Danny, In October 2010, five years after my XMRT, I developed trismus. Severe oropharyngeal dysphagia (aspiration had become a problem and I did have aspiration pneumonia) and ORN of my right mandible were diagnosed soon after. I had 60 HBO dives between October 2010 and Janury 2011 which appeared to stabilize the ORN. (Earlier in 2010 I had extensive dental work ~ fillings and crowns ~ due to cavities. Even with my fluoride my teeth turned bad. Dental work was a possible factor in the ORN.) I had a PEG placed in March 2011. In August 2011 fistulas developed on my right mandible and exited through the skin. I had an additional 30 HBO dives between December 2011 and February 2012. In March 2012 I had jaw debridement and removal of the titanium bar that had been placed in my 2005 surgery. Although I do have granualation tissue in the debridement surgery area, one fistula has not closed and I wear a gauze covering 24/7. My jaw continues to naturally debride. I can live with it. I continue to have heavy mucus and trismus, both contributing to difficulty with clear speech.

I wanted to share my post-radiation story with you because the medical issues that seem to suddenly arise are very distressing. Yet we do adapt. My husband and I continue to camp and travel. No more backpacking for me, but my creaky knees would have put a stop to that, post-radiation distress or not!

I second Anita ~ "congrats to you for being a long time survivor" and thriver. No reason to stop thriving and striving.

Christine, thank you for re-directing the thread. As I am trying to gain weight, I eat whatever I fancy, even chicken fried steaks!
Thank you Anita Frances and Zenda for responding. Although my dental oncologist has been keeping an eye on my mouth and dealing with suspected osteonecrosis for a long time, I still did not expect this cascading series of issues that have ensued since my sequestrectomy in February. Just as I was getting used to the hole in my gum and the HBO treatments,I got hit with the malaise which turned out to be my first bout with aspiration pneumonia, which led to the ear tubes, after I could no longer clear my ears in the chamber. Then came the poor vision and weakened voice, making me deaf, blind and not much of a public speaker. Little by little I am addressing these issues.
I was expecting to be told to get ready for the mandibulectomy, but for now another sequestrectomy is in my near future, although I would not be surprised if the bigger surgery still awaits me in the not too distant future.
I am not complaining. These last 9 years have been great...with all of my 3 kids graduating college and starting careers, my oldest daughter getting married, my return to work, re-marriage, followed by a lot of travel and golf, plenty of good times, and still being here for my 94 year old mother. In fact, I have lived mostly like other folks who did not have stage 4 cancer. But for my ubiquitous water bottle and a little throat clearing when eating, nothing much about me even revealed my condition. Now, as I approach 11 years from diagnosis and treatment, things are changing, and I will deal with it, much as many of you here have dealt with so much more than I have had to endure.
I applaud your courage.

Haven't posted for quite some time. My husband, now about 10 years out from treatment, is also facing a lot of issues. He is in the hospital right now with severe pneumonia - guessing it is under-treated aspiration pneumonia (this is his 3rd bout in the last few months). They are saying it is a fungal pneumonia - is that what others are seeing with their aspiration pneumonia?

He also had a prostatectomy last week - prostate cancer.

Thanks,
Anita

I have recently been posting under the After Treatment Forum about my husband's developing dental issues.

He is 5 years post chemoradiation (IMRT). One root canal was done, several years ago, and now more serious developments. Wisdom tooth and possibly another molar, on irradiated side, need extraction. He is being evaluated for HBOT. Are extractions ever successful under these circumstances, without developing ORN?

I have been angry that his wisdom teeth were not extracted prior to staring tx. I see from these posts that if it's not one thing, it's another. However, I think that on our forum for new patients, when we advise thyroid testing, dental exam, dental trays, etc., we should add dental exam by Dentist EXPERIENCED with ORAL CANCER.

Has anyone been advised to get a root canal prior to HBOT, even when the tooth will be extracted? One oral surgeon suggested this as a way to avoid the tooth possibly "blowing up" by delay from HBO and requiring an emergency extraction.

Bob's recovery, after the first year, has been better than I expected, but it sounds like I need to brace myself for continuing complications now.

Lottie

I had root canal pre and post radiation, and was told I didn't need HBO nor for any routine fillings. You do need them for extractions, after radiation to the mouth, jaw, above 45Gy, maybe less in some cases depending on health of these structures.

[quote=Anita210]Haven't posted for quite some time. My husband, now about 10 years out from treatment, is also facing a lot of issues. He is in the hospital right now with severe pneumonia - guessing it is under-treated aspiration pneumonia (this is his 3rd bout in the last few months). They are saying it is a fungal pneumonia - is that what others are seeing with their aspiration pneumonia?

He also had a prostatectomy last week - prostate cancer.

