Hi all
I want to ask you folks a couple of questions. See the questions, then below see why I am asking:

• Has anyone heard of Radiation machines faulting and having to be restarted while the patient is in there? TOMO 2-3 times a week it would shut down while I was in it?
• Has anyone heard of Radiation machines breaking down on a regular basis while they are getting boosts or just using that type of machine? (I forget the name of the boost machine)
  My boost machine was also needing repair three of the five days I needed it. They actually tried to postpone my last treatment because it was down.
• Can anyone suggest what I might do nutritionally and medically to raise my odds against having to go through the hyperbarrick and surgery route? (SP)
  

I saw a dentist today at UVA (University of Virginia hospital) and was told the ulcer I have been speaking about in the forum is a radiation ulcer. The dentist also saw exposed bone in that area. This is about a BOM with a skin graft that detached after it became ulcerated. I had been complaining about pain in this area for months and doctors kind of assumed it was from the radiation treatments and surgery. They never really looked at the surgery area until a month after radiation. They said this was normal.

The dentist said that I am healing slowing in this area. He gave me a strong rinse and scheduled an appointment in a month.

I was very fortunate as my machine never was under the weather once during my Tx even though I was warned by the techs before I started to expect a delay or 2.

I experiences delays on three separate occasions during my 7 weeks of treatment.

I was in the TOMO machine 5 days a week and 2-3 of those days the machine broke down while it was treating me. I had delays at the end but I am concerned about being inside while I am being radiated and the machines would fault and need to be restarted. They would leave me under that damn mask until they got it working again. They would tell me that it could not harm me, but they said I would be fine through this. Now I have something that can be potentially worse than the cancer?

I don't want anyone cutting on my jaw and removing teeth. They told me I could keep my teeth when I was considering taking them out. So why is it not so at this point? They want to look after a month to see if I heal any. My complaint for months was that everthing is getting worse. Everyone wrote my complaints off as being caused by treatments and original surgery.
Sorry. I am so over this. It's alright to talk about oxygen chambers and surgery while they don't have the balls to help with pain issues now. To me, I cannot help but think something was wrong and I got burned as a result of it. That is why I am trying to find out the experience of others. What is the norm? I have lost faith in at least one team of doctors.

Again... sorry about being angry here. The dentist said I was healing slow, but a ton of tastbuds are carpeting my tongues after a month and a half of doing the radiation. I can taste meat and cheese and a lot of stuff. I had my first meat and veggie meal today. Afterwards I ate a ham and cheese sandwich. Point being it that I don't feel like I am healing slow anywhere else. That is why I am upset..

I going to go back to my cave.... Thanks folks.

Understand the anger.

Husband wanted a "cave" more than once.
Some days his taste still goes off or wonky.
Hopefully the taste goes off when I cook a really lousy meal.
But it stinks when it happens to strike during a super meal.
Last night the very occasional beer tasted funny to him.
It is surprising how long the healing can take.

Margaret

Hisnibs,
I had the Tomo go down while I was in it, but it was during the CT scan phase, not the RT treatment phase.

Several other times it didn't like something and would spit me out before it started one of phases.

After a short delay they always got it going again.

hisnibs

My radiation TX machine broke down at least once a week after I had driven to the CCC and was waiting for my turn. My 8 weeks of radiation stretched out to 10 weeks as a result. Very frustrating. Congratulations on getting your taste back so soon. Based on my experience plus what I have read here at OCF you have recovered exceptionally fast in the tastebud area which is probably why your normal recovery in other areas seems so slow.

hisnibs,

I have ulcers on both sides of my tongue. The left side is almost gone three weeks out and the right side still hurts but not as bad as it did the past few weeks.

My RO said ulcers can last 3 to 6 weeks. I think I may go out the 6 but I can take the pain now that I know it is diminishing.

My IMRT machine went down on me twice in treatment. The tech said that it has a failsafe that counts the level of rads. He said it will never give you too much and will give you what you need if it goes out to soon. So when it gets back up it will makeup any shortfall. I know this because I counted the buzzes every time. I was getting five 15 second buzzes and I got 6 one time and two were shorter times. I was counting my breaths every treatment and noticed the change in treatment. I had to ask when I got up and only then did they tell me the machine had an "un-scheduled pause". It happened again one more time and we all commented on it.

Kelly

thanks...It appears not to be an unusual event then.

My doctor said I should not expect to get taste buds back. I did not get the impression he was just giving me worst case scenario. Anyway, if it helps I do the zinc tabs. 50mg for about 10 days three times a day. Since then I am taking about two tabs a day, sometimes together sometimes not. My rads were conentrated toward the fron of my mouth. MAy be that saved the tastebuds in the back.

Can I ask? I have a pain arsenal of vicadins, percocet,morphine and tramadol. None of them work by themselves. My doctor said there was nothing else to give me for pain. He told me to experiment with combinations of what I have and not to exceed 4 grams of actetiphetamine(SP).
Why doesn't this sound like right advice to me? I have become tolerant to these medications while I have severe pain in my mouth, from my gums,my jaw from gritting my teeth, my neck and throat down to my left shoulder. Some pain is constant. I take one morphine 30mg and 2 vicadin 7.5 for breif control of 3-4 hours. Taking less does not carry control over. I have to start again with both morphine and vicodin.
Does any of this sound right. I feel like I am being left on my own to medicate. According to doctor next step is pain management people. I am so tired of pain after 4 months. Any pain sometimes.

They make pain management sound so far out there I am afraid to talk to them, like I should be able to grin and bear it. On the other hand I am told my ENT is one of the best on the planet.
I broke down and made an appointment with an ortho surgeon.... I think that is right to look at my mouth to see what he thinks about my healing issues?

I wonder who should I see? The cancer center in Richmond I would like to see can't get me in until end of December.
It is probably all in my head but I think everything is getting worse.

This might explain me:
My father's esophageal cancer went undiagnosed until 6 weeks before he died. For years his doctors called him a hypochondriac. It made him crazy. When MCV hospital doctors requested his medical records from the military they were shocked by seeing his cancer so advanced and clear in the x-rays.
I am very sensitive to this whole experience. It is one thing to pass away trying to fight something, but to have nothing to fight and people thinking you are weird for complaining would be sensless. It was sensless. I don't want sensless, but feel like I am the discoverer my cancer, even when dentists saw it for weeks, the discoverer of something wrong after the radiation began.... I have felt this ulcer pain for weeks while my complaints were associated to surgery and radiation.
I am losng trust and can't get anything to sync up..

Sorry.....

One of the residents at the hospital called today. He was being honest but I was asking about Hyperbaric chambers and he did not seem to think they were a quarantee for ridding me of this problem. I appreciate the honesty. I can't see any way right now that this situation will improve. The highest concentration of radiation went into this area. Looking back I remember the dentist raising an eyebrow when reading the rad dosage for front of mouth. He thought it was high. Think I'll go away for awhile to deal with this. I thought by now I would be helping people here and I am just getting more and more caught up in my situation.
Thanks to all for the conversation.