Deb:

Im so sorry you are so sad. When I got cancer all I did was cry too, even at the slightest things. When all is said and done, Im sure you wont be as disfigured as you perceive yourself to be. The swelling will one day subside. I didnt swell from radiation at all.

Please use your inner strength, everyone on OCF will be right behind you supporting you every step of the way. If this has you so troubled as you describe, ask your doctors for a referral to talk to a professional or a prescription for some anti-anxiety meds. Many people with oral cancer need that to get thru it.

Ask any question you need to. Many have been thru this before will guide you. Radiation is hard but its something you can do.
Hang in there.

Hey Deb,

We all know what you're going to go thru and it's really not as bad as we all feared.

Look the first 2 to 3 weeks of rad are almost a non issue and then you will have to deal with about 6 weeks of being uncomfortable to miserable but there are many things that you can do to make that period go better like eating/drinking 2000 to 3000 calories each and every day and drinking at least 48 ozs of water each and every day. DON'T MISS ONE DAY...THAT'S AN ORDER!!! It's best if you can do that by swallowing but if you go the Peg route you still need to swallow each and every day so those muscles won't forget how to work.

Keep on top of the pain. There are millions of different pain combinations so if at first you don't find something that works keep buggin them until you get relief. Everyone's pain threshold is different so don't hesitate to ask if you are in pain. This is not a competition to see who is tougher. This is more like the PE coach from hell and we just want to finish the class anyway we can.

Re the swelling post Tx we call it our Turkey chin and it's not that big a deal and it does reduce itself over time.

I have always maintained that this cancer thing is 50% mental and it can really make things go better if you just keep a positive attitude and know that your trip through the dark tunnel will be a short one and you will emerge cancer free and you will reclaim your life back again as if nothing much happened.

Hang tough and ask any question you may have and bitch to us as well. We will be there every step of the way. We are your internet caregiver.

Always be wary of categorical statements such as "there will be more swelling in your neck and it will never go away." In my case, I have muscle and soft tissue changes (fibrosis) from the radiation, and nerve issues from the neck dissection. My neck "feels" somewhat tight much of the time, but it does not look markedly different to others. (We always think that physical changes are more obvious than they really are -- I felt like Frankenstein the first few times I went out after my neck dissection)

Many of us do get lymphedema, aka "turkey neck" from neck dissection and radiation, but this often improves after awhile, as it has with me.

The "C" word has taken on such a stigma in our society, that when we get the diagnosis we think there is no way we can cope with all of the "stuff" that follows. We are wrong. If this site is anything, it is a testament to individual determination and strength. We do not find resolve, it finds us. There are also legions of survivors out there who don't come to this site.

While this is not a fun experience, it is very doable. I think I have emerged as a better person, and that ain't all bad. ;-)

I so do appreciate everyone's responses and encouragement.
Today I had another prep visit to the radiation oncologist and they get ready to proceed with my radiation. As before mentioned, I am very wary about losing my salivary glands. He told me today there is a new drug called ETHYOL that will help to preserve the salivary glands. I am suppose to go Wednesday to speak to another oncologist regarding the side effects.

I want to take these injections, which will be administered everyday before radiation. Does anyone know of this and has anyone had the ethyol treatment?

Deb --

Do a search (search box in the upper right of each forum page) for Ethyol, also known as amifostine. Lots of posts.

-- Leslie

Deb,
you have 3 pairs of salivary glands (not counting the minor glands). If they get nuked or not depends if (and how much) they are in the radiation field.

M

I had Ethyol (aka Amifostine) injections prior to each of my 39 radiation treatments. In my case, I always reported to the Chemotherapy area of our CCC before radiation. On Mondays I received hydration, a steroid, anti-nausea medicine, my Cisplatin, then my amifostine, which has to be given within 30 minutes of the radiation. The balance of the week I just received hydration and the Amifostine. It is given in the IV for hydration, so no issues with the administration.

You can get nausea from the Ethyol. Some people get severe nausea. At the beginning, I had no noticeable side effects from the Ethyol. About halfway through, I began having nausea about 45 minutes after getting the injection. It never progressed to vomiting, and was short lived (< 30 minutes), but it caught my attention. ;-)

Keep in mind that my submandibular glands were removed during my neck dissection (not malignant, just being cautious due to BOT location and 1 lymph node involved). As these provide about 70% of your saliva, I have issues with dry mouth today. While I have to be more vigilant with my dental care, use the Biotene products and drink lots of water, it does not dramatically interfere with my daily life. Like anything else, you get used to it. I do a lot of public speaking, so I have to be mindful of the water, as the mouth will really dry out after talking for 30 minutes or so, and also after exercise.

My credo during treatment was to do whatever the doctors recommended, including the Amifostine. Best of luck!

Just a uick note to Deb to say I also was diagnosed recently and am also living in terror. How that helps, I'm not sure.

As for teeth - my insurance doesn't cover dental, no mention was made of seeing if I could have my teeth done at the hospital under the cancer plan. I was simply told to go away, find myself a dentist and then treatment would start a couple weeks after that. Which is why I will be starting treatment in a week when I was diagnosed in June.

There was no sympathy for either my dental phobia or the fact I could not afford to have my teeth pulled.

Anyway... enough about me. Maybe Deb and I can be the Terror twins? Or Terrified twins?

anne (angry, hateful, and mean)

Anne,

Your signature bothers me...are these feelings you have because of the cancer or the system? You really need to clear your mind as you start Tx so your body can allocate all of it's energy towards Tx. PM me or start a new Post if you want so we don't hijack this one.

As stated when I first started this post, I had 45 lymph nodes removed from the right side of my neck on July 11th. I've been terrified and full of anxiety every since. My financial status is adding more stress. I am not able to go back to work (being a teacher, my voice is not working correctly), and the bill collectors are calling non-stop.
I was told 4 weeks ago I need to have a dentist check my mouth before the radiation. I understand all of that but when you don't have dental insurance and already are in a financial hurricane, it doesn't help. I've exhausted all resources in trying to help me in this situation and was told again by my oncologist today they will not proceed with radiation until I have a written release from the dentist and any dental problems taken care of. WELL, this is the last straw. I have absolutely had it. If the cancer kills me, so be it. I am going to take my chances and not do the radiation. I am tired, and I've cried enough over all this. I've had so many meltdowns, the stress is probably only increasing the cancer cells. SO, I'M NOT DOING THE RADIATION. FINAL! I am going to just live my life the best I can.
I posted this because I want to know if anyone else refused the radiation? If so, please contact me or email me at [email protected]
Thank you all for the many replies