Minnie:
Do you remember if your eyesight was affected so much that you werent able to drive? Do you feel that it helped you to heal faster?

Markus:
It sounds like you have recovered very quickly. Gaining weight is a good indicator that you are getter better. You are very lucky that you have full range of motion in your jaws. You are even luckier that you can eat pizza! How I wish I could.

Im hoping when I do go thru the treatments that I will benefit not just for the upcoming dental work. I want to be back to my old self so badly. I have a few areas that Im hoping will also improve like my jaw opening wider, full feeling back in my cheek, and more energy. As far as my speech goes, I struggle with 'th' sometimes. Try saying amethist, forsythia, or crysthanimum (sp) without the th, it doesnt quite work out.

Christine,
yes I consider myself lucky. Things happen slowly and you have to give it time. You are a couple of months behind me in the treatment. The numbness in cheek and skin is only going away now..... either that OR one adapts to the feeling and considers it normal (or both). Same with energy, I was functional/working before but recently there has been a big improvement.

Re th ..... hmm now they might think you are german .. very exotic! go with it!
Joke aside, have you considered speech therapy?

Best
Markus

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

Bonnie,
apparently you have a different type of hyperbaric treatment than others. What I and others have been talking about different. In our case you do NOT use a mask, instead you are in 100% oxygene and under pressure. So you breathe normally. You do however have to take 2 air breaks. This is the only time (5min or so) when you use a mask to breathe REGULAR air. I agree with you that using a mask sucks! I think it sucks even if you do this for a very short time. (generally they have to wake me up for it). Even so the mask should be adjustable so that you do not have to suck for the air. The mask that I am using does not allow any adjustment either but then it is only used for a very short time.
Suggest you explore if the mask can be adjusted for less tribulations, alternatively shop around for a mask-less chamber.

Re food: try shrimp (lots of butter) and smoked salmon (thin stripes, not the whole fish).
Also mushroom omelet (wet) amy be ok.


M

Since opening the board we have never had an O2 treatment patient have a mask delivery system post on these boards.

The tank that I am using is according to their literature the biggest and most advanced in Illinois. It can seat twelve, although with any more than three, the misery would compound because the best part about it is being able to lie down during the thing, if you can get the mask and the hoses to rest comfortably.

Lucky me, I guess. Are all the other tanks for single person treatment?

Thanks especially for the food suggestionsm Minnie. I have discovered the omelet and the smoked salmon. I am (was!) a very dedicated foodie in one of the best food cities in the country and the loss of complex taste has really affected my quality of life. Nevertheless, I am working hard to adjust. One of the few things that work is osso bucco, very tender stewy lamb or veal shanks. For some reason, most likely the location of my cancer, the one thing that has tasted consistently good through the whole ordeal with coffee with heavy cream. So, for calories, I load in the sugar and the cream, although I can't really perceive the sweetness. Where there's a will, there's a way. Right! Of course right!

Best wishes,

Bonnie

In re the mask, it does truly suck! The air break uses ambient air so it is a major relief, but the sucking through the mask for two hours is miserable. I have asked them about adjusting it, but apparently it isn't possible.
Bonnie Glen

Bonnie:

Thank you for responding, I appreciate your feedback about HBO treatments. After going thru chemo and radiation, my thinking is it cant be worse and it sure cant hurt. I would do just about anything to get back to my old self. This whole thing has been one long nightmare which I have endlessly suffered.

Currently I have gotten another sore in my mouth which hasnt healed so Im getting a biopsy on Monday. The outcome results are what will determine how soon I will procede with HBO.

Bonnie:
that really sucks! The mask use is totally inverted. When you dive (recreationally) you use a breathing mask (regulator) for 45min - 1h or so but in that case a) something interesting is happening and b) there are regulators that allow you to adjust the resistance of the demand valve.
re chambers: check this out for a picture (yes the tanks are singles and you are lying down)
http://www.oralcancerfoundation.org/dental/hyperbaric.htm
My suggestion would be to see if you can go to a different facility. (try a wound healing clinic).
osso bucco.... that sounds good, I will try this.

Re statement:
"The tank that I am using is according to their literature the biggest and most advanced in Illinois."

HA! The power of advertising...as long as it sounds convincing it does not have to be true. (> newspeak).
.... bigger... so what????


Best

Markus

I believe that in the large multi-person chambers you do wear a mask. I do know that the entire chamber is not under pressure to where a nurse is in there along with the patients. The attending nurse is not being subjected to the oxygen, pressure, etc.. All of my treatments have been in an individual chamber where no mask is used except for the 2 5 minute air breaks taken during the 2 hour dive.

Bill D.

Truly I appreciate the suggestions and will explore moving to a new treatment site. It took so long for BC/BS to approve this treatment, that the likelihood of being able to do anything about it is pretty minimal. Like most of us through this long, drawn out ordeal, I am sure I will soldier through, but now one yearpost treatment, I really had no idea that the effects would be so long lasting or extensive. The new normal remains an elusive standard.
THis disease gives whole new meaning to pain in the neck.

Best wishes to all,

Bonnie