Yes, David is *usually* right...some things come sooner for others...but, that first year is usually a recovery year.

Dan finished treatment in August and I remember he had his first big, juicy, expensive steak in April and enjoyed every bite.

For many months post treatment, the bulk of his calories came from liquid supplements and the remainder from trying different foods (some successful, some not so). His saliva and taste buds recovered much faster than his lingering fatigue...for others, it is the other way around. For many people, it's all about finding a new normal.

I agree with David, even if it's a liquid supplement, try to get your calories and fluids in daily. It's important to your healing process.

3000 cals would put me into hybernation. My nutritionist said I needed about 1700-1800 to sustain myself. I think I'm hovering a little lower than that, but I've been trying to drink a can of whatever with every meal, so at least I'm supplementing. But yes, you're right. I need to eat more.

There was no way I couuld keep up with the calories required so I lost over 60 lbs. Not an ideal situation and it caused a lot of consternation with my RO, in particular. I eventually put most of the weight back on and it was no big deal. I did refuse to get a PEG however. Many health care professional feel that nutrition pays a major role in the healing process. 3,000 calories would be fine for a person doing normal activities but someone convalescing, around 2,000 calories is more realistic and that's for a male. Females around 1800.

Here is a link to a calorie calculator http://www.exrx.net/Calculators/CalRequire.html

I think we need more calories to fuel our bodies war battling not only the treatment but the cancer itself. Let them produce a calorie calculator for OC patients!!

I am completely on canned Osmolite and crushing all pills because I'm aspirating everything (that's bad!)due to radiation damage. So they put me on nothing by mouth - everything by feeding tube. I'm not gaining much weight and it varies so much! 97lbs. one day and 93 lbs the next day. I weigh at the same time every day. I finished radiation in November 08.
I cannot stick my tongue out of my mouth - it will go only as far as the edge of my bottom teeth. They have given me tongue exercises to do to improve my swallow function which was damaged by radiation (see paragraph 1) and causes the aspiration. I have seen no improvement but I don't do many of the exercises because it's so painful. My tongue is also swollen on the cancer side. I've had numerous PET scans and it appears the cancer is gone. but I'm having another Monday.
I also have trissmus - mouth is closing up. I cannot get a toothbrush in on the left any more. Have a dinasplint but the salesgal said to quit using it since it's so painful. Can anyone relate to any of this? Is there any hope?

Nancy

Yes there is hope. first thing is to get better pain management. I would never have been able to do either my tongue exercises or jaw exercises without the fentanyl patches. You can always wean off the opiates but you need to do those exercises now if you are going to get better. Yes, I know firsthand how frustrating it is to crush all the pills and just be using the PEG as I am still doing that also. But have faith in the exercises although if you don't do them, they can not work
So get some decent pain relief like 50mcg fentanyl patches to start off and some nice liquid Roxicet (percocet) that just goes right into the PEG. you should not be feeling this much pain and it will prevent you from proper healing. You can time the exercises for after you take the pain medication for best effect
Good luck and hang in there
charm

Charm: I'm in treatment at Johns Hopkins. You? I plan to start going for therapy to Fairfax to supplement my visits to JH. I don't know some of the terms in your signature: glossectomy, Erbitux, vigilon. Could you explain? My pain is due to the jaw pain which is due to the trismus. Is that what your problem is? I have plenty of the Fentanyl patches and drugs but unless I've just taken a pill they don't give much relief for the pain in my jaw. I don't mind the crushing pills or the peg.

Nancy, I am so sorry you are having such a difficult time with the after effects. Thos can be long lasting and very brutal. Ive had trismus and still battle with that. At my worst, I was able to only use about 4 tongue depressors to stretch my mouth open.

Stretch your mouth open as wide as possible and hold it about 10 seconds. Do this several times in a row and repeat several times per day. If you do not work hard on the stretching your mouth will only get worse.

Use pain meds to get your pain under control. It will also help when doing your stetching exercises. Ask your doc about more exercises you can do. Or try a speech thrapist or even a physical therapist. I used a wonderful physical therapist who helped me so much with my trismus.

Congrats on the clear PET scnas. Thats very very encouraging news. It takes a long time for most of us to bounce back from these awful treatments. Be patient, it can be done.

Best of luck with everything.

Christine, Thanks so much for your thoughts. I doubt that I even could get 4 tongue depressors in! It's jaw pain at the joint. The dynasplint gal gave me a card and at the beginning, a few weeks ago, I could reach 20 cm. Now I can't even get the card in my mouth! My radition Dr. had the Dynaplint gal get me this apparatus that is used for stretching your mouth but she told me to quit using it because of the pain.
I have plenty of pain medication, including patches. However, anytime I try to open my mouth to do any of the exercises that they've taught me (this through the speech therapy dept at Johns Hopkins), the pain is extreme. Perhaps what you've suggested (just opening wide several times a day) would work better for me. The real problem with the pain meds is that I live alone, so to be able to drive I really have to hold back on the pain meds. When I know I don't have to go anywhere that day, I can load up! lol. My daughter is due any day now (she's a week overdue with my first granddaughter) and lives about an hour away off an Interstate! So I've been holding off on the pain meds even more!
They have me working with the speech therapists because of the aspirating! My swallowing function is all screwed up and so we're tring to stretch my tongue, which doesn't even go out of my mouth any more.
Looks like we have been dealing with this cancer about the same length of time. I was a stage 4 by the time they figured out what was wrong and that was Spring to early summer 08. no, I guess you've had a year longer than me.
It helps so very much to hear from someone who has a clue about what I'm dealing with. I hope we can keep in touch on here. Have I posted this on the right forum? There don't seem to be many people on this section. I have somewhat of a problem figuring out this site.
Did you have to have your teeth out?
I have my 3rd PET tomorrow. The last 2 have shown no cancer but the Dr. says that usually with this much pain there is cancer present. Thank you again so very much. Wish me luck! Nancy

Nancy

One suggestion for using this forum is that you open your own thread. By that I mean you click on the "new Topic" button at the top left of the screen. Otherwise you are just in the middle of a thread started by others and dealing with other issues. Better chance of a more focused response. You don't have to bundle all your questions together. There is no limit on how many new topics you can open.
I'm glad Christine has given you comfort and good advice.
finally, as to your questions: I decided John Hopkins was too far to drive when I could go to Georgetown University Lombardi Cancer Center. You will see that this forum is very big on going to a Comprehensive Cancer Center -CCC.
Glossectomy is just a fancy term for cutting out that part of my tongue where the cancer came back. It's complications from that surgery that prevent me from swallowing. Erbitux is the "martha stewart" drug - a chemotherapy that is less harmful to normal cells and kidneys and hearing than the platinum based chemo drugs but it can have bad side effects on skin.(as happened to me) vigilon is a hydrogel dressing for burns that I needed for my first round of radiation and Erbitux due to horrendous burning on my throat with open sores and peeling skin. I am lucky I have a caregiver who drove me to my radiation/chemo when I was too sick or too doped up. Last piece of advice, get a recommendation for a prothodontist - a specialized dentist. My CCC recommended one who specializes in oral cancer patients. I am sure John Hopkins has some recommendations as there can be lots of reasons (and treatments) for jaw pain. I just worked through mine even though all the advice is "stop if you have Pain". If I had stopped just because it hurt, I never would have gotten better on opening my mouth. Everything about my treatment and post TX exercises was and is painful so I don't know why they say that.
Good luck
charm