Hi,
i'm Dave, a 46 y.old male, non smoker with a BOT cancer diagnosed a year ago. underwent a first neck dissection followed by 7 weeks RT to BOT and neck area.

6 months later, another lump surfaced on the contralateral side, yeah I know, bad news...

4 weeks ago had a second neck dissection, on left side this time. One node was found to be nasty out of 48. evidence of early extracapsular activity but resected with clear margins.

The next step recommended is another course of RT to that side. However, the downside is that it will zap the only parotid gland that I have left which will then have serious effects on saliva production and maintenance of healthy teeth.

i have a few days to decide if i want to go ahead with this or just leave as it stands. I was told there might be 30-50% chances of recurrence in that neck area without RT.

There was also a discovery of another node which suggests possible thyroid cancer but it doesn't seem to be very urgent considering the more aggressive nature of the other SCC.

I would appreciate some viewpoints from others who might have been faced with a similar situation, any advice will be much appreciated.

Cheers
dave

I'm sorry to hear that you are going throughths again. I take it IMRT is unavailable to you there? Have you thought/heard of amifostine? Some folks here have had it.

If it were me I would have the radiation done to improve my overall chances.

I agree with Tim; if they haven't reached your rad. saturation limits, Give it an added bit of insurance.

Amifostine is an option, although if you've already had radiation previously, you're likely not going to get a full course of aggressive radiation this time around. The parotid has a permanent damage threshold of somewhere around 6000 units of direct exposure. Below that and you may retain partial function at least on one side.

I guess by my thinking if the option is having limited/no saliva and having to use a water bottle constantly compared to it not mattering whether you had saliva or not, I'd go for needing the water bottle.
Good luck with whatever you decide
Wayne

thanks stoj,
yeah IMRT is limited in its availability here although i was told it would not be of much advantage here as they want a wide filed of radiation to cover the neck and lowr shoulder area anyway.

I would like to hear from those who have amifostine, is it administered concurrently and in what form (pill or IV etc)...
Does it make a significant difference to saliva production ?
thanks

Hi Dave;
I just finished radiation/chemo in October and amiphostine treatment was recommended, especially since I had lost my right side saliva glands in a February neck dissection.

Amifostine is usually injected about a half hour prior to radiation treatment. They are not administered every day but I endured the Amifostine shots three days a week throughout treatment. I say endured because it is really hard for a lot of people to handle the nausea that accompanies this treatment. My Oncologist and the nurses were amazed that I was "handling" these shots so well and I watched a couple other folks fall off the treatment from the side effects. As I got into the fifth week of treatment I really started getting sick. Hard to say if it was from the accumulative effects of radiation, the chemo, the amifostine, or a combination of all. I do know that the nausea really escalated after radiation on the days that I got the shots.

The one plus to all of this is I am 8 weeks out of treatment and I have pretty good saliva production. During my last week of radiation my neck and face had the "really bad sunburn" look, and my wife asked the RO why I had clear skin in two areas around my cheekbones and everywhere else was burned. My RO told her it was due to the amifostine doing its job and protecting those glands. I am glad I took the treatment as I believe it greatly benefited me.

Regards,

Steve

Hi Dave,

Jack had amifostine given as a shot like Steve described. If you do a search of all open forums you will find lots of post describing people's experiences with it. There's no right or wrong answer to this - as you're probably already finding out - it's what you can tolerate and what makes sense to you given your individual treatment plan.

You need to talk to the radiation oncologist that will be treating you to see if this is even worthwhile if the gland is going to be fried. In Jack's case they thought they could minimize the impact on at least one side so the amifostine made sense to try. If that's not the case then I'd ask if there was any other benefit to it.

If you decide to try it you need to be prepared to follow their very specific regime about drinking fluids 90 minutes before, and taking strong anti-nausea drugs. Jack didn't have the nausea that Steve experienced but many, many others here have and it's the number 1 reason people don't complete the series of shots. We were told that the shot had less side effects than having it IV. Jack found the shot painful when it was being injected but other than that didn't have any skin reactions or problems.

There is no universal treatment plan so all of us have had different side effects and results. We've found this site very helpful in understanding the types of things to expect. There's good support in participating in a forum like this.

Your post didn't mention having chemo at the same time as the radiation. We were told that boosts the effectiveness of both therapies. There are several people with recurrences who are being treated with Erbitux, has that been discussed with you?

I think settling the primary treatment course is the most critical decision right now, is there a place that you can get a second opinion? Is there a medical oncologist on your team as well as the surgeon and the radiation oncologist? Did they present your case to a tumor board? I think I'd want all options considered at this point.

Good luck and let us know what you decide.
JoAnne

Hi Dave --

I don't have much to add from what JoAnne wrote other than my husband Barry took amifostine (Ethyol) all through treatment, he also was diligent about the hydration beforehand and also, took (as recommended by Medimmune, the manufacturer) a powerful antinausea drug (Zofran) 90 minutes before the injections (yes, two of them, each 250 mg, one in each arm).

He did not take the Ethyol on chemotherapy days, the docs said it would not change the effectiveness but would reduce the chence of the lingering nausea which causes many to quit the drug.

Does it work? It did for Barry. He had stage III/IV tonsil, base of tongue and two nodes SCC and his radiation plan should have pretty much knocked out his right parotid, per his RO. But it didn't, the right salivary gland is functioning and producing saliva and this was almost certainly due to the amifostine, according to his dental oncologist (an expert on saliva and radiation side-effects). There is also recent data showing reduction in mucositis and Barry also had less mucositis than most and could eat all the way through treatment.

It is a nasty drug and hard to handle, but worth trying. Barry says it was much worse than the chemo, but he has never regretted taking it.

Gail

thanks for your replies Joanne and gail.
My team seems to think that chemo could be an option, although one that may have limited reduction in overall survival but with significant side effects.

About ethyol, it is interesting to see positive outcomes but clinical studies have shown that up to 35% of patients still retain use pr partial use of their parotid gland even beyond the recommended levels of 30gys. Ethyol increases that rate by about 20% so it is hard to say if the effect is really from the ethyol or not.

My biggest concern I guess comes from the decision of getting RT now or saving it possibly for another time in the future. If you have watched that show "Who wants to be a millionnaire", you will know that you get 3 lifelines i.e. help in some form from the outside.
The analogy here is: do I want to use one of my lifelines now or save it for later when i might really need it.

dave

I took amifostine every day for the first four weeks of my rad treatment and then every other day after that. I have very limited saliva and the amifostine made me vomit almost every day that I took it. I think it was worth the gamble that it would help prtect my salivary glands but I'm not sure it worked all that well for me (I gather there is some data that it doesn't work for everyone) and it made my treatment much MUCH harder than it would have been otherwise.

Just the other side of the coin.

As for whether you should get the rad, if I were you I would--and I would have the chemo too. Losing salivary function is quite a hassle but not nearly as bad as recurrent cancer would be!

Nelie

Dave, I just wanted to add this: if you do some research on the survival rate for people who have a recurrence, you will come to the conclusion that using your magic radiation bullet is definitely something you should do sonner, not later!