Friends,
I have not been active on the board in recent years, just checking in from time to time, as after a couple of years, life returned to relatively normal for me, and I moved forward, enjoying life without cancer, and not particularly bothered by annoying limitations like dry mouth and the inability to eat spicy foods.
The good news is that cancer has not recurred (for which I am very grateful), but the bad news, as I approach the 11th anniversary of diagnosis and treatment, is that I am having to deal with osteonecrosis and aspiration issues. I am told that the effects of all that radiation grows worse, not better over time and I have communicated with a few other long term survivors who are dealing with similar issues.
My dentist and my dental oncologist at MDACC had been , for some time, watching a molar of mine that was separating from the bone. It was eventually decided to cut the tooth off at the crown and to let it come out on its own. That occurred, but the skin did not grow back over the hole leading to osteonecrosis. Next strategy was trying drugs to enhance blood flow, which did not work. Then in Feb. Dental onc. performed surgery (sequestrectomy ) to remove dead bone. He found a little more than was visible. I then started a series of hyperbaric oxygen treatments, eventually completing 40 recently. There has been some progress in the growth of tissue, but still not enough to cover the opening to the bone.
During the time that I was completing the HBO treatments, in March, I became very sick with a malaise that I assumed was flu. I had chills and sweats, lost weight and appetite and felt like hell. Now, after a swallow study plus a trip to the pulmonogist and a CT scan it looks like the problem was aspiration, or aspiration pneumonia.
I am scheduled for another sequestrectomy later in the month, which is actually good news, as I was prepared for the surgeon to tell me that he was going to replace the mandible. ( something that could still be in my future if the much simpler sequestrectomy
does not work.) I am working on the aspiration by trying to be more diligent about swallowing exercises and how I swallow. I have heard of others who even had to return to the feeding tube, and I certainly don't want that.
As I mentioned earlier, I have come across a couple of survivors who were treated a year or so before me (before IMRT) who have dealt or are dealing with similar issues. I am curious if there are other out there (Brian Hill?) who are facing the same kinds of issues.
As I like to say, for the last 8 1/2 years or so I have been living the dream: working, traveling, and enjoying life. But the gift that keeps on giving, radiation, has re emerged to cause these health problems. The good part is that I survived. The bad part is that with long term survival, comes these problems left over by the radiation all of those years ago.
Which leads to another question.
I too have noticed posts here and on other OC sites that speak of jaw/bone/swallowing issues from those who are long term survivors who had rads prior to IMRT.
Are there long term survivors who had IMRT rads and are experiencing similar issues?
Danny, sorry to hear you are having issues from rads. Im very glad you are doing HBO to prevent further problems.
Hope you hear from other long term survivors soon.
Hi Danny,
I guess I was a bit ahead of my time...
I was about a year after you and I am having some late effects of radiation also. I had XMRT and started having problems about 4-5 years out. I have lost about 50% of my weight and muscles have atrophied head to toe. I struggle to swallow, speak and breathe. All attributed to radiation damage.
Ed
Christine, thanks for being there, as always.
Uptown...sorry to hear what a tough time you have been having. I have been dealing with very little compared to you.
Danny,
What type of radiation did you have XMRT or IMRT?
I had IMRT and I'm now 7 years out with no "new" problems but you and Ed are further down the road from me. Have others that are now experiencing long term radiation problem had IMRT to your knowledge?
David,
I, like Brian Hill, and 2 other gentlemen that I was referring to, all were treated at MDACC in the early 2000's and all had the regular radiation. In fact I never heard or read the term IMRT, until after my treatment when it was mentioned right here on this board.
Eric, I am, indeed, working with the swallow people. The speech path. wants me to enroll in her "swallowing boot camp", which I plan to do once I heal from the next sequestrectomy.
I really started this thread to hear from long time survivors about what post-radiation problems they are experiencing. While this discussion of nutrition is no doubt interesting to some people, I wish that you had put it on another thread rather than hijacking this one with esoteric diet recipes.
