Previous Thread
Next Thread
Print Thread
Page 1 of 9 1 2 3 4 5 6 7 8 9
#61887 10-02-2007 02:29 PM
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
I posted several days ago under the General Board regarding the importance of dental screening prior to radiation Tx. It seems that no such screening was done in my case early last year and now I am facing issues because of it. I have now learned that I will have to endure 20 2 hour rounds of hyperbaric oxygen treatment prior to the extraction of a lower right side wisdom tooth. I will then have to have 10 such treatments following the extraction, all of this as a guard against ORN.

The facility here in Atlanta where I am to have the treatments only has the individual hyperbaric chambers which I had a look at last week when I had the consult. I am hoping to be able to tolerate the close quarters of the units and would like to hear from anyone else who has had to have HBO treatments. I understand that the treatments do not guarantee against ORN but does anyone know to what degree the treatments improve the chances?

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#61888 10-05-2007 01:40 PM
Joined: Aug 2006
Posts: 15
Member
Offline
Member

Joined: Aug 2006
Posts: 15
Bill

I go next week for my consultation for HBO treatments. Prior to my rad and chemo I went to an oral surgeon who pulled three back teeth on the right hand side. These were all the teeth he recommended pulling. Now I am having problems with other teeth and dentist is suggesting pulling more teeth, thus the HBO. Since you will be ahead of me slightly, and my treatments will also be in Atlanta, lets stay in touch with each other as we go through this process.

Good Luck and God Bless,
Judy


BOT SCC Stage III DX August 14, 2006. Radiation and Chemo completed January, 2007. No surgery. "When you have exhausted all possibilities remember this-----You Haven't"
#61889 10-05-2007 03:11 PM
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2007
Posts: 580
Hi,
Here are a few sites that can give you some info on HBO treatment. I have been involved in cases where I have done extractions post H&N radiation therapy where it has been used and cases where the patient was just placed on antibiotics. I follow the suggestions of the RO on a case by case basis. Some researchers say that the icidence of ORN can be reduced from 27% to <6% with HBO treatments prior to dental extraction, others don't support this data due to the fact that the sample size for the studies were small, there were some proprietory influences in some studies, and the studies were not double blind.
Talk to your RO's and ask their opinion.

Brian, Gary and Dileep do you wonderful gentleman have any thoughts or information to add here.

http://www.nhshealthquality.org/nhsqis/files/EN15_HBOT_Revision.pdf

http://www.cda-adc.ca/jcda/vol-67/issue-7/384.html

https://www.fhshealth.org/services/OsteoradPressurePoint.pdf

http://www.oralcancerfoundation.org/dental/hyperbaric.htm

I hope this is useful.

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#61890 10-05-2007 04:25 PM
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Trying to imagine how you could possibly have a double-blind study on the efficacy of HBO therapy....... confused


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#61891 10-05-2007 04:28 PM
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2007
Posts: 580
Nelie,

I know, I'm just passing along the info. Shoot me if you want but that's the opinion of the nay sayers. It's not for me to agree or disagree.
I would just like someone to say, "Yes, HBO, it works, do it."

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
#61892 10-06-2007 04:37 AM
Joined: Feb 2004
Posts: 36
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2004
Posts: 36
Hi, My husband needed all of his teeth pulled 9 months after treatment as the radiation weakened them and they were breaking. He needed HBO. Not only did he not have any complicatons with ORN but his healing from radiation and chemo treatment seemed to improve greatly. I believe that the oxygen helped to heal all the affected tissues.
Eileen

#61893 10-06-2007 02:13 PM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Mike, HBO works! Five years after I had it, I could not be healthier, or happier with the results. A side effect is often temporarily changed vision. In my case, the change has been permanent and I no longer need glasses. I had the sharp knives, evil death rays, and poisons, and this treatment was a piece of cake -- no pain, and revascularizaiton of the jaw so titanium implants could be placed and stay firmly placed. I am a true believer for sure!

