Canadian health officials. Several reports state that the formula contains burdock, Indian rhubarb, sorrel, and slippery elm, but there may be additional ingredients. Essiac tea claimed to be Caisse's original formulation is also marketed in the United States. Several animal tests using samples of Essiac have shown no antitumor activity. Nor did a review of data on 86 patients performed by the Canadian federal health department during the early 1980s [14].


When I looked at this site in detail it shocked me just how many different scams there are. It would sadly make sense that unscrupulous and evil people would take advantage of such a large medically challenged and vulnerable subgroup within the general population.