for all sorts of cancer stuff going on in both research and treatment....a cancer doctor was on "city club" the other night on the radio explaining about it...so don't know where you are but I would look into whats available at OHS also you can get on line and compare research/clinic trials/treatments from other countries...(like france) that are required to publish science research online because their countries have socialized health care....you can find this research in english.....so just go on line country to country....you never know if someone is doing something different that might help, best of luck to you positive love and light....the less stress and blame you put on yourself the more you allow your body to heal...don't let the bureaucracy of it get to you and allow others to do things for you....really remove yourself from the negative stuff of busy everyday life and focus on the beauty and enjoying the moment....life is not for sissies....focus on having a good process as you can possibly have and be an optimist....look for cancer support groups locally or online...I'm sure there are both....so you don't feel alone... Cheers, Maggie....let us all know how it's going....feel free to complain...

I am being treated by VA, with the help of the Markey Cancer Center. They are very experienced dealing with my type of cancer.

The financial side is no bother. It will be free.

My wife went through radiation therapy, so she will be a big help. It wasn't cancer, but she knows how to navigate the usual BS.

cheers, Maggie

who have been, and still are, in your shoes.

I am supposed to work the polls in mid May. I hope I can do it.

By now you have talked to the docs and asked them what outcomes are.
But still...hearing the word does tend to make your heart leap and give ya the cold clammies for a bit.

Are you in a legal marijuana environment?

I've observed and felt the caring and genuine nurturing that goes on here.

I wish you all the best as you embark on this (often) frightening journey.

Having said that, Welcome to the group. I'm sorry you are now a card carrying member.

aA
kesha

ask the doctors questions even when you can barely speak ask the guestions you need answered .

Get a dehumidifyer ,your throat will be trashed and partched but I swear it gets better , your taste buds will return and your saliva will too but you are going to have to drink lots of water for ever which means you will have to pee alot which is boring but beats dying .
What kept me alive was a cheesy portable c.d. player and some real head phones , comfortable ones .I listened to classical music because it goes well with the pain drugs that wipe you out .The hardest thing to do is not feel bad about feeling bad ,give yourself a break especially in recovery .Your mind will go chemo brain on you ,memory loss etc.... but you'll get it back .
tell the docs how you actually feel instead of stroking their egos , they a specialistics who lack bed side manner because of modern consumer medicine practices .
Join a cancer group because you will feel very alone in this and the cancer guilt thing needs talking about .Don't get scanziety because you get used to being poked and put thru absurd sci fi machines , last of all you might just say cancer was the best thing that ever happened to me because you realize we live till we die which sounds really dopey but its true .
H

The remainder of my glands, the left parotid, under the tongue and the submandibular barely function.

The reason I'm telling you this is because I have a question - did your doctor do anything special to protect your glands?

My tumor was also next to my right side parotid. Not on it or in it, just next to it.

My surgeon did what he could to relocate for drainage/excretion (parotid duct), and I could still produce saliva after surgery and prior to radiation.

After radiation, very little.

But if your doctor knew something that could help alfredo, then that would be great!

I know everyone is different, but every little bit helps.

Makes a huge difference - having those nodes and not having them.

Ask your doctor anything and everything that comes to mind. I know there are pills to help protect the thyroid, but after weighing it all with my doctor, I opted against them.

My doctor sort of laughed when I asked about drugs to help protect my thyroid. He saw the look on my face and answered seriously.

He said nothing really protected it. I'd either have problems or I wouldn't. Problems with the thyroid affect roughly a third of people who receive radiation treatment to the neck region. I do remember that number. But truly, other people might have had different results.

My doctor did say he would prescribe them if I really wanted to take them. The decision was mine.

My radiation treatment was some of the best and provided greater control of radiation hitting the areas it needed to hit. They explained the machine and the process to me fully. When treatment changed, to different areas, I got another explanation. When they changed to protons, I got another explanation. My cancer doctors were named in the Top 10 of cancer centers in the country, so I feel good about them.

Still, though, I'm getting my thyroid tested next week. Blood test can show if my thyroid is under-active.

I chose the Markey Cancer Center because it is good, and because it works with the VA.

There are several drugs for thyroid hormone replacement for after treatment, if the need arises.

I suffered Crohn's, but now I am clear of that. I will beat Cancer too.

My dad died of cancer because he waited too long to get help. I am not my father.

Do you mean a dehuimidifier, or a humidifier? The first takes moisture out of the air, the second injects it.

not familiar with your type of cancer and each type of cancer has something foreign to others that have the 'big C.'