#61894 10-20-2007 06:53 AM
Joined: Jan 2007
Posts: 346
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jan 2007
Posts: 346
Just a word,
I talked to my ent yesterday about possible HBO treatments after pulling my tooth. He wants to play wait and see with this tooth and infection because he says cancer cells love oxygen. Their could be microscopic latent cells that would really benefit from the oxygen treatments. It made me think- - caution.
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
#61895 10-22-2007 04:47 PM
Joined: Sep 2006
Posts: 75
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Sep 2006
Posts: 75
I had 45 treatments gave me 30 then pulled 26 teeth then I did 10 more after. I was told I healed fast because of it. The only bad thing I found was the drive there and back. The treatment was fun compared to the other stuff.


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
#61896 10-22-2007 05:10 PM
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Debbie,

I heard the same thing about Cancer cells loving oxygen. I also heard it about sugar. I talked at length before I did my first HBO sessions with many health care professionals and ALL stated that there is not one ounce of proof that supports this theory. And you know what, if there are cancer cells in your mouth............they're going to come out of hiding whether you have HBO or not, right?
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#61897 10-23-2007 04:15 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
One of the interesting things about talking here is the difference in treatments. John's Oncologist [trained at MD Anderson] said NO to HBO for him when bone shards started presenting a problem because cancer cells were still present and it would exerbate their growth. Does anyone know for sure what the protocol is? Amy on the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#61898 10-23-2007 04:24 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
HBO is common and highly recommended by everyone that I have ever talked to. It speeds healing in a big way in radiated tissues.

Just a off hand comment on where people train. Every doctor has trained at some major cancer center, you can't get into practice without doing your time as an intern, etc. The question would be - since cancer treatments are constantly evolving, did he train there 6 months ago or 6 years ago? Everything changes in the research and treatment world so fast, that training at a particular institution means nada..... unless it was yesterday.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#61899 10-23-2007 04:30 PM
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
That being said, Brian - it doesn't answer the question that HBO can\will exacerbate the growth of cancer cells if they are present. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#61900 10-24-2007 08:40 AM
Joined: Sep 2006
Posts: 75
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Sep 2006
Posts: 75
Rochester Mayo In Minnesota has just put in HBO,chamber with high alitude chamber as well, after many years of debate, the old doctors seemed to say no the new doctors say yes.
When I was there there was a number of us with radiation damage to the teeth. Also helps open wounds. The only side affect I had was eye site went wacky but did come back. I also have a freind of mine 14 years survivor Had HBO 10 years ago. Same place I went. I think if there is a live cell in you after radiation, it will come back in time.


Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
#61901 10-24-2007 11:41 AM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
HBO treatments are FDA approved for the treatment of osteoradionecrosis. Of course this only occurs in radiated patients who have had cancer. It is also a protocol used by the NCI CCC's for complications of healing related to treatment.

Not every doctor out there is up to speed on everything. This is not possible since science changes daily. What we believed a year ago or 10 years ago, isn't necessarily true today in the course of treatments, complications and so much more.

Lastly, it is physically impossible to know if you have a cancer cell, or even a group of 100 of them active in your body. For that matter we all have cells that are going over to the dark side every day, and are being caught by our immune systems and destroyed. If you have an immortalized malignant cell left in your body, it is invulnerable to your immune system and over a period of time it will spin off daughter cells that share its malignant and immortalized nature. Eventually they will have a nice little colony of thousands of their own organized (tumor) and they will instruct your body to begin angiogenesis, which will create new blood vessels to bring them all the new blood supply they can take. That blood supply will of course be full of all the nutrients that our cells - malignant or not - need to live, oxygen being a core member of the family. Additional 02 isn't going to change this process a bit


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#61902 11-08-2007 06:57 AM
Joined: May 2007
Posts: 1
Member
Offline
Member

Joined: May 2007
Posts: 1
About three weeks out from hyperbaric treatment and I have seen improvrements to my throat damage from my rad. treatment. Still can't eat because of not being able to swallow but the pain that has been in that area has decreased. Dr. went in two weeks ago and said that the raw friable tissue seems much better. Not spitting up blood and my teeth feel better.
Had 40 dives and lost my distance vision but it is slowly returning. Had to tubes puy in my ears because of the pressure but did well after. HBO doctor says that the blood flow increased from about 15 to 20% to 80 to 85% of pre rad.

