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Glenna M said:

Gaining weight
Hi Frank. Happy to hear you have finished the chemo.

Eating is definitely not as pleasurable as it was pre-cancer but you must keep trying and experimenting with different foods. I'm 4 months post treatment and my taste buds are slowly returning, still not as good as they used to be but at least now I can taste some foods. I still suffer from severe dry mouth so I keep a bottle of water with me at all times. Saliva production is near 0 but my doctors have already told me not to expect this to get any better because my salivary glands were "fried" from the radiation. I guess it's the price we must pay, it's definitely better than the alternative.

I have been able to maintain my weight but was unable to gain any until I started drinking the Ensure Plus again. I drink 2 or 3 bottles a day and have finally managed to gain 3 pounds. LOL - this is the first time in my life that I have had a hard time gaining weight. I'm not crazy about the taste of the Ensure so I just think of it as a medicine I must take daily. I do not eat sweets or junk food, even though they would probably help me gain weight, I prefer to eat healthy, nutritional foods which will benefit me. The Ensure is an additional 1050 calories per day and is quite nutritional.

Hope everything improves for you and you are soon on your way to enjoying eating again.

Stay strong and keep smiling,
Glenna

HAWVET''s Reply
Thank you for your interest in my life style. I have replied to Hondo and have another request in my PM file. Since there is a couple more interested, I have decided to write a short narration of things I can remember. It was in January 1998 when my NPC was discovered.

Please give me a few days. I will not publish it in this forum. I will PM it to you. I had printed a brief sketch a while back.

For your information, I do not know why my NPC did not return. After you read my story, you can make your own determination. Please do not ask me for recommendations, since sometimes it does not turn out well and people get upset or distrustful. If you ask a question, I will be happy to respond to it.

I believe the best bet is for individuals evaluate what others did and decide for themselves the approach they want to take. Let me give you an example on dry mouth conditions. As the years have progressed, I think mine is worse than before. Like may, we carry a bottle of water, not to drink but to keep the mouth moist. I tried that little Oasis mouth spray (about 4 inches tall). I did not like the taste. One day, I emptied the contents, washed it out and filled it with water. Most of the time, I now leave my bottle of water in the car and carry that spray when at the stores or at the mall.

Kent Cass (reply to your question): Salads may or may not have been a part of my recovery process. Do you remember the old saying "An apple a day keeps the doctor away". Immediately after treatment, I was doing a lot of reading on vegetables, herbs etc. I cannot remember why, but I decided besides herbs, to make juice out of two items. I will include this as part of my story, but I drank the juice of one apple and one carrot every day. In recent years, I probably do it about 15 days a month.

So as not to stray away from Ratface's thread, let me reply on my method of eating pancakes. I place the butter on top before slicing it. I only slice in pieces about a fourth at a time. I then place my syrup on the pieces. It is not enough for my extreme dry mouth so I pour milk and soak it up to the degree where it is moist enough for my chewing and swallowing.

I do not visit this forum as often so while I am on and to...

Glenna M: I recently started Ensure because of my weight problem. I too, do not like the taste. In order to change it, the therapist recommended adding things like chocolate milk, ice cream or coffee. I still do not like it, but to me, it is more tolerable.

Aloha,

Johnny

SASH

I told my wife if I ever get over this I will be one fat guy eating everything I can that was before my daughter became a health nut on me and watches everything I eat now. I love her for what she does but wish she would ease up just a little on the old man.

fsdman said:

Saliva
Glenna,
Lack of saliva drove me nuts .My Dr told me about a study called "accupuncture for radiation induced xerostomia".I am not a big alternate beleiver but Anthem would pay 100% for 12 treatments so I found an accupunturist who agreed to follow the specific needle location protocol used in the study..After 3-4 sessions I actually noticed an improvement .The saliva improved to the point where it allowed me to eat far more things without drowning them.The accupunturist ,at my request,also worked on my tongue which always burned. It also helped that alot.Make sure the accupunturist doesnt just stick needles where he wants.Ask himto also treat the tongue and taste buds.It worked for me and greatly improved my quality of life.I still keep my water close but its great to have a little(30-50%)saliva again.Good luck

