Ok I give up what is "sall dos"? I am not sure about "perinural" either? Did this discovery change your staging?

I don't think anyone has gone through radiation without some side effects (except Danny Boy of course). I had IMRT and the maximum amount possible and have minimal side effects today. Taste, swallowing, and muscle tone are about normal 2 1/2 years post Tx.

Erik, Moffit is a CCC.

Just want to add a "mundane" suggestion. To help with shaving his neck area after the bilateral neck dissection, we bought the best electric razor we could find. It has several small attatchments. After the scar was pretty well healed, John started useing this to get those little prickly hairs that grow close to the scar. He finished 30 IMRT txs July 8th and is still haveing issues with phlem, mucous, thrush etc., but is eating a variety of foods with lots of sauces and gravies. Good luck to you. Amy

I think he means "small dose". And Gail is speaking in absolutes, (which we have agreed not to do here) when she says that Amifostine does work. It does not have beneficial effects in everyone that uses it, and it is poorly tolerated in about 50% of the people who try to use it through their course of treatments. Since OCF is working with the company who manufacturers it on an awareness campaign, I have had a good look a the actual numbers from them. They acknowledge that there are two issues that preclude doctors from even mentioning it to patients (something they would like to over come by having patients ask their physicians about it to begin the dialog) and that is about a 50% effective rate, and a poor tolerance to the side effects. Having said all that, I think that the POTENTIAL benefits are worth trying it to see how well you can tolerate the side effects, since you MAY indeed benefit from it.

I just want to put my vote in that you explore IMRT versus conventional XRT.

IF your condition is compatable with IMRT, everything I've read supports it for pin-pointed accuracy and reduced side-effects.

Just something else to consider while you're making treatment decisions.

Also, I had my surgery first (June/July) and the scars were fine. (Before radiation;) I think if you have a talented surgeon, it will go fine. I was VERY apprehensive about having my surgery (people on here can tell you about my ordeal:), but in retrospect I am glad I had the surgery, and think it's long term negative impact will be minimal.

Tom,

Keep in mind, we are not doctors and DO NOT know the entire siyuation. As you are already a few weeks into your radiation treatments , just run the IMRT thing past your radiation guy to make sure you are on the same page. Not everyone is a candidate for IMRT and, since your doctor went to medical school, he may have good reason for using conventional radiation.

Glenn

The entire discussion about IMRT and XRT at this point is probably academic since I seriously doubt that they would change your treatment plan at this late date since you are well into it, not to mention Glenn's point. Not all H&N cancers are treatable by IMRT. Like Glenn says also, I would run this by your RO so you can feel confident about your treatment plan.

"Small dose" doesn't make sense since they either give you the full standard dose (typically 72 Gy which is hardly small) or they add a several more Gy as a "boost" (81 Gy).

Glenn and Gary --

What HNCs are not treatable by IMRT? I ran this question by two ROs and our radiation physicist and they said -- essentially none -- although RP added that since the planning is a major factor, IMRT poorly planned can be less effective than XRT well-planned. But that the side-effects from the latter can be "severe" (their words, not mine) and at Hopkins they are getting better results with IMRT (this is with concurrent chemo) re cancer control in any case. More dose to the target is what RP said. Our MO confirmed that since they have started using IMRT/concurrent chemo they are getting improved results even with Stage IV cancers, with fewer long-term side effects.

This is not to say that XRT will not be effective or that it does not have a place. But it does indicate that one should explore all (and ask hard questions) this before starting treatment.

Gail

Gary, I'm not by anymeans an expert on this but-- perineural invasion doesn't affect your stage at all--which is one reason why just looking at things by stage alone is misleading. It comes from looking at the pathology of the tumor itself--were there any nerves involved--if so, you have perineural invasion.

Since I have it, and it's the main reason why rad. and chemo were recommended to me, I did some reading up on perineural invasion and it is a significant predictor of cancer recurrence. In one study, it was the most significant predictor, stage being distinctly secondary. BUT this too is somewhat misleading (and I'm glad I had enough statistical knwoeldge to know this) because stage and perineural invasion are correlated--its rare to find it at stage I and more common at more advanced stages. So if it's entered as a predictor into a regression equation first, it can look like it's the big predictor but really that's because stage is really in there too.

Anyway, I know that's kind of a technical answer and I know we have to be careful with statisitcs here but I felt they were soemwhat necessary to answer this. I hope I amde it clear they have to be trated with caution as well.

But it's the one reason why I had aggressive treatment even though my nodes were clean.

I was initially, and continue being treated at MSKCC in NYC. They are one of the top CCC's in the world. I had a very unusual cancer, adenosquamous cell. It was, and I guess continues to be very aggressive. To bring it down to basic terms, they felt my best chances were a complete blast of the entire area. I was treated over 3 years ago and chemo/radiation was not the gold standard for tonsil cancer. MSKCC, I'm sure, can map out a proper IMRT plan but they felt I was better off with 3D conformal. I would add, I ate by mouth during my entire treatment, which included a mandible resection and 7 weeks of radiation and was completely back to a full diet within 3 weeks. The problem here is that you, as a scientist, speak in absolutes based on your research. I speak on direct personal knowledge. I have learned that there are no absolutes in cancer treatment and for the people at Hopkins to suggest that there are is ridiculous. You suggest to a member, well into his treatment, that he is not getting the proper treatment. I suggested that he just make sure he and his doctor are on the same page. In your brief period on this board you have caused countless people to question their treatment choices and I for one am tired of it. Including Danny and myself there are only a handful of us that know, firsthand, how unforgiving this cancer can be. Personally, I think you would be of better service talking from the position of a caregiver and leave the scientific discussions for breakfast with Barry. As I have stated before, and I'm sure you'll agree, I am not the brightest bulb here so I guess you should take this post with a grain of salt.

Glenn

Hi Gail,
Just curious. How do they treat an unknown primary at Hopkins which is what I had the first go round. I had 36 conventional XRT treatments. but that was 1997. If they have nothing particular to aim at, do they still use the IMRT?

Take care,
Eileen