David55


Tumor found 2-24-06,Bx 3-2-06
SCC R)BOT-T4N2C 7 wks of IMRT-ended
5-8-06,7 weeks chemo-carbo & taxil weekly ended 5/1/06. Trach out 5/30/06. Still have PEG.
#61903 11-08-2007 01:59 PM
Joined: Jan 2007
Posts: 346
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jan 2007
Posts: 346
Hello,
Saw another dentist today who is referring me to a specialist. It seems I will def have to have some kind of reconstructive surgery again. I do not want to, I want tostabilize what I have. I am so frustrated. Still I have this tooth no one wants to touch because of cancer and radiation and who knows what else. I said to please send me to someone. He maybe will send me to Duke and they keep mentioning some dental guru in Florida. It is nice to know about the Hbo> NOT only will my originial doctors not refer me to anyone but they downplay the hbo as cancer causing. Thanks to Brian, I do see now that my doc has been in practice quite a long time. Very highly recommended but of the old school. So HBO is not the bad quy I thought. Boy, you have to find your way out of this maze sometimes by yourself and with friends(you guys) but not with the help of doctors!


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Does anyone who posted have any updates on going thru HBO treatments? A few posts said they were about to begin treatment. I was told by my dentist and ENT HBO is something I will need to do before any major dental work.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 214
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Jun 2007
Posts: 214
I was wondering about the latest on HBO, too. I am most likely having a thyroidectomy in the next couple of months. My ENT said he would not undergo the surgery without HBO. When I asked my oncologist, he said they rarely prescribe HBO, and they are not certain it does any good.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
I am supposed to have HBO starting next week. That is, if the insurance company stops dancing around and makes a decision...... IF and WHEN this actually starts I will provide an update.

Markus



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Thanks for responding. I would like to know how often it is done if its daily or weekly. What it feels like. I already read about the side effects, but to me it sounds like the benefits far outweigh the temporary side effects.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Christine,
I think Minnie had HBO. I haven't had it, but it is done daily, 5 days a week, for usually 30 treatments. It can effect the eyesight, usually only temporarily. If you do a serch on it, you should find some old posts from people that had it.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
yes to the above.
Also, this is not something that is over in a couple of minutes. Typically this takes 2h+ in the chamber (depending on the pressure). Add to this travel time and preparation and half your day is gone for the next 6 weeks or so. If they do HBO in prep for surgery you might get HBO before and after surgery.
I cannot tell you what is feels like. The chamber I have seen is transparent (plexiglass) and looked quite roomy, but if you are claustrophobic you should address that beforehand. You can listen to music watch TV, you will not be able to read a book. I plan to sleep if my HBO is approved.....

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Thanks for the info Eileen and Markus. Markus, please keep me posted on your progress with this. I wish you the best of luck with it. It doesnt sound as bad as the radiation. Being pinned to the table under the mask sure got old really fast. A clear chamber is much better than what I call "the tube" (pet/cat scan or mri). Im sure glad Im not claustrophobic.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Christine,
now I have done 3 of these things. The novelty has worn off. It takes about 3h (2.5h in the tube) and then there is the travel time. So half your day is shot.
It is however not a big deal at all. It feels like diving actually. (minus the water an all the interesting stuff). Basically what you have to do is equalize your ears until the pressure is stable. I find myself doing that a lot more than when you actually dive. Once you are at pressure you just wait and watch TV or sleep. (no books allowed, they are flammable). I have started to catch up on my sleep, although a bed is a lot more comfortable it can be done. They WILL wake you up 2 times for an "air" break. During this break you breath regular air as opposed to pure oxygen. So far I have not detected any vision changes.
There really is nothing to this... if anything you are more rested afterwards.

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

Markus:

Thank you very much for the info. It sounds like its a peice of cake compared to the other treatments we both have gone thru. From the info I have read, most people overall heal up much quicker with these treatments. Im all for getting rest, I dont sleep well at night. Thank you very much for the update.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Well
I am now on dive 12 or so. I had problem once with pressure equalizing going down, other than that no issues at all. At this point I am sleeping in the chamber, and, yes they wake you up for air breaks. Is it working? The one thing I have noticed is that my gums do not bleed anymore and I can use the toothbrush more vigorously. Also, I have a lot more energy these days. It is not clear whether this is due to the treatment, the sleep I get in the mornings or the other stuff that I am doing now (supplements).

