Hyperbaric oxygen therapy

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Hyperbaric oxygen therapy

by sewkenmore on Tue Mar 20, 2018 03:54 AM

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I was diagnosed with tongue and tonsil caner on both sides with the tongue pretty much involoved all the way across at the base and had 1 lymph node involved. Cancer free after radiation and chemo. Six months almost 7 since last Radiation and Chemo. Unfortantly things have been going downhill since. Stuggled to eat and drink throughout treatment and up untill a couple of weeks ago. Ended up in the hospital with a throat that was almost swollen shut and while I was there we put a peg tube in. Sure wish I had of done that a lot sooner. The throat is due to radiation damage. It is full of nacrotic tissue. I has radiation and chemo for esopageal/larnyx cancer 18 years prior and was treated with radiation and chemo then.

Happy to say I am cancer free. Now we need to try and save the throat. Looks like I will be doing oxygen theraphy and was hoping to get some feedback from anyone that has been through it. I will be driving myself to and from treatments which will involove at least an hours drive or more probably for quite some time.

Would I do radiation and chemo again if I could? Absolutley! It saved my life twice now. I am truly blessed.

RE: Hyperbaric oxygen therapy

by Marmaduke on Tue Mar 20, 2018 03:13 PM

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Sewkenmore: I had hyperbaric treatments, 60 to be exact. I had to get plugs in my ears after the first couple “dives” as my ears were being adversely affected. I guess that is common. It was a long process and thankfully the Hospital where I went for them was just 30 minutes from my house. I was in the cylinder for two hours a pop. I really don’t think it helped me much at all. But I’m sure it helped pay for a new wing in the hospital. Lol. It was covered by my insurance thank goodness? It is very expensive. I guess I’ll never know if it did much good as I still have my feeding tube in. I am getting it removed in a couple days as I can now swallow most liquids and eat very small meals at times. I got it out in 4 treatments shy of my last radiation treatments. I had to be hospitalized because of extreme loss (60 lbs)and I was very weak. I’ve had the feeding tube for 2-1/2 years and am looking forward to getting it out, as you can imagine. I was diagnosed with HPV stage 4 BOT with Mets to a couple lymph nodes in May of ‘15. Been cancer free since. I tried getting my throat dialated with doctors telling me my throat was not blocked when the went in to look around. Did some speech therapy with little success. I have about 20% of my saliva so dry mouth continues to be a problem. Pain in my shoulder, jaw and back on radiation side and extreme fatigue still. I’ll be 70 this summer so I’m sure it depends on many things on how each one of us does. I see a dentist every three months and take very good care of my teeth using fluoride trays every night. Still have read that if you are going to lose your teeth, which many do, you will lose them between 12-44 months post radiation. My right side of my mouth is paralyzed somewhat so can only chew on left side. I’ve lost my voice to a low whisper. It’s still good to be alive with all this said. You really find out what you’re made of going through this horrible disease and the even more horrible treatment. They are coming up with better treatments every day to help patients recover better than those before them. Keep the faith, don’t be afraid to ask for help when you need it. Wishing you all the best in your recovery. God Bless, Donna

RE: Hyperbaric oxygen therapy

by sewkenmore on Tue Mar 20, 2018 03:47 PM

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Thank you so very much for your message Donna. This being my second round of Radiation really makes me wonder if we can fix this, but even if we don't I'm still here and will deal with whatever comes my way. I had years of pain in my neck and shoulders but that has eased off over the years. So far I just have pain in my jaw. What drives me a little buggy is the neuropathy in my hands and feet. Not too bad yet though. I take excellent care of my teeth and mouth. My daughter works in the dental field and made my trays for me and provides anything I need. Lucky to have excellent oral health. Being tired is a given in my life but I am up and moving and going for walks everyday when it's not raining.I worry about my ears. The feeding tube is wonderful right now. I wish I had gotten this when I was in treatment and didn't wait until I was six months out of treatment. But my swollewer works pretty good because of it. I worry about it getting weak, buit I am doing my exercises faithfully. I am only 58 and that is a hugh help. I am going to enjoy what I have (voice, swollowing) right now just in case it goes away. Life is good and I am blessed. Now if I could just put some weight on. two and a half weeks and still holding, but not gaining. Thanks again Donna and all the best to you too.