Thanks,
Anita [/quote]

Aspirating food or drink usually results in bacterial pneumonia. Fungal is typically inhaling thrush pooling in the back of the throat or when using a CPAP or BiPAP not keeping the mask or tubing cleaned every day. Also, things like mold or even oxygen and nebulizer canulas/masks not cleaned out after using can create fungal infections, especially in the lungs.

Ed

[quote=digtexas]Christine, thank you for re-directing the thread. As I am trying to gain weight, I eat whatever I fancy, even chicken fried steaks!
Thank you Anita Frances and Zenda for responding. Although my dental oncologist has been keeping an eye on my mouth and dealing with suspected osteonecrosis for a long time, I still did not expect this cascading series of issues that have ensued since my sequestrectomy in February. Just as I was getting used to the hole in my gum and the HBO treatments,I got hit with the malaise which turned out to be my first bout with aspiration pneumonia, which led to the ear tubes, after I could no longer clear my ears in the chamber. Then came the poor vision and weakened voice, making me deaf, blind and not much of a public speaker. Little by little I am addressing these issues.
I was expecting to be told to get ready for the mandibulectomy, but for now another sequestrectomy is in my near future, although I would not be surprised if the bigger surgery still awaits me in the not too distant future.
I am not complaining. These last 9 years have been great...with all of my 3 kids graduating college and starting careers, my oldest daughter getting married, my return to work, re-marriage, followed by a lot of travel and golf, plenty of good times, and still being here for my 94 year old mother. In fact, I have lived mostly like other folks who did not have stage 4 cancer. But for my ubiquitous water bottle and a little throat clearing when eating, nothing much about me even revealed my condition. Now, as I approach 11 years from diagnosis and treatment, things are changing, and I will deal with it, much as many of you here have dealt with so much more than I have had to endure.
I applaud your courage.
[/quote]

Well crap Danny. I am so sorry to hear all this. Haven't seen many posts since your 10 year anniversary. What an ordeal you have been faced with my friend. As we emerged on the other side of treatment I was amazed at all the things you were doing. To hear all this just breaks my heart.

I went through a downturn around the 5th year. Total muscle wasting. I lost about 96 lbs and am now battling nerve and muscle issues along with fibrosis of my left long. All of it is from the radiation as well. I am on a ventilator at night and now it seems I am moving towards using it off and on during the day. They wrote me off long ago and told me to go home and die. I hate what you are dealing with. There has to be more done to figure out how much radiation is more than the body can handle or how to flush it out after it has done it's job. P

Good luck and best wishes you can tackle each issue through resolution.

I am planning on being in Houston for the October 12 walk if you are up to visitors. I plan on being there from October 10-October 19. Hang in there.

Ed

Lottie,

Don't look at my sig...I may not be the right person to comfort your fears if you know what I mean. When I went through treatment the back teeth removal was almost automatic. After that the pendulum swung back to no teeth removed and I was evaluated by an oral cancer surgeon that did all the pre-treatment exams for a major cancer center in Dallas. My dentist since 2007 only works with oral cancer survivors. I believe I had the best possible care but my teeth have been crumbling, shipping, cracking, breaking since about year 4. I am a couple weeks from my 10 year anniversary of finishing treatment.

Don't get too far ahead with all this. Enjoy every day and work on immediate issues. As fast as things pop up, they can also just stop. Last year at this time my digestive system quit functioning and I could not swallow water even. I was out under hospice care and was told weekly for months I would die any day. It just didn't feel like it to me so I plugged on. This summer I worked up to biking 2 1/2 hrs 3 times a week, working out in the gym and saw muscles regenerating. I went from barely able to lift 10 lbs to benching 170, 210 leg presses, 90 on pec flies and curling 75. Then in the past 2 weeks things are going the other way again.

The past 8 months have been incredible for me. If I had given up, I would not have made it to Christmas. I was at 115 last September and 160 in September this year. Back down some now but hitting every issue that rears it's ugly head. I resumed teaching ESL classes at our church last week after 3 years off and today I will spend 4 hrs parking cars for the balloon festival.

Never get ahead of the battle. The mind takes us places that may not happen. I know it sounds cliche but every moment worrying will never come back. Never give up!

Ed

Thank you Ed,

Believe it or not, after I posted today, I started thinking along the lines that you are verbalizing. If I let anxiety overtake me ahead of time, I'll ruin the good life we do have left.

I can be very strong and realistic once a plan is in place. When I'm uncertain about the best course of action, I panic.

It does help me to know, that even with the best dental care, this can happen. I'm sad for you, my husband, and others who have to face this, but it helps me to know that it might not be due to an oversight on my part in not seeking out more "experts".

Wishing the best for you,
Lottie

Lottie,

Really...there is no rhyme or reason to this dreaded disease. Any decisions made to this point can't be reversed either. Best wishes for some stretches of normalcy.

Ed