Markus





Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Markus:

Thank you for the updates. Im glad to hear its going very well for you. It sounds like its working for you, which is good news. Having more energy must be great!!! Do you have any vision side effects, or any problems with hearing? Do you notice any difference with eating or how far your jaw can open? I will be putting my dives off til fall. I got shocked today with the estimate for my dental work. Even with insurance its several thousand. I sure cant afford that working only part time.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Christine,
So far no problems with hearing or vision at all. Generally after O2 treatments the diastolic pressure is increased.... not for me, probably because I am sleeping and am not freaked out by it (the chamber). Eating.... there has not really been a change. I can do pizza but still have problems with spicy stuff. No wine, but I can handle an occasional guinness. Jaw opening/trismus: I had full range motion before already..... not that I was told to watch out for this by my RO. I paid attention to it because of this board. I am starting to gain weight, so sooner or later, I will probably have to reconsider my whip cream "supplements".
I have not gone to the dentist... but I expect some work too, after the O2 treatment is over..

PS after spending mornings in the "can" I gave classes (lectures) today from 1-3 and 5:30 to 6:45. I still have some issues with pronunciation of sharp s' and rolling r's. Right now I pretty much feel like: I am back!!

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Yes, I did have Hyperbaric treatment, three times to be exact. Each time I did 30 "dives". I would do 20, go have my procedure done, and then go back and do 10 more after the procedure. I got so I'd sleep in the tank, no worries at all. My eyesight did change each time but returned to normal quickly. The treatments are relatively easy and worth it, in my opinion.

Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
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
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
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




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jul 2007
Posts: 11
Member
Offline
Member

Joined: Jul 2007
Posts: 11
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

Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
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




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Since opening the board we have never had an O2 treatment patient have a mask delivery system post on these boards.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Jul 2007
Posts: 11
Member
Offline
Member

Joined: Jul 2007
Posts: 11
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

Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

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.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
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



Last edited by Markus; 03-29-2008 05:43 AM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
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.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Jul 2007
Posts: 11
Member
Offline
Member

Joined: Jul 2007
Posts: 11
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

Joined: Jan 2005
Posts: 94
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Jan 2005
Posts: 94
Bonnie, I am sorry to hear about your experience in the multi-person tank. My experience at Virginia Mason in Seattle was very different.

They have a newer, larger facility now, but the tank I was in had room for six. One was a nurse, paramedic, or other trained staff member. We wore masks, but they were very light weight. The entire tank was filled with pressurized air, O2 was delivered through the mask to minimize fire hazard.

I am very claustrophobic, so a one-person chamber wouldn't have worked for me. As it was, the room was big enough because we all joked, played cards, shared war stories, etc. Yes, it took 2 hours a day for 35 days... but the results were amazing.

I'd had six surgeries trying to close a fistula, essentially an opening through my cheek that just wouldn't heal. Five weeks into the HBO I had surgery #7. The fistula healed, done deal.

Also, I had awful dry mouth and couldn't enjoy food, even though I had reached a point where I was able to eat. After the HBO, my remaining salivary glands kicked into gear. My taste buds came back. Heaven!

Yes, my eyesight changed permanently. I'd had Lasik, now I wear glasses. Fair trade for the taste buds and salivary glands. And my tongue turned a healthy pink... and my gums looked normal again.

Yes, the half-day thing was a hassle. I had to drive 20 minutes, take a 35 minute ferry ride, climb 16 blocks from the waterfront to Capitol Hill (my choice), wait for the dive time, play 2 hours of pinochle/rummy/whatever, climb down the hill and make my way home. OK, more than half a day. But I looked for the upside, used the opportunity to get fit, read, meet some fellow travelers, heal.

My last HBO treatment was in 11/04. The results for me were very fast (if you call 7 weeks fast) and very positive. My only regret is that I had to move to Washington from California to get HBO. My docs at UC Irvine didn't have a tank, so they didn't have HBO docs beating them over the head to send them patients, showing them the data, talking up the results. I might have avoided 6 surgeries and recovered a lot faster if I'd started the HBO a year earlier.