RE: Hyperbaric oxygen therapy

by Marmaduke on Tue Mar 20, 2018 11:01 PM

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Sewkenmore: I did not lose my voice until last Christmas just a little over two years post treatment. You are very fortunate, as you said, to have access to excellent dental care. Sorry you are going through this once again. Glad you are here to do it though. I’ve read where people are battling different types of cancer more than once or twice on here. God bless them. People tell me I’m one strong woman after hearing what I’ve been through. I say I’m not so strong, I am just one, of many, unfortunate enough to have gotten cancer. It is what it is and we have to deal with the hand we’re dealt. It gets easier every day as I adjust to my new normal. Good luck with your hyperbaric treatments and hope you get good results from them. Take care, Donna

RE: Hyperbaric oxygen therapy

by Loves2Fly on Tue Mar 20, 2018 11:16 PM

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My husband developed necrosis and did HBOT. It worked wonders! He did 60 "dives", about 2 hours per day, weekdays with weekends off. 

He had a large spot of dead tissue that would not heal. It caused a great deal of pain, and was spreading. The radiation scarring cut off blood supply to that area, so healing was impossible. He noticed improvement after about 15 "dives" and by 60, the area was completely healed and healthy tissue.  At his center, they could watch movies or listen to music. He did not like being locked in, and it caused some anxiety for him, so I drove and stayed there which (in his case) helped. 

It did not help with swallowing since that was a different issue, but it did heal, he has no pain, and he has not had any other necrosis issues in 3 years.

RE: Hyperbaric oxygen therapy

by sewkenmore on Tue Mar 20, 2018 11:38 PM

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Thanks Donna. You said you lost your voice. Did you get one of those, which I don't know much about, artificial voice boxes? 18 years ago as I remember, wait thank goodness I didn't remember, seemed to be a walk in the park compared to this time around. You have to be a strong woman to have gotten to where you are now. I love the saying " You never know how strong you ae until being strong is the only choice you have."  I looked at this when I was at some very low points and I tell you I did not feel strong. It really is true though. Sending nothing but goodness to you.

RE: Hyperbaric oxygen therapy

by sewkenmore on Tue Mar 20, 2018 11:51 PM

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That's wonderful and what I want to hear but keeping in mind that this may not work but that doesn't count me out on life. No matter what I celebrate the fact that I don't have cancer. It's effecting more in the area of the radiation treatment from 18 years ago, but is spreading a little bit towards the mouth as well. Right down by my swallower or on both side and spreading again now that I am off of the steroids and atibiotics. So very happy for your husband. I was told never to stop my swallowing exercises, especially the tongue one. We are also looking into Anemia which may be caused by damage frome radiation to my bone marrow. I will know more this next week. Thank you so very much for the hope. Hoping your husband get the swallowing worked out.

RE: Hyperbaric oxygen therapy

by Sdurnell on Thu Mar 22, 2018 07:06 AM

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Hi Donna!

I'm so glad to hear about your success with eating!  Best of luck to you on this front, and with eating from now on.  I pulled my own feeding tube out (with permission;  I'd pulled it out accidentally once before so knew how), and it was empowering to be back eating by mouth and have my love-hate relationship with the dang thing over.

Had another throat dilation (# 20 or so) yesterday, so have a sore throat for a couple of days, but that's OK.  Diagnosed with a hiatal hernia, so there's one more thing.  Sheesh!  

But as you say, upward and onward.  We just keep on keeping on, don't we?  Driving a car full (13) of cats across the state on Friday to get them to new forever homes.

Take care, and wishing you lots of ice cream!

Susan

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