This is my first post here.My name is Cathy and I live just north of Toronto. I'm 48, a non-smoker and home from the hospital just 7 days after my surgery. I had a partial glossectomy with the forearm flap and neck dissection. I'm talking pretty well ie. my sister and boyfriend can understand most of what I'm saying. The frustrating part (as I'm sure you all ybderstand too well) is the eating. Soup, yogurt and pudding starts to get boring after awhile but I keep telling myself to be patient.

I'd like to know if there's anyone out there from the Toronto area. And I'd love to here from any of you on the eating/slurping thing. How long did it take for all the numbness and swelling to go away?

Any replies are greatly appreciated!!

Hi Cathy,
I never had surgery so I can't answer your questions but I wanted to welcome you to the site.

I can tell you though that because of the radiation, I was on a liquid diet for many months and it was miserable. I'm eating regular food now including spicey stuff and carbonated beverages. Be patient it'll get better.

Hi Cathy, and welcome. I had the neck dissection and can tell you that there will probably always be a degree of numbness on that side, although two years out, I have regained enough feeling so that I don't notice anymore. I do remember the first time I felt an itch, scratched it, and felt it. This will happen for you too, down the road. As far as the swelling, ask your nurse to show you lateral massage. This is a simple thing done with just the tips of your fingers, very gently, and for me, made an incredible difference and reduced the swelling almost magically. You want to be sure you are doing it correctly, however.

About food, do not forget gravy (grin).

Right now the best thing you can do is be patient. Not easy, but in this case time does heal a lot.

Joanna

Welcome Cathy,

If you can eat soft foods this early you are doing very well. I am 8 months out from right tonsil surgery with a pech muscle flap. I had a feeding (PEG) tube for 7 months. I am eating all my food orally now. I had the tube out about 1 month ago. Remember It gets better!!! You may not be able to tell right away as you will measure your progress in weeks not days. Again I welcome you to a forum and it's members who will help you with as much information as you can ask for.

Dan

Hi Cathy, Glad to hear you're on semi-solid foods already. My docs were the same way, wanted me on semi-solid foods at least before I left the hospital. No peg tube.

Swelling will take a while, I just celebrated a one year anniversary of sorts of one of my neck dissections, and the swelling still comes and goes a little. Numbness will probably be around for a long time, eventually you get used to it.

Keep trying with the eating, part of the problem is just getting used to how to manipulate food with the post surgery tongue. Just let your speach and accent adapt. I sounded a lot like Homer Simpson for a few weeks.

Good luck
Bob

Hi again -thanks for all your responses and encouragement.

I had my first post surgery visit this morning and the doctor says everything looks great. He told me he got all the cancer but it had spread to 4 lymph nodes. All the lymph nodes were removed during surgery. The protocol is if it spreads to one they don't radiate but more than one they do. I have an appointment with the radiologost on 2 weeks. The speech pathologist was quite impressed at how well I could talk and move mt tongue -- both she and my surgeon are urging me to try harder with the eating. I was pretty scrawny before the operation but I've since lost a few more pounds. Have you all noticed that most foods today are low cal and fat free? My nutritionist suggested Hagen Daas (sp?) ice cream.

Hi Cathy, so happy your surgery went well. Your story sounds similar to mine. I had the partial glossectomy, forearm flap and neck dissection in May 2002. The c had spread to two of my lymph nodes, soooo I then had 35 treatments of radiation. God Bless You, it is not an easy road but surely worth it. Carol

Hi Cathyl!

I am squeeling with delight at your good news! I didn't have any surgery but I know how tough the radiation and chemo is. I hope they are doing both. I lost 70 pounds from August to February and have finally but about 15-18 back on in March. It only took about 4000 calories a day for weeks but once it started coming back, life has changed immensely for me.

Good luck on all of your treatments and recovery process! There are lots of resources if you need them. The Procrit people have a neat web service that allows you to sign up when you start radiation and they send you emails of what to expect in terms of side effects, etc., as you progress through your treatment.

Ed

Cathyl,

I found a link I mentioned in my last post:

http://www.procrit.com/oncology/diagnosed/registration.jsp

It seem like a pretty good thing if you are starting chemo/radiation. It is geared towards Procrit and is somewhat of a marketing ploy but if you gain knowledge in treating some of the side effects, it is useful.

Ed

Thanks for the link. I have a question --- because i'm having troubgle swallowing thin liquids i'm not drinking much water at all....and i'm having the dreaded thick mucous problem. Any suggestions are greatly appreciated!! :p

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.

Sabrina - thanks for the tips. Can you send me your frappe recipes?

All sent. In case anyone else wants them:

One (750 calories):
1 cup milk or soy milk
1/2 cup ice cream or sherbert
1 scoop protein powder (Spiru-tein or other, but note Ed's comment on Spirtu-tein))
1 Benecalorie (this is 330 calories alone, but note Karen's comments on weight)
2 TBSP Canola Oil (240 calories alone)

Two (500 cal):
Ensure Plus
1/2 cup ice cream

Three (obtained from some site somewhere, 1300 calories):
2 cups ice cream
1 cup whole milk
1/2 cup 1/2 and 1/2
1 pkg instant breakfast
1 tablespoons malted Milk
2 tablespoons Ovaltine

I've already experimented with the first one. IE, mixing Ensure, Support, Boost, skim milk, etc. She just gave me that as a base, so it's obviously flexible.