Ken
Live strong. Laugh often.

Last edited by R Kenneth; 04-07-2008 06:30 AM.

SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Markus:

Hows the HBO going?



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Well !!
the oxygene treatment is over. In summary: although this was getting to be a nuisance as far a time was concerned it was otherwise not difficult at all quite contrary is was a breeze compared to everything else. I wished I had done this much earlier however!
Over all my mouth feels a lot more "normal" and has healed much better (there was an area/seam that was problematic). There is no more bleeding when I brush my teeth. Some of this may simply be due to the time this took..... it is difficult to put you finger on it. Nevertheless, I feel it was worth it. It does however "rob" you of a half a day for 6 weeks.
I developed the following routine: Stay up until very late and do whatever work/play then sleep for 4-5h get up and drive to the facility. Have a dive for 2.5h and sleep! They will wake you up 2 times, most annoying. Then get up again and go to work until late ..... and repeat 30 times or so.
This turned out to be extremely relaxing I was one of the few people who had a lower BP AFTER the treatment.
Also, I never had any issues with vision changes.

Markus



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Glad to hear this is over and you can return to your "normal" life. Next time dive with the traditional water surround venue, it's much more rewarding.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Oct 2004
Posts: 30
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Oct 2004
Posts: 30
My husband had them--in the big "tank" with others. They can probably give you something for that claustophobic feeling if needed; my husband had to have Ativan when he did his radiation treatments in the "mask." The h. treatments did help. Healing was a long time coming but he is fine now.

Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7


Markus:

Thank you very much for you info on the HBO treatments. Im glad to hear its finished for you. Prior to the HBO dives did you have any problems at all with your jaws? If you did, has it improved?

Since my surgery, my jaw has trismus so bad, it hurts everyday. Im seeing my oral surgeon next week who is the one to set up my HBO treatments. Im hoping for a miracle, that he can either fix my jaw or the HBO will.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Christine,
I was put on HBO relatively late. I had a yeast infection at a seam/pocket from the part. glossectomy. Ie. something that was not healing well and I also had bleeding gums.
I did not have problems with trismus. After HBO there is no more bleeding and everything is nicely healed up. I just had a checkup with the RO on Friday, our next "date" is in half a year.

HBO is supposed to stimulate healing and the formation of new blood vessels. The will supply the tissue (and bone) with needed oxygene. (The x rays are very good at killing your capillaries and the danger is that tissue becomes necrotic).
I do not know how HBO will help with trismus, healing and rebuilding blood vessels may help... what does your surgeon say?

Best

Markus




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7


Markus:

Unfortunately HBO wont work as I had hoped. Im always searching for a miracle cure which doesnt exist. For now I must first heal up from my surgery and do physical therapy for trismus. Then I will be able to do the HBO before my extensive dental work. I appreciate your help. Best of luck with your continued progress.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
HBO treatments did nothing for me as well. I did 20 dives prior to wisdom tooth extraction followed by 10 and developed ORN and Trismus as well. This has been going on now for 5 months. I will be seeing my Oral Surgeon next week to find out the next planned activity/surgery. I can only open my mouth 5mm at the present time. The ORN is my biggest concern as I had earlier surgery for it in one area but there now is more.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

Today I did my first HBO dive, my fingers are crossed it will help me.

After I had such a difficult time recovering from surgery in April, I finally went to my family doc who suggested HBO. I was very surprised he recommended it. My family doc thinks it will help me to heal up and also with alot of other health issues.
I may end up doing it again down the road for my dental issues, but for now Im not concerned with that.

To anyone who has done HBO......
Did you ears crackle when coming up from the dive?

I know hearing and vision problems are something to watch for, so I am curious. Thanks to you guys, I impressed the tech with my knowledge of HBO.






Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Christine,
yes you may get a funny sensation in the ear when you are "surfacing". You should be able to avoid or minimize this by simply swallowing or moving your jaw from side to side. The idea is to equalize the pressure. You have to ensure that you equalize the pressure when you dive, otherwise this may really hurt! An antidecongestant may help.

I personally did not have issues with vision.

Best
M




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

Markus:

Thanks for your response. I was hoping you would be on tonight to advise me.