Sorry, I don't mean to be rude, but that is how I feel.
I will fix this a little later today by moving the diet posts to their own thread. It takes more time than I have right this minute to fix something like this. Sorry I didnt catch it sooner!
Hi, Danny,
My husband is 5 years post diagnosis and he had had numerous issues related to radiation: osteoradionecrosis leading to mandibulectomy; aspiration and difficulty swallowing; stiffening neck muscles; recurrent fistula; fatigue; and worsening speech. Like you, he has not had any recurrence but we could not have guessed that these post radiation issues would continue long after initial treatment. Given all that, we live a pretty normal life. He is healthy and active and has some limitations. We have been able to work around the things that get in the way by adjusting his diet, and the expectations of others. We do have to be diligent with aspiration and he sees a pulmonary doc every 6 months. Other than that, life goes on. I have finally allowed myself to relax a little and not get alarmed when he is not at the top of his game that day. However, recurrent infection has made us both wary of any minor changes to his skin which are typically the first sign something isn't right.
Congrats to you for being a long time survivor. I love knowing that you are living life on your terms. I am sorry that you have had to deal with post rad issues so long after your treatment. I wish you the best with your jaw and I hope that you stay healthy following your aspiration pneumonia. The lung doc did say that if my husband gets a fever to contact her and she'll call in an antibiotic pronto. So far, we haven't had to do that.
Best-
Anita
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
Just got barium swallow results this morning. Husband is pretty much aspirating everything. So no more food or even water...they are putting him on an NG tube until he is strong enough for a Peg tube.
I guess a part of me is glad we didn't know all these issues were in our future. We were just happy that the treatment was a success as far as wiping out the cancer.
Anita
Anita,
This is difficult to read....Yes, we are warned about treatment side effects, but when they surface, it is difficult to accept. So much energy is spent on getting through treatment and killing the cancer, then facing these serious side effects feels like post traumatic stress.
I see that your husband underwent recent prostatectomy. Coincidently, that was the case with my husband, one year prior to oral Ca diagnosis. He now faces HBOT (hyperbaric oxygen therapy) due to dental complications.
As you say, we are grateful for the good years. Aside from eating/swallowing is your husband stable?
Lottie
Sorry sorry sorry.
Did he have any swallowing problems before this or did this come all of a sudden?
Anita and Lottie,
It is difficult I know but please understand a couple of things. Without treatment death is imminent. With treatment these after effects are still only a possibility and many don't suffer from them.
Lottie, your comment about PTSD is right on! Very insightful of you. The recurring cycle of clearing the oxidative stress and having it resurface is one theory of how "this" all becomes chronic. I guarantee having things go along very smoothly and hitting a speed bump like osteoradionecrosis or dental issues or neuromuscular issues is exactly what makes the recovery seem like there never was one. Enjoy the good days especially because of this.
I am truly sorry for what you are dealing with and hoping and praying for many good times through it all. Never lose focus of the great intervals of life! Never give up.
Ed
hello digtex,
I am only 4 years out and clear. But i do have a couple of things to add. I have developed pain in my neck due to fibrosis, it is 4 on 10 now but going in the wrong direction. I will go to a pain specialist at UCI in Southern CA in a few weeks and will post results. I also still aspirate food to my nose, not a significant amount, just a bit. The weight thing gives me a chuckle, let me explain. I lost about 45 lbs during treatment, I was very fit before. I wanted to get the weight back on. I call a a weightlifting supplement place. They turned me on to "Russian Bear 5000"
. 5000 cal a day! i used it for a while then switched to a product called metrex, it is about 1000 cal. Over the 4 years since TX I have not gained much weight and struggle to stay over 160 and I eat alot of food/cal per day
Steve
Hello friends,
Ed was kind enough to send me a private message inquiring about my situation and after reading this thread again, I felt that I should respond here as well. First, after 12 years, I am still one of the lucky ones. I feel good and I still travel, work and play golf. I can still eat (ate steak in NYC last week as well as a lobster roll at a street food fair and pizza). I lost 10 pounds when I became ill last spring and cannot seem to regain it, but I look normal, just thinner than I used to be. The HBO treatments caused my eyesight to become terrible due to ripening of my cataracts. The good news: I got cataract surgery and have the best distance vision that I have had since childhood, and Medicare paid for it.
