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Has anyone else undergone Hyperbaric Oxygen Chamber treatments?

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I'm a five year survivor (so far) of squamous cell carcinoma in the base of the tongue. Everything was going well until the summer of 2007. That's when I started having difficulty swallowing due to the radiation treatments back in 2004. My neck tissue was hard as a rock. I've been having esophogeal dilitations monthly since June of 2007.

In February, I started taking oxygen chamber treatments with the hope that it would improve salivation and swallowing. I can feel the difference in the softening of the neck tissue. My gastroenterologist confirms this by saying it is now easier to fully dilate me.

Unfortunately, I've been having more trouble swallowing recently. The throat muscles don't seem to do anything. I have to literally wash the food down with milk. Also, the saliva production doesn't seem to have improved.

I've been through 77 treatments so far and I think the doctor wants to go up to 120. I'm wondering whether it is worth continuing. Has anyone out there shown improvement in these areas after treatment?

bobby23's picture
bobby23
Posts: 1
Joined: Jun 2009

I went through about 30 sessions about 5 years ago to "make it safe" to extract the remainder of my deteriorating teeth. I'm a stage IV squamous cell tonsil cancer survivor. It took months for me to qualify getting into the chamber for treatment because of my blood pressure levels. I acquired labile hypertension about 5 years after radiation treatments. Labile hypertension means my blood pressure goes way up and then way down. The story with this deserves another write-up of its own and I hope to get to it later.

My ability to swallow has deteriorated significantly over the past few years. Dysphagia. I'm a ten year survivor. My swallowing started becoming more difficult about 2 or 3 years ago. I now have a peg tube which I've had for a little over a year and a half. I drink a little water and have sips of coffee and that's it.

Personally I don't know how much the hyperbaric treatment helped me personally. I did have the teeth extracted with no problem. Really I think of my own hyperbaric tx as a safeguard. You're the first person I've heard of anyone using hyperbaric tx for swallowing and saliva improvement. I had electro-stimulation therapy for swallowing about two years ago and had limited success.

My best hope for any improvement I believe is the work I do with qi gong exercises. Qi gong is a chinese set of body moves that work with the various body systems. I do my practice gently and in a meditative, spiritual way. It's funny, but some of the qi gong moves are the same moves recommended by speech pathologists. Actually I don't think many of the doctors I've seen have much hope for reclaiming my swallowing capability, but I haven't given up hope. It's really a miracle that I'm alive anyway and doctors have told me that.

The doctors I've seen, including some stellar-quality pulmonary and cardiology chiefs of staff at University of Pennsylvania hospital at this point don't have medical solutions. It's been a big process for me to connect with doctors knowledgeable about cancer treatment late effects. Believe me, I've gone through a lot to find doctors that were willing to listen to me first, then be knowledgeable about late-effects.

My cancer late effects started coming in 5 years after treatment. I have moderate to severe COPD, moderate to severe dysphagia, labile hypertension, and fairly frequently occurring, seemingly random onsets of dizziness and physical exhaustion. Even with these symptoms I'm fairly active and very happy to be alive.

mark10
Posts: 4
Joined: Jan 2006

Bobby;

Your right, there is not much information about the long term effects of radiation. I have gone thru all of the best in Chicago and gone to the Mayo Clinic, Univ of Pitt, and am planning to go to the Cleveland Clinic in a few weeks. I think there is acknowlegment of the problem but not much thought on what to do about it.

I do regular swallowing exercises and will look into Qi gong.

Thank you

Mark

mark10
Posts: 4
Joined: Jan 2006

George;

I am a four year survivor on base of tongue cancer. I was treated at Northwestern in Chicago that included swallowing exercise as part of the recovery procedure to heep tissues from hardening. I was told to do a series of five exercises three times a day. I have the issue of SPONC that describes the therapy if you would like me to fax it to you. BTW I am itrigued by the HO therapy, is it done after the dilation?

Immediatly after treatment I went thru series of dilations over a 12 month period to stretch out a stricture in my throat, I had them done with the tubes and bloon dilations. It seemed to be a waste after a a year and I stopped.

Have you had a swallow study done? I found them helpful I understanding my difficulties with swallowing. I also found it more helpful to speak with a Head and neck surgeon that specalized in speech and swallowing, the have a much better understanding of the workings of the base of tongue than a GI guy would. To me it sound like you have a diffent problem that a throat stricture.

Sorry for jumping around,

Mark

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I've recently finished 80 Hyperbaric treatments. I can't say much for any increased saliva production but it has definitely softened my neck tissue. My throat tissue was really rock hard. It started getting that way about a year and a half after the last radiation treatment. Last month, when I had my dilation, my gastroenterologist said it was easier to dilate me fully. I have another scheduled for tomorrow so we will see how it goes.

I had a swallow study done a couple weeks ago. They stopped the tests after the liquids. I was aspirating into my trachea and couldn't clear the liquid out of my throat. There are times when the swallowing mechanism (throat moving up and down) just doesn't seem to be working. That day, it wasn't. They suggested that I have another feeding tube put in. Right now, I'm not going to do it since I can be hardheaded. I'm still eating solids but I do have to wash every mouthful down with milk and then give a little cough to get it back out of the trachea.