Christine


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Christine, I hope the HBO therapy helps you heal up from your most recent surgery. Will you be having dental work at the end of it? I may still need it myself at some point, so will be interested in hearing about your experience.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Jan 2005
Posts: 94
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Jan 2005
Posts: 94
Christine,

Good for you. Yes, a bit of ear crackling from time to time... and after a few dives, I started feeling a bit tired on the way home. Not too tired, but not perky either.

How did you do with the helmet? Mine was really light.

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7


Nelie...no dental work being considered at this time

Ken.....helmets? Im not sure what you mean, I go into a glass tank which is about 4 ft diameter around and about 8 ft long.

Markus....today my ears still have the crackle sound, Im taking some cold medicine before I go.


Christine


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Christine,
this (treatment) will seem to go forever. I found it supremely boring but managed to catch up on my sleep.
It looks like you are in the same type of device as I was. I sometimes had problems going down (HBO speak for increased pressure!!!!), similar to what you get when you dive and do not equalize the pressure frequently enough. Surfacing was never an issue, there the pressure equalization happened automatically (bubbling sensation). You could always swallow to effect a pressure equalization.
Basically the problem arises when you have a portion in your body that contains an air space (lung and ear). The lung you equalize by simply breathing and on the ear you may have to work a bit.
(there are other funny thing that may happen with trapped air such as in teeth fillings)
Sometimes they place tubes in you ears to keep the passage (eustachian tubes) open.

re dental work.... I may have to have some and will let you know how that works out.

Best

M





Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Mar 2008
Posts: 404
Likes: 2
"OCF Down Under"
Platinum Member (300+ posts)
Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
Posts: 404
Likes: 2


I had 30 "dives" Hyperbaric treatments earlier this year prior to more surgery in April for Osteroradionecrosis where they removed nearly all of my bottom teeth and replaced my lower jaw with bone from my hip.

The surgeons believe that my "new jaw" and the area where my neck was dissected again is healing alot quicker due to the HBO and that having the HBO will also be a huge advantage to me when I can get teeth implants early next year.

Besides short term blurred vision from the HBO I had no other side effects.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
An update on my HBO treatments.

After 10 dives, I can say I feel the difference already. My jaw no longer hurts. The fatigue had been really bad, now I have some energy. Not quite what it was before cancer but its much better. I still have 20 more to go so I feel very hopeful that I will feel even better when its finished.

Christine


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
That's great, Christine. Especially that you don't have jaw pain anymore.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Christine,

I'm so happy to hear that you are feeling better. It's great that the jaw pain is gone.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Hi All, I had a second primary (soft palate) back in November, first time was tongue cancer in 2002. Now I am having lots of problems with my teeth, I had 7 weeks of radiation first time, I have an abscessed tooth that is not healing and the abscess is quite large. The endo dentist has given me two rounds of medicine directly into tooth, today he said he will make a decision about the root canal next Wed. Okay, my question is, has anyone else experienced this and had to have a tooth pulled or did HBO help out with this problem....Thanks!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

Carol:

HBO will help you to heal much faster. After going thru cancer treatments, you body cant heal as it used to. Thats probably why you are having problems with your tooth.

My dentist and HBO doc both said for dental work 20 dives before and 10 after the dental work is the norm. Ive been doing HBO to fix my sore jaw, which it has.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7

Ive completed 42 HBO dives with 8 more to go. Ive been having some trouble clearing my ears. The problem is especially my left ear, which is also the side my cancer and radiation tx was on. I do have sinus problems and take prescription nose spray Advil cold and sinus for the congestion. This is probably due to the radiation as I dont have a cold or allergies and this has lasted now 6 weeks, last time my sinuses bothered me for 5 months. I couldnt dive about 7 times due to not being able to clear my left ear. Has this happened to anybody else? Any suggestions?


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
I recently completed 45 HBO treatments. I had trouble clearing my ears at first, but my ENT put me on prescription nasal spray twice daily. Also used Afrin spray about one hour before treatment. He also suggested �tubes� if I continued to have problems clearing my ears. Fortunately I didn�t need them.

