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Joined: Feb 2005
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Yay, Bill! Glad to know you DO have a support group there. I am still having severe swallowing problems and I wish I could eat what you describe yourself eating. Even after the esophagus surgery I went through, I seem to be stuck with small mouthfuls of liquid only. Everything else I choke on eventually. I really hope I can learn to compensate somehow with more practice and get a few other things down and get off the PEG (after more than a year of nothing but soups to eat I am SO sick of soup!), so I have sympathy for struggling with eating but to me it seems like you have the ability to do what i wish I could do....Hang in there, hopefull you'll get more tatse back as time goes on.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Dear Bill.. I am so sorry you have had a rough time of it... but, what pleasure to see the "old " Bill re-emerge. I wondered where you had gone ...we really missed your lovely meals, and advice , on the Island!
Cheers
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
Joined: May 2002
Posts: 2,152
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Dear Bill,
Wow, What a turn around. Remember that lobster dinner you cooked for all the girls on the island. Well lobster was one of the first things I could really taste and enjoy(along with rare lamb chops) and corn on the cob. Invite some friends over and give it a try.

Good to see you back and sorry your taste buds are still on mutiny. Ice cold, vanilla, coffee and butter pecan Ensure Plus are tolerable and 350 calories. Dark Chocolate Boost was OK. I used these to supplement what I could eat and mainatin weight. Keep experimenting with tastes. You like to cook and eat too much to give up on this.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Aug 2005
Posts: 129
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Posts: 129
Hi Bill
I was just reading your post and wanted to add my 2 cents. I personally have not gone through the wretched cancer battle that you and many here have. My Mom's tongue cancer is what brought me here.

But I am a personal fitness trainer and nutrition consultant and have some knowledge in muscle mass and the very important impact it has on one's health. You are right in your concern with the loss of your muscle mass as well as your concern with adequate protein intake. Muscle loss is a natural aging process that occurs in healthy adults begining at the age of 25. In your case with your illness it is even more extreme. Walking will not help you with maintaining or increasing your muscle mass. You really need to begin a safe resistance training program. Weight training is the the only thing a person can do to maintain and or increase their muscle mass. It is especially important at we age. It can take as little as 20 minutes a day 2-3 days a week to receive some great benefits. In addittion the protein is also essential to help your body build vital muscle mass. There are so many variations of protein shakes-ready to drink and powders. Just keep experiementing until you find what you prefer. Don't hesistate to add your favorite items to the powder and blend it up. Berries, bannanas, yogurt, coffee, cream, vanilla, etc...the sky is the limit to get the flavor to where you want it. The general rule of thumb is 1/2 gram of protein per pound of weight. In your case you might want to increase it up to almost a full gram per pound of your weight.

By increasing your muscle mass you will really feel alot better. Your energy will increase, your mood may improve, you will have better joint health and decrease your risk for injury.

Good Luck in reclamiming your health!
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
Joined: Feb 2006
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I had a really ahrd time tolerating all of the common protein supplents like Ensure and Boost, etc...for some reason I found the Whey based ones to taste terribe and they make me feel gross. I like Soy based supplements much better. Especially Spiru-tein by nature's plus. It also has the added benefits of 100% vitamins, minerals, enzymes, fibers and diet-aids such as lecithin, choline, inositol and spirulina. Bee pollen is also added for increased energy and endurance. and it comes in 10 Great flavors...I like the vanilla the best. I lived off the stuff for the few months at the end of treatment where I had a liquid diet.

Give it a try....

dw

Joined: Jan 2006
Posts: 101
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Posts: 101
When I read your first post, my heart was hurting and I was a bit afraid for you... When I got to your second post I saw you rally!! Your description of the grass and your "poor hedge heads, made me smile. You are very inspiring and I thank you for your positive outlook. Dannyboy would be proud of you!
Jennie


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
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Bill,

I appreciate your posts and can definitely relate. I know what it is like not to be able to taste food. My taste is wierd, that it comes and goes. Have you tried accupuncture? That and aurricular therapy has really helped me. Keep being postive!

Joyce


Diagoned with SCC left lateral tongue 01/05: Partial left neck dissection, partial glossectomy. Lymph glands cleared. Reoccurence in June 05 on tongue base:radiation x33 plus chemo. Started treatment on my 35th birthday! On the road to recovery...
Joined: Aug 2005
Posts: 158
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(Paul Harvey voice on)
And nowwwwwwwwwwww, for the reeesttttt of the story!
(Paul Harvey voice off)

What's six weeks among friends? smile

When we left our story Bill had seemingly made an about face, without causing any serious injury to himself. The Navy bootcamp training apprently still resides somewhere in the depths of the gray matter that resides beneath his hair. You may recall, and if you do not you can read the post further on up, that I was off to my little sister's home that afternoon, with an ocean side horseback ride scheduled for the following morning.