Thank You
That is very excellent news, fsdman. Wish I knew of one in my area, but just may explore the possibilty. Again- thank you.

kcass

fsdman said:

Saliva
Glenna,
Lack of saliva drove me nuts .My Dr told me about a study called "accupuncture for radiation induced xerostomia".I am not a big alternate beleiver but Anthem would pay 100% for 12 treatments so I found an accupunturist who agreed to follow the specific needle location protocol used in the study..After 3-4 sessions I actually noticed an improvement .The saliva improved to the point where it allowed me to eat far more things without drowning them.The accupunturist ,at my request,also worked on my tongue which always burned. It also helped that alot.Make sure the accupunturist doesnt just stick needles where he wants.Ask himto also treat the tongue and taste buds.It worked for me and greatly improved my quality of life.I still keep my water close but its great to have a little(30-50%)saliva again.Good luck

Hi fsdman
If you don’t mind and I hope it is ok to do here on the board it to give us the Name and phone number of your Acupuncturist doc. May be he can make recommendations to each of us of who in out local area can do this type of treatment.

I find that there are two types of Acupuncturist doc one is pain management and the other is disease management. Correct me if I am wrong but I think the disease management Acupuncture is what we need.

Thanks again for your post, like Kent and Glenna I am glad to hear this has worked for you.

Take Care my friend

Hondo said:

Hi fsdman
If you don’t mind and I hope it is ok to do here on the board it to give us the Name and phone number of your Acupuncturist doc. May be he can make recommendations to each of us of who in out local area can do this type of treatment.

I find that there are two types of Acupuncturist doc one is pain management and the other is disease management. Correct me if I am wrong but I think the disease management Acupuncture is what we need.

Thanks again for your post, like Kent and Glenna I am glad to hear this has worked for you.

Take Care my friend

Hondo,
I posted the web
Hondo,
I posted the web site for the report. I got a list of covered accupunturists from AnthemBC .I would suggest you download the study and send it to whoever you want to use to be sure they follow the protocol.Many accupunturists never heard of xerostomia and want to just stick you with needles.Good luck.

fsdman said:

Hondo,
I posted the web
Hondo,
I posted the web site for the report. I got a list of covered accupunturists from AnthemBC .I would suggest you download the study and send it to whoever you want to use to be sure they follow the protocol.Many accupunturists never heard of xerostomia and want to just stick you with needles.Good luck.

fsdman
Thank you so very much

Hondo said:

Mick

Are you doing pain or disease management acupuncture, I am told that there is a big difference between the two. I found a guy here that does disease management acupuncture my first visit was very weird, I expected it to be different but not to blow my mind.

When I found out the guy smokes a lot of many Jane I decided not to go back for fear he would get busted with me in the place with a needle stuck in me.

Is this normal?

TCM
Hi Hondo. Traditional Chinese Medicine (TCM) and acupuncture typically does not treat specific symptoms but looks to treat what is found systemically. For example I am being treated for 'heat'. Some people are treated for a yin or yang deficiency (most people have yang deficiencies or so says Joe Park, my practitioner).

In addition to being treated for heat Joe is doing what he can to restore 'balance' in my body. He doesn't talk much so I'll try and get a more complete answer when I see him on Wednesday. He says all he's doing will boost my immune system and help deal with pain, but it's all part of the systemic treatment of reducing heat and restoring balance.

I know that will not make sense entirely, but I am stronger now that I ever have been and I think it must have something to do with the approach I'm taking, uniting West and East. I am hoping that by continuing this approach, I will get a cumulative effect that will make recovery faster and long term survival more likely.

My surgeon said, once he diagnosed me, that my life would change forever. At the time I thought that was a bad thing. Right now I have strength and hope, so that is a positive change from where I was, even before diagnosis. My marriage has been saved. My friends are numerous and I am happy. If cancer caused that then maybe I need to be more grateful. That sounds strange, but perhaps it is truer than I care to admit.

Best,

Mick