I found out a few years ago that I have allergies with were causing my frequent sinus infections. Started on allergy medication and since then I haven�t had any sinus infections. The sinus infections were the only sign that I had allergies � I did not have the typical sneezing, running/itchy eyes, etc., so never thought I had allergies. I also kept our air conditioning on to minimize my exposure to the pollen, which did cause some congestion.

I also did the �ear clearing� techniques for the entire time on the dive down, and most of the time on the dive up. When I had problems with my ears, they would take me back up a little, and then take me back down but at a slower rate.

You�re near the finish line! Good luck getting through the remaining HBO treatments.



Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I'm a Certified Scuba Instructor and my wax build up is so productive that before every dive of a depth greater than 50 feet I visit my doctor who cleans out my ears. Since I started that practice 20 years ago my clearing problems are over. Perhaps you might want your ears examined for wax build up?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7


I had my ears cleaned by my doc last week and still continue to struggle sometimes while going down. I do use prescription nasal spray and advil cold and sinus for congestion. I only have a few to go and want to finish and move on. I am starting to be concerned because its the ear on my radiation side and also thats where my sheech therapist and physical therapist work on.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Clearly, you do not want your ear plugged up with wax.
But this is not the problem (nor is it normally when you have ear problems while scuba diving). It is the eustachian tube (connecting the middle ear to the pharynx). This is not accessible from the ear unless you ear drum is ruptured.

If the eustachian tube is closed and remains closed you cannot equalize the pressure and there is the problem. You are on decongestants and you are doing the equalization tricks swallowing, wiggling your chin and holding your nose and mouth closed and buld up pressure (i.e. exhale). If none of that works then it might be time to go for the tube solution mentioned above.... although it is pretty late in the game for this. I assume that it is not a big procedure, some HBO centers require this for all patients.

Best

Markus






Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
20 years ago an ENT that I taught to scuba dive was the one that examined me and told me to have my ears cleaned out due to excessive wax build up before I dove any substantial depth. It worked for me then and every time since and perhaps it's a coincidence but the possibility that I was given bad advice ticks me off because sometimes it was a real inconvenience to get my ears done before a dive. UGH


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Jan 2008
Posts: 706
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2008
Posts: 706
Could there possibly be scar tissue from the rads? I don't know if this happens in the ear but I'm sure it sustained damage from the rays and I know Cisplatin can cause damage.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
David,
it is a matter of plumbing! Joke aside.
You cannot equalize pressure through your ear canal no matter how clean it is (as long as the ear drum is intact). IF the ear canal totally plugged that may be a problem too (different story).

M

Last edited by Markus; 09-11-2008 03:52 PM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Thanks for your answer, Christine....Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
Regarding HBO treatments I have a question of others who have undergone them. I did a total of 40 dives with the first of which were done last October. I did 20 initially then followed with 10 after dental procedure. I was then prescribed 10 more later due to continued problems this past Spring. The greatest side effect I had and still have is vision problems. Prior to any dives I had perfect distance vision but had to use the "readers" at 2.50 strength. HBO gave me an odd visual reaction as I now only need "readers" of 1.25 strength and sometimes none at all but my distance vision is blurred/fuzzy. The Doc I dealt with at the HBO center told me that the visual changes would only be temporary and I should return to normal in every way after about 6 to 8 weeks following my last dive. Well, that was now 6 months ago and nothing has changed. I have held off on getting an eye exam with needed glasses as I am afraid that if I do that my vision is still going to change back. It will then be a waste of time and money to get glasses if the vision does eventually change back to pre-HBO treatment condition.

Has anyone else experienced what is starting to appear as permanent visual changes as opposed to temporary changes?

Thanks,

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
I just finished 45 dives, and had blurred/fuzzy distance vision that lasted for about 2 weeks after treatment. The doctor that treated me said vision changes are sometimes permanent, but that is rare. To me 6 months seems to be a rare, permanent change. Have you contacted the doctor that treated you for advice?


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Mar 2008
Posts: 404
Likes: 2
"OCF Down Under"
Platinum Member (300+ posts)
Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
Posts: 404
Likes: 2
Hi Bill

I had 30 dives earlier this year and also encountered the same problems with blurred vision and was also advised that the problem would PROBABLY be temporary. Five months on my vision had not improved and I had to get my lenses upgraded.