I arrived around 4 PM to find little sis slapping fresh ground beef into patties to be sacraficed later over some Kingsford charcoal. Asking if I could help was a mistake in that she immediately put me in charge of making a huge bowl of salad, lettuce, tomatoes, green and red peppers, red onion, sliced cucumber and chopped celery. She also wanted sliced mushrooms in it but they were reserved on the side for anyone wishing to consume them. I do not eat toadstools. Frogs pee on them and then you get warts in your stomach!

Sis had already made potato salad, which was chilling in the refrigerator. Pickles, pickled onions and beets, as well as the customary chips and dogs completed our feast. I was pleased to see the dogs because that is one of the things I can taste.

However, I decided to live dangerously and tossed a large beef patty on the grill for myself. Cooked beef tends to be dry, and dry is not good for swallowing, but I have always consumed cheeseburgers from the grill at about medium-rare, still holding some of the natural juices. With a dash or two of salt, a splash or both mustard and ketchup I bit into it. No, other than the taste of the charred exterior from the charcoal I could not taste much. But I ate the whole damn thing, and only need an occasional sip of "liquid" refreshment to get it down.

It was, an absolutely fantastic dinner and I ate a bit of everthing there, well except for the toadstools, and I doubt it necessary to revisit the reason for that. Later on we built a fire out in the yard and sat around yacking and just plain enjoying the company of one another.

I was up at 4:30 the next morning and got the coffee going. While I was showering sis got up and prepared breakfast, just for the two of us, homefries, sausage patties, scrambled eggs and toast. We ate like two starving animals. Sis hit the shower and I cleaned up the table and kitchen.

We were out the door at about 5:45 and after a short drive arrived at the stables. Ten minutes later the horses were trailered and we were headed to the ocean, arriving at about 6:30 with but a faint hint of light appearing on the horizon.

We had been riding for near 20 minutes before the sun broke the plane of the horizon, on what was a completely cloudless morning. We needled each other about being challenged and not remembering to bring along a camera. Damn I love that girl. If she were not my sister, and already married, I would marry her in a heartbeat.

We returned to the trailer just before 11:00, loaded the horses and headed back to the stables. Both horses were given baths and brushed down before we headed back to the house for some much needed lunch. Lunch you say? HAHAHA!!!

My brother in law is Italian. The familiar essence of garlic permeated the air as we walked to the front door. We nibbled on antipasto for a bit which was followed by chicken cacciatore and shells with meat sauce. Oh, and garlic bread.

The three meals were very likely more food and calories than I had consumed in past several weeks combined. Who cares that I could not taste much of it? It did not matter. My stomach was not emitting strange noises, similar to those found in some science fiction movies.

There is one small piece of not so good news, and that is that I am still stuck in S Florida. However, I am taking a reprieve. I am flying up to MA on the 15th of next month for a couple of weeks, returning on Dec 2nd. I AM going to celebrate the coming holidays with my family.

I did manage to solve the problem with my medications I currently have anywhere from a six to nine month supply of each. smile It would not surprise me to learn some day that doc had to call several company reps the following day to get his sample supplies restocked.

I have kept myself busy around the house, cleaning, dusting, vacuuming, washing and waxing and doing laundry. I have also delighted in the melodic sounds that eminate from the grass and hedges several times more, as their heads are ripped off by the now rather dull blades of the mower and clippers.

My wife has scheduled a couple of appointments for me while I am up there. I need no reminders from the peanut gallery. I know it has been far too long since my last visit to see a doctor and dentist. Yes, she is back to work and loves her new job. The absolute best part of it though is that our new health coverage is through Pilgrim Health and Dana Farber is a part of the network!!!!

I am tired so I am going to put some Greenmusic on loop on the computer and head on off to my four-poster. I have REALLY gotten into ambient new age music. If any of you wish some suggestions for some awesome relaxing sounds let me know.

'Till next our paths do cross yet again, peace and health to all of you, accompanied by my most grateful and sincere thanks for being here for me. No, I am not about to disappear into the mists of the moors. You'll see my smiling face again, soon.

(Paul Harvey voice on)
And now you know the REST of the story.
(Paul Harvey voice off)

PS: I wonder if I will ever be able to make a short post..... laugh


No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac

Thank you for leaving your mark.
Joined: Apr 2005
Posts: 2,676
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Bill, I read your post, Loved it, and will send you some thoughts about it when I have caught up on sleep. laugh Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
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Posts: 2,219
Bill,

Several things.

1. Most of all, that's great news. You're eating (I'm getting hungry) and about the insurance.

2. Don't shorten your posts.

3. Love the sense of humor.

4. Try writing a book. You'd be great at it.

5. Hope you sell the house soon.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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