I still have exposed bone where my molar came out but the tissue around it is healthy. I still tend to aspirate thin liquids but mostly only drink water anyway.
The speech paths at MDACC want me to enroll in swallow boot camp but so far I have not done so. Eating has gotten a little more difficult for me but I can still do it if I have water to wash it down. Of course washing food down with water can lead to more aspiration. They recommended food thickener to be added to liquids. I do use it when I drink Boost but don't like it in water.
The dental onc. and H&N surgeon are doing a wait and see on my jaw, not wanting to subject me to a mandiblulectomy unless really necessary. So, bottom line: I am a little skinny, and far from perfect, but I can still eat out with others, etc. without it being obvious that I have difficulties. I am happy to be alive, feeling well and able to work and play, and to eat.
Ed, you have had it really rough. No need to feel badly for me who hasn't really had it so bad.
Good luck to all and thank you for your interest.
Danny,
I have put 30-35 lbs back and look very normal, just a bit or a lot older and very thin. Sometimes it takes a lot of work to get back to your college weight. I just came at it throughout the back door, you might say.
Finally at 150 and the waist is shrinking from the fat gained eating all those bad things that taste so good. Ribs, ribs, sausage, ribs, ribeye cheesesteaks, ribs, roasted pork, smoked pork, ribs...LOL
Ed
[quote]I still have exposed bone where my molar came out but the tissue around it is healthy.[/quote]Hello, I am just 4 months post-tx and have had this condition too. It has been nearly six weeks and the dentist just says "looks good", come back in two weeks for a followup. The exposed part, maybe 5mm, seems to move a bit and tissue covers up the original exposed part. So, in a way improving but also moving so net zero.
He states the bone demineralizes and fades back which seems to be occurring but why does does new bone become exposed?
It causes a lot of pain up and down the side of my face and up into my skull. Do I just live with this or find a specialist cancer dentist?
He has been choking on food for a few years - but this got suddenly very very bad right after the prostatectomy. In fact, we were driving home (6 hours) from prostatectomy surgery and he started going downhill - by the time we got home, I had to call an ambulance.
He has had 2 bouts of much more minor pneumonia in the last few months - too bad the doctors (and us) didn't pay more attention to the cause (aspiration) on those earlier occasions.
Hopital doctor told me last night that they see his issues, usually at 20 years out for H&N patients, not his 10 years out.
Donfoo,
I have found that ordinary dentists often are not very familiar with the effects of oral cancer treatments and all that it entails. I would suggest finding a dental oncologist at a CCC. I would assume that such a person is available in the Bay Area. I have been seeing my dental onc. at MDACC on a regular basis and he is monitoring the situation.
Good luck.
I found out that Dana-Farber's H&N department does not have dental oncologists on staff. There are two dental oncologist at associated Brigham & Women's Hospital.
However, they only see patients currently undergoing treatment. I then asked to whom the dental oncologists refer post treatment. The answer was back to the patient's general dentist.
Hi Travelottie,
Have you tried Mass General Hospital - not sure if they only take existing patients, but worth a try...
http://www.massgeneral.org/dental/services/treatmentprograms.aspx?id=1322Regards,
Nancy
I also have pain on the side of my face...is it on the side of your cancer ? is it very painful ? I've had this for a month now...have had clean PET/CT Scan sept 16th but have been feeling chills and no energy for the last 2 weeks...have you had these symptoms as well...what kind of surgery did you have?