Sabrina

Gary,

I have serious doubts whether essiac tea is really a cancer cure. However, I believe some of the ingredients are very good for the body in general. I'm sure even suggesting the medicinal properties of herbs will stir a controversy but some will agree with even the beneficial merits of garlic.

Burdock Root is one of the foremost detoxifying herbs in both western and Chinese herbal medicine. It is used to treat conditions caused by an overload of toxins such as throat and other infections, boils, abscesses, eczema and other skin disorders. A diuretic, it is used for gout and for arthritic swelling and deposits within the joints. Burdock root is also used as a blood cleanser and to help rid the body of waste products and for helping rid the body of heavy metals. The Japanese believe eating long roots promotes long life and burdock is exactly that, a long root.

Slippery Elm is used extensively for inflammation of the lungs, bowels, stomach, heart, diseases of the female organs, kidney and bladder. It apparently soothes ulcerated or cancerous stomachs and heals all mucus membranes. It is also an immune system booster.

Mucilage has a smooth acting cleansing action. The cleansing action is due to the sticky substance found in the gum resins of the plant, which helps dissolve mucus that has been deposited in the tissues of your body organs, lymph glands and nerve channels.

Slippery Elm has a lubricating action that protects and softens all the membrane linings in the body, especially those membranes damaged by chemotherapy and other cancer treatments. Membranes damaged and inflamed from other illnesses might also be healed or helped by Slippery Elm.

As part of the cleansing action, the gum resins in Slippery Elm bark gather up dissolved toxic waste in your body, including your bowels and helps discharge them accordingly.

Sheep Sorrel is high in vitamins A and B-complex, C, D, E and K. It is very rich in minerals including calcium, iron, magnesium, silicon, sulfur chlorine and trace amounts of iodine and zinc.

Beneficial elements in sheep sorrel are the carotenoids and chlorophyll. Chlorophyll has been shown in lab studies to increase resistance to x-rays, purify the liver, stimulate the regeneration of fresh tissue, relieve pancreas swelling, cleanse the walls of blood vessels and strengthen the cell walls. Vitamin A strengthens the immune system by increasing the production of white blood cells and T-Cells. It is the white blood cells and the T-Cells that are known to destroy cancerous cells.

Turkey rhubard aids and helps cleanse the digestive canals and the entire digestive tract, improves digestion and appetite. It stimulates colon action and glandular secretions, alleviates bowel pain, clears colon blockage, duodenum ulcers and is an excellent stomach tonic. Turkey rhubarb (Rheum palmatum) should not be confused with domestic rhubarb, the variety commonly used to make rhubarb pies

Echinacea is one of the most popular herbal products on the market. It has been used for years in the fight against ailments that increase the stress on the immune system; upper respiratory conditions such as colds, sore throat, enlarged lymph glands (tonsillitis), coughs, flu, and ear infections. Studies have found this plant to be highly anti-bacterial and anti-viral, probably due to its stimulating effect on the human immune system. The ability to combat infections has given Echinacea a reputation for relieving fevers.

Echinacea (purple coneflower). The subject of more than 350 scientific studies, most conducted in Europe, Echinacea seems to stimulate the immune system nonspecifically rather than against specific organisms. In laboratory tests, Echinacea increased the number of immune system cells and developing cells in bone marrow and lymphatic tissue, and it seemed to speed their development into immunocompetent cells (cells that can react to pathogens). It speeds their release into circulation, so more are present in blood and lymph, ~and increases their phagocytosis rate--the rate at which they can digest foreign bodies. Echinacea also inhibits the enzyme hyaluronidase, which bacteria use to enter tissues and cause infection. This inhibition helps wounds to heal by stimulating new tissue formation.

Echinacea exhibits interferon like antiviral activity documented through extensive experiments in Germany. For example, in a double-blind, placebo-controlled study of 180 volunteers, Echinacea's therapeutic effectiveness for treating flu-like symptoms was "good to very good" (Braunig et al., 1992). Another study showed that orally administered Echinacea extracts significantly enhanced phagocytosis in mice (Bauer et al., 1988). Water-soluble Echinacea components strongly activated macrophages (Stimpel et al., 1984), enhanced immune system cell motility, and increased these cells' ability to kill bacteria. Other immune system cells were stimulated to secrete the disease-fighting tumor necrosis factor and interleukins 1 and 6 (Roesler et al., 1991). Another study showed that Echinacea polysaccharides increased the number of immunocompetent cells in the spleen and bone marrow and the migration of those cells into the circulatory system. The authors said these effects resulted in excellent protection of mice against consequences of lethal listeria and ~candida infections (Coeugniet and Elek, 1987).
Echinacea's effects are not yet fully understood, but it is known that a number of constituents simulate the immune system to counter both bacterial and viral infections. The polysaccharides have an antihaluronidase action, inhibiting the ability of viruses to enter and take over cells, while the alkamides are antibacterial and antifungal.