I'll have to do a little internet research on the qi gong.

sunshine_64
Posts: 27
Joined: Apr 2012

I am about 10 weeks out from my last radiation and developed a painful infection on top of my existing mouth sore on my tongue. Been on augmentin, valacyclovir, and the infection is still there. My doctor recommended I go to hyperbaric oxygen treatment, but I just got off the phone from the hyperbaric oxygen company and they said I would need 30-40 treatments, 2 hours each. Not only that, my insurance company hasn't authorized it (and they might not do so) and each session is $ 250. The number of treatments seems excessive, and on top of that this company spokesman said I would suffer bone and teeth damage if I didn't do this treatment. They haven't even seen me or read my file. I think these are scare tactics.

I fear that this is a scam and I am in no mood to spend another 8 weeks of my life in a treatment like this. Has anyone else had an infection treated like this? I am completely at a loss about what to do at this point. The oxygen treatment would be longer and more rigorous than even the original radiation. HELP, anyone?

hwt's picture
hwt
Posts: 1962
Joined: Jun 2012

my surgeon insists I do same before having dental implants put in...sounds like overkill to me

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

I have completed two rounds of HBOT in the last 12 months. The first was 40 treatments to see if it would help heal my ORN. It didn't do that. I then had 20 more treatments this past spring, right after a debridement. I can't say that it helped that, either. I do think it has helped to loosen some of the scar tissue in that area, but otherwise don't think it has been worth my time and the expense to my insurance company.

The doctor I'm seeing for my ORN says that there have not been enough clinical studies for specific effects of HBOT, but many docs prescribe it "just in case" it might help (and because it's not their time and money being spent!).

The two most common side effects of HBOT are fatigue and blurry vision, both of which last 3-4 weeks after the treatments end.

mike

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I'm sorry it didn't do more for you. I guess what works for some doesn't always work for all. I truly hope your ORN problem works out better for you than it did for me.

katenorwood
Posts: 1851
Joined: May 2012

George,
I was researching these treatments for lung issues. It all sounded so positive ! I hope things turn around for you. And please everyone with knowlege of these treatments keep me posted on how it worked for you ! Warmest thoughts sent your way ! katie

lola5071
Posts: 16
Joined: Apr 2012

My husband just completed his 16th treatment - he is scheduled for 30. He was not healing as quickly as they wanted (he finished up 7 weeks of rads and 2 chemo treaments in December 2011. They aren't painful at all. He just sits in the chamber for 90 minutes. We go to the ENT today for followup. Everyone we talked to spoke very highly of the benefits and we got second and third opinions. His other option was a very invasive surgery to his jaw. Will post again after we hear back from the ENT on progress.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I ended up going through the 120 treatments. It improved the rawness of my throat a little bit. At this point in time, as some of you already know who have read my other posts, I am unable to swallow due to the esophageal stricture. The week before last, my surgical ENT started dilating me since my gastroenterologist gave up on me. We are trying every two weeks for a while to see if we can get it to stay open. Tomorrow is the next dilation. I'm keeping my fingers crossed.

hwt's picture
hwt
Posts: 1962
Joined: Jun 2012

Will say a prayer for you and success with the dilation.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I appreciate it!

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I had Stage 3-4 tumor on Larnyx, a botched Quack Surgery, and over radiated. yes disasterous cancer ride....the later was where they killed all good cells and was rotting from the inside, I was told I smelled bad...They sent me to a hybericate Chamber for a Month, They where hour and a half sessions, until one day the pain was so great i took too many oxcotines and wound up in the emergency room and they slapped another trach in me...this had nothing to do with the hpbericate chamber, but for your info i feel it did help in some ways, before warned, have them double check and verify that insursance will cover this...i was told it was covered, then thed bc/bs/refused paymeny, i was hounded by creditors for a year of threats, and when your dealing with cancer, creditors are the last thing you want calling and recieving threatening letters for 83,000 dollars you don't have...some insursances just have now ok'd this procedure for paying it, others will not, because of the cost is so great, i finally got a little girl from insurance to stay with me and got it approved after the file had been closed, and they demanded payment...you talk about stress....take care my friend..Dennis in TN

sunshine_64
Posts: 27
Joined: Apr 2012

I posted questions about HBOT several days ago, after having it prescribed by my radiologist for ongoing painful infection on my tongue. I am about 10 weeks from my last radiation treatment, and have had an intractable infection on top of mouth sores for about 5 weeks now.

The interesting part of the story is that although both my oncologist and radiologist were enthusiastic about this treatment, about 20 minutes before I was headed to the HBOT facility, the manager/director called me to say that my treatment had been postponed because there is a danger of radiation burns if HBOT is performed less than 3 months from the date of the last radiation.

After experiencing severe radiation burns and skin breakdown from the interaction of my chemo (cetuximab) and 33 IMRT radiation treatments, I was greatly relieved on Friday to get this phone call! Curiously, my radiologist disagreed with this policy, saying that their
decision was based on "flawed" and "old" data. I wonder if she didn't just slip up here?

Does anyone else know about this "3 month rule"? I am also getting more skeptical about HBOT in general. It looks like it is useful in cases of potential bone loss and tooth extraction, but as far as I know, my recent MRI did not show any signs of these problems. I am hoping that the infection will gradually go away before my "three months" are up, but it is not clear that will happen. It is very hard to know what to do, given the disagreement among HBOT doctors (who created this policy) and my physicians. Any thoughts or experiences with this would be appreciated!

hwt's picture
hwt
Posts: 1962
Joined: Jun 2012

I will be getting some dental implants and have to do HBOT first. My surgeon said I can't start the dental work until 6 months after my last rad tx. but I don't know the reason behind the wait. I hope you heal before and don't need the HBOT.

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