I have ORN, plus continuing (and endless) mucositis, plus severe ulcerations on the side of the tongue where the cancer was. One year post tx, I can barely eat, very limited taste, unresolved candida, in spite of months of antifungal tx. So, as it was so eloquently put, the good news is you are exquisitely sensitive to radiation, and that's the bad news. On the other hand, no live SCC cells in either the tongue or the nodes. I have to focus on that for sure.

I just finished my third HBO tx and I HATE it. I would rather have IMRT or all day PET scans or chemo anything else. Perhaps it is the chamber that I am in, but it requires using a very heavy, very uncomfortable mask for oxygen delivery. The mask requires negative pressure, so while breathing 100% oxygen, you feel as if you are starving for air. After the first two txs I also got terrible sinus headaches. Although I hope not, I am afraid that the vision thing will happen as well, since I seem to attract very low incidence rate side effects.

The sessions do last for two hours with 2 5 min breaks plus of course travel time. Because of the mask, it is difficult to read, to sleep or do much of anything, except listen to really crappy radio. It is like being in a submarine without the interesting stuff, that's for sure.

WHat is discouraging about this forum is that apparently everybody else thinks HBO itself is a piece of cake. If it is, it's a mudcake, if you ask me.

I also looked at all the data about efficacy, and as was pointed out earlier, there is very little good data. Of course it would not be possible to do a randomized trial, but the limited prospective data that there is does not show impressive efficacy. The arguments about the data are endless because the one prospective study that I looked at didn't have good matchability between the HBO tx group and the non HBO tx group. One of the big issues with any trial of HBO is that there is no clearly agreed to protocol for HBO so it attracts a mixed bag of pts. I think a second issue is that at some of the investigators of previous HBO studies did have proprietary interests in facilities. If you saw the news today about the MIT study on CT scans as a detection methodology for early lung cancer, proprietary contamination of studies and PIs is apparently endemoic.

I finally agreed to do HBO after months of hedging, even with the ORN, because there was very little to lose and much to be gained. If I can avoid a surgical procedure for the ORN or even if it will help resolve the ulcerations by improving the circulation, that would be an excellent result and a good investment of time, money and effort.

Does anyone else have negative feelings about HBO? Did anyone else have the kind of group grope chamber I am talking about with the masks?

I can live without the pizza, but it would be nice to eat something besides pasta, eggs, smoothies and oatmeal.

I will keep you posted, and perhaps my experience will improve and what I am feeling now is just the early stages with the good stuff coming later.

Best wishes,

Bonnie