We eat vitamins in many forms and vegetal sources of vitamins and minerals are the basis of our nutritional pyramid which promotes eating fruits and vegetables to the tune of five servings per day. The key is to know what is in what we ingest and to avoid overindulgence.

Ed

There is much we know about these herbals and much that we do not. The thing that bothers me the most is that there is no regulation of them by anyone. Echinacea from one manufacturer may not be anything like the same-labeled product from another for instance. There are also no controls that are enforceable to ensure that they are free of contaminants, as the manufacturers are unregulated. In all this there is also a ton of misinformation from a variety of sources, because there have been few controlled studies of herbals. As in all things, make sure you have the best possible information from the best possible sources. Please read new article we are putting up tomorrow on dangerous herbals from the Consumers Union and the FDA.

Hello, I'm Eric.
I am new to this but not for along. I am going to be having surgury on 5/4. Brain has been a great help to m today. I can see from reading your messages this site will be of grat value.

I'm not sure if this is were I introduce myself. I think I'll wait a bit to tell you more. I want to see if this is the place to intro myself.
Eric

Brian,

You make an excellent point. When we use the same meds manufactured in different countries to save money in our economic adversity, we raise some of the same issues, sans the contaminants (I hope.) When it comes to vitamins and minerals, including trace minerals, we have had to rely on the Maker above to regulate our doses by this magnificent machine we live in. The government attempts to regulate this with all of their nutrion guidelines and food pyramids, only to discover years or decades later that they, too, were wrong.

Heck, even the U.S. Navy provided guidelines for military scuba divers that the entire world adopted and then they suddenly retracted them after about 50 years and said they may have been dangerous and life-threatening. Go figure.

Ed

Hi Ed,
They may be good for some people but could have serious consequences for people with impaired livers (like me with Hep C). It can also change the effectiveness of chemotherapy treatment.

I work as an FDA consultant and I have to agree with Brian than this food supplement loophole has got to be stopped. Why companies are allowed to promote medical benefit of unproven and potentially dangerous herbs and other food supplements is one of the dark sides of the regulatory business and congressional and political meddling with the FDA. Using some logic here - if an herb really DID have curative powers, why wouldn't a company WANT to do the clinical trials to prove it - they would make billions! The deceptive, testimonial style of marketing is the tip off.

Let's assume the most positive, that something does have actual clinical benefits. Without regulation of the manufacturers of that herb into tablet form we cannot control if what they say is in the tablet, (actual composition, contaminants, same form of it that has be set to some common standard, etc.) actually is what is in it. We really don't know what we're taking. I'm suggesting regulation of the industry for these issues. Claims of effectiveness of a given product can only be proven by double blind testing, and that is the second issue. In an unregulated industry you can pretty much make any claim you like, such as

I just had another wake up call about this whole subject. I was meeting with a client this afternoon and he informed me that his brother-in-law just died from oral cancer. He was a PhD and opted to explore alternative medicine to treat his cancer. By the time he sought conventional medical solutions it was too far advanced to be treated.

I sure hope you aren't implying that I am suggesting to anyone that they should stop conventional treatment and rush out to the nearest herbologist and cure their cancer. If it were this easy, there would be no cancer left in the world. Exploring alternative medicine for even trained individuals is a sure sign of lack of intelligence, even for a PhD. Taking Oregamax (wild oregano) to ease a runny nose from allergies or hay fever is a far cry from dumping everything available for something unknow, unquantifiable and undocumented. Our bodies ability to ingest raw or cooked vegetables and extract the needed nutrients is not fully understood by man and we may never know exactly how it is done on a cellular level other than to surmise, speculate, develop a theory and test for the desired results.

We have released many drugs after even decades of thorough testing to find out future generations are born deformed physically and/or mentally. We have created many drugs that have damaged livers and hearts but solve other biological issues. I can't help but think that many of the studies by pharma companies have been somewhat stacked for success in view of the enormous profit potential that drives them as well as the quacks. We can't develop a false sense of security because the FDA has rubber stamped it. How many people on this board received the bad batches of Duragesic patches that were recalled. The dosages were totally uncontrolled and caused a roller coaster ride from no medication to the entire patch unloading at once. Lucky me, I was asking the doctor and pharmacist about it back in December only to find out several batches were released in error. I keep getting legal forms to fill out now to allow them to dig into all my medical information from now on, just in case.

There are no sure cures for many illnesses and the herbal or vitamin path is certainly a potential to improve quality of life.

Ed

Don't take all the caveats personally. We have had people on the board that have argued for faith healing, (see a couple of these in the permanent FAQ's), herbal remedies in lieu of conventional treatment, products that appear on the Quackwatch list from doctors and pseudo-doctors out to make a buck, and all that before.... perhaps we are just a little gun shy. For sure medicine is part science and part art, making it an imperfect profession. Even an FDA 10 year clinical trial process will not yield a 100% conclusive result or absolute guarantee of no problems with a product. I think that we can all agree that in this life, except that it is finite, there are no absolutes. I was merely suggesting that it is better than the "no review at all" herbal market.