This is a great group, but I would encourage you or a loved one to seek out specific groups and also second opinions, ask questions. Stay informed without becoming crazy. I see below you have a positive attitude and that counts!

I have six family members on my wife's side and one on my side of the family that are either doctors or nurses. So far they say I am making the right choices.

I know it will become real when they put the feeding tube in and nuke my neck.

good luck with the scan tomorrow!!!

Step by step

hope it was not too bad, but mostly wish for the best results possible.

That should help keep my sense of humor intact.

think it has 6 'anti' somethings Including anxiety and nausea.

As the first transplant doc said to my husband, a few days after being locked into a room for a month +, we have many drugs to get you through this period, use whatever you need to get through!

Just get past this time, use what it takes ... and that includes asking others to do for you or a loved one. Do not be afraid to ask, I think people are hesitate and few are adept at anticipating needs.

look at numbers to see if you are in the 'range' and fail to look at the trend, my husband has a blood cancer (MDS that led to AML and has undergone two bone marrow transplants) so I am all about trends in labs. I realize others are in a different situation and have other tests which I do not understand.

Our daughter is an internal med doc and I know she studied very hard and cannot even begin to tell you that I could not have memorized all those binders that were under her bed! But sometimes we just need to look at OUR picture. She is not going to micro manage her Dad's treatment, she is not an oncologist, not too mention a transplant doctor, and they have such different standards as we have learned over time. I cannot tell you how many times I have asked for another lab test to be included which led to a change in medication.

Stay involved and Question, but not so much as to get bogged down in every detail, BUT let someone else do that for you. Remain determined and keep that sense of humor, that is your job.

We tested different liquid meals. They suck, but it's temporary.

so my Valentine's card stated

It is temporary, that is the spirit!

Some of us are temporary members, some are permanent.

I don't have melanoma, so I don't have specific advice. I did know someone without salivary glands and they just kept a bottle of water with them at all times.

You are in the right place - you can post anytime, many members will let you PM them (ask first) but I'll at least say you can PM me, and if you want a phone number you can ask for that.

Also, do you have a spouse/significant other or a family member that would have questions? This forum is not restricted to the patients themselves. Everybody is involved.

Best of luck with the PET scan. I've had at least 10 of those, so if you have any questions, I could at least answer those - what to expect, how the process is, etc. Main thing is they inject you with a radioactive marker and you have to be quiet for about 45 minutes in a chair and let it circulate before the scan starts. They're much quicker and easier than MRIs. You might want to bring a music CD with you. Not all of them can pipe music into the scanner, but many can, and if it helps you, bring one and ask. If you're diabetic, your sugars need to be reasonable (<250), but that's about it. They don't want you to work your brain too much while you're resting - preferably no crosswords or internet or whatever. The main reason is they measure the difference in sugar uptakes, and excessive brain activity changes that.

I do have bad jokes. They're not cancer related, though.

- Tab

On edit: Can't help myself. Worst joke I can think of...

Q: Which came first, the chicken or the egg?
Answer: The chicken, because the chicken had to get laid before the egg did.

Let that serve you right for asking about bad jokes.

If I was going in tomorrow, I'd have soft pants, a t-shirt, and I'd leave my glasses and wallet and phone on the chair or something. I don't recall ever having to put on a gown or anything.

The hospital I have has the most excellent oatmeal raisin cookies.

It's not a scary thing. In fact, I prefer it over an MRI (they tell you different things anyway). I just try to chill and relax, do the crosswords or listen to music while I was waiting (although on my last visit they wanted me to cut it out and just not engage in any mental stimulation). But it's over relatively quickly.

Main thing is you have to stay away from pregnant women and babies for the next 24 hours. Wasn't an issue for me, but may or may not be for you. That's it.

They'll even (usually) give you a CD of your scan results while you wait after (probably varies by hospital).

I assume if there's something critical they'll call you immediately, otherwise you just wait for the results.

Warning, if you're new to this: Stop speculating on outcomes, you're likely wrong, and don't look up and take to heart the stuff you read on the Internet. It rarely gives you the warm and fuzzies.

Let us know what happened,

Best!

- Tab

They just called and said I can wear what I want, just no metal buttons on my shirt.

they always make those rooms really cold

Can't speak for every radiology center, but that's my experience.

Obviously the techs won't usually tell you anything (some will, but most won't).

The VA is good about that.