I did contact the Dr at the HBO facility and he said that usually they do return to norm, but they should have done so by about 12 weeks after the final HBO treatment.

He also mentioned that HBO treatments have been known to cause cataracts in some patients.

Karen

Last edited by Karen Rose; 09-18-2008 01:18 AM.

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7


I will ask my HBO doc about this. My vision is a little off, nothing to complain about at all. Just distance isnt as clear as it had been.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Aug 2006
Posts: 294
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 294
Following my post of 9/17 on the vision topic I spoke with the Doc yesterday who oversaw my case while doing HBO. He says that since my vision is still not back to what it was pre-HBO after all of these months it has probably been changed permanently. He is also recommending that I go ahead and get with an Opthamologist as the next step. He also said that it was rare that the HBO resulted in permanent changes.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Hi All, other than the vision changes, did HBO help with infection and teeth issues or whatever you were having HBO for? I just finished my 6th dive today,I go to 20, then my oral surgeon will check me, to determine whether he can pull the infected tooth, I believe I will have 10 more treatments after that.....just hoping the HBO helps the infection! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Carol

Thats usually the norm for HBO. 20 dives before your procedure then 10 after. There are all kinds of facts/studies about HBO curing all kinds of things. Its an interesting subject with what it can do. Ive gone for about 45 or so dives with a total of 70 scheduled.

My issues arent just dental work. HBO has been what I credit to helping me to recover from 2 rounds of OC in less than 1 year. Without a caregiver, I suffered more than alot of patients did and got 3 hospital stays as an added bonus for dehydration/infections/malnutrition. Physically I was so weak, I was anemic with very low blood pressure and a constant severe jaw pain. I now have energy, my jaw doesnt hurt at all it has helped my arthritis in my back and my anemia is gone.
It has helped me with the painful physical therapy for trismus and I cant say enough good things about it.

Others may disagree, and thats ok. Im the biggest non-believer there is about anything but the standard medical routines. This has worked wonders for me.

Besty of luck with your treatments.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Thank you Christine for your reply, so happy to hear your good results.....where are you having yours done? Thanks, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: Apr 2007
Posts: 794
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Apr 2007
Posts: 794
My mom has had over 30 HBO tx's, she looks and feels good. I can't get over how much good it has done for her skin in her neck area, she had such severe scarring from her tx's. She has to take sudafed before going each time because of the pressure she feels.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Joined: Jan 2004
Posts: 1,116
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2004
Posts: 1,116
Thanks Donna, that is good news.....I have lots of scarring in my neck area too. I will just be so happy if it helps with the tooth situation.....I am doing 20 first, then seeing my oral surgeon....then 10 more.....if all goes well....Thanks for writing back! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Joined: May 2007
Posts: 622
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 622
I am getting ready to do the standard 20 before 10 after HBO protocol, my question (especially here at the holidays) how many days do they typically let you take off in between dives, especially the ones before.


I managed to fracture a tooth at some point on the opposite side of where my tumor was...

And a bit of humor, my PET scan is scheduled on the same day as my 8th anniversary of finishing IMRT. smile


Kevin

Last edited by Kevin - Memphis; 12-01-2014 01:48 PM.

18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Saturday, Sunday, and some holidays. I would say Christmas, NYD. Any days missed are added on, as was my experience. I'm currently halfway through my last 10, due to surgical tooth extractions last month, and did 30 in 2011 also. I hate everyday lol.

Good luck with HBOT, and PET scan!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
I had some issues with being able to clear my ears so always had to have tubes put in. Getting tubes is a very minor surgery (at least to me it is). Some docs will even do the procedure right in their office. The tubes usually fall out on their own.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2007
Posts: 622
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 622
Thanks y'all !!!

I just had a tube placed in my right ear Christine. He did it in the office, took 10 minutes. The right side is what got blasted and left me with some Eustachian tube weirdness. Not a big deal at all, the deadening drops were the worst part of it. smile

While I was there, I got a hearing test, my first in 40 years, I was impressed and pleased. I can still hear out to 10k (maybe farther, that's where the test cut off). Just have a dip about 3k due to the tinnitus.


18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking
Page 1 of 9 1 2 3 4 5 6 7 8 9

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5