Hello all.
I have just been diagnosed with osteoradionecrosis of the jaw(ONJ). That means there is exposed bone inside my mouth either from prior radiation treatment, bevacizumab, corticosteroids, or a combination of those things.
Early 2012 I was diagnosed stageIV throat cancer. I did 9-weeks of radiation (I do not know the numbers on that) and low dose chemo with cisplatin, only 4-treatments. I had the peg tube in (twice) and did all the suffering many of you here know all about already. I was lucky though. I believe the last treatment was end of June 2012. Several months later I was told I was cancer free.
Early 2013 ct-scan showed small spot on my lung. Chemo doctor felt 6-month wait on next ct-scan was good idea. I asked "are you sure?" Following week I had prior scheduled visit with radiation doctor and put same question to him. He gave me some talk about new standards, used to be 3-months, but he would do same thing. I let it go.
6-months later spot doubled in size, plus more spots and "ground glass" area upper left lobe.
1 PET scan and a couple of lung biopsies later I am stage IV lung cancer with tumors in both lungs and I find out it is HPV-16 primary from the prior throat cancer. No one bothered to check for the HPV before, apparently.
Okay, so now I'm in a clinical trial using bevacizumab, carboplatin, & docetaxel. I've had 2-treatements at a 21-day cycle. First results show large tumors half former size. Word cavity used a lot to describe places where smaller tumors were, and the "ground glass" area also. Great news.
I've twice had low white cell counts(neutrofil) about a week after treatment. Also I had a mouth infection to which I was advised to see dentist right away. First time dentist found no tooth problems and prescribed clindamycin. The antibiotic worked wonders first time and pain cut in half next day. Second chemo cycle the antibiotic did not help and I found the exposed bone under lower left 3rd molar.
Now, that said, I've just begun to deal with this and I don't know anything yet except for diagnosis is confirmed by oral surgeon. I will share info as we progress. I've seen the pictures on the Internet and I really don't think I want to give up my jaw. I just feel like I've been through enough and can't imagine going there.
My question: can anyone here share experience with this condition? Is it beneficial that I have discovered this early? Honestly, I don't know how much bone has died beneath my gums due to lack of blood-flow, so calling this early may be wishful thinking. Any experience and advice with treatment options would be greatly appreciated.
Word of Warning: anyone who has had prior radiation for head and neck cancer may want to be weary of clinical trials involving bevacizumab (Avastin), which is a VEGF inhibitor. In laymen's terms, it is designed to restrict blood flow to tumors so they cannot grow. In my case this may have been the straw that broke the camel's back in relation to my already thoroughly cooked jawbone. Bevacizumab is already successful and FDA approved for treating other types of cancer. I have squamous cell(as opposed to non-squamous cell carcinoma) non-small cell lung cancer, which is not typically treated with this VEGF drug, but because my primary cancer source was head & neck, HPV-16, I qualified for the trial. My tumors have reduced in size by half in just two treatments. Whether or not that was thanks to the targeted drug or the carboplatin & docetaxel alone, I can't say. Unfortunately, I feel forced to refuse any further treatment with this drug because it restricts blood-flow. The more I think about it I find myself in disbelief that I was ever put on this drug with my history of radiation treatment.
I'm sorry if I rambled on. I'm really just looking for advice about treatment options for ONJ. Again I appreciate any words of wisdom here from those of you who have dealt with this condition.
Thank you.
Sorry to hear your journey is so complex. I don't have the words of wisdom you seek, but I did want to welcome you to the family.
Your case is one of the more complex ones I've seen, so it may take a day or two for the people experienced in what you need to know to find you here.
Don't get discouraged, they will be along directly.
Gook luck,
Tony
Welcome to OCF. You have been through a lot and face some tough road ahead.
I'm glad to hear you got the early 2013 scan as that was a lifesaver in spotting the metastasis to the lungs. The trend to skip scans post tx is worrisome and even in your case it was 6 months between the first scan and the followup.
The fact 6 months went by before new treatments start sounds scary but in fact, the first scans showed the mets to the lungs. It is pretty rare that distant met recurrence is ever killed; nearly every case treatment is palliative rather curative, even when surgery or rads are done on the lung tumors.
I just had this discussion with my primary ENT who does a scope and grope on me every six weeks. He wants to do a scan at 12 months post (I did have an initial PET/CT done 12 week post) so it is about 9 months between scans.
His philosophy seems harsh but pretty logical. Once you have distant mets then you are in very deep doo doo. It is highly likely that treatment is palliative so you are just running out the clock. From a broader vantage point, it just becomes a question of how much time did you get on the clock.
Sorry if this sounds raw but it is how I do view recurrence should it be dealt to me. Just makes me enjoy every day as much as
Welcome to OCF. You have been through a lot and face some tough road ahead.
I'm glad to hear you got the early 2013 scan as that was a lifesaver in spotting the metastasis to the lungs. The trend to skip scans post tx is worrisome and even in your case it was 6 months between the first scan and the followup.
The fact 6 months went by before new treatments start sounds scary but in fact, the first scans showed the mets to the lungs. It is pretty rare that distant met recurrence is ever killed; nearly every case treatment is palliative rather curative, even when surgery or rads are done on the lung tumors.
I just had this discussion with my primary ENT who does a scope and grope on me every six weeks. He wants to do a scan at 12 months post (I did have an initial PET/CT done 12 week post) so it is about 9 months between scans.
His philosophy seems harsh but pretty logical. Once you have distant mets then you are in very deep doo doo. It is highly likely that treatment is palliative so you are just running out the clock. From a broader vantage point, it just becomes a question of how much time did you get on the clock.
Sorry if this sounds raw but it is how I do view recurrence should it be dealt to me. Just makes me enjoy every day as much as I possibly can. The sun, the wind, the sound of the frogs and birds, the kids laughing and running around, the funny way the cat begs for hugs and kisses. Every day is a blessing, every one.
Maybe it is the high cost of ct-scans & PET-scans, and their fear of possible resulting false alarms, that prompts these doctors to choose such lengthy waits between exams. Maybe we should be looking for ways to reduce the cost of these potentially life saving exams rather than infecting patients with a no-hope-run-the-clock-out-attitude in the face of possible recurrence? Not me, my clock's not a stop watch, I'm going down fighting. If there had been a 9-month wait I might be next to death now. But I'm not. In fact, after 2-treatments my tumors were reduced in size 50%. These "5-years to live" statistics out there now are old and don't take into consideration advances in targeted therapy drugs. I think there was a poor choice in giving me bevacizumab(avastin), a VEGF inhibitor, considering my history of radiation treatment. Maybe another monoclonal antibody drug such as cetuximab(erbitux), which is an EGFR inhibitor, would have been,and still is, a better targeted therapy drug in my case. Don't let them kill you donfoo just because a ct-scan costs too much. Maybe your doctor needs a nudge in the right direction. I didn't nudge mine hard enough.
Now I look back at what I've just written and hope I'm not too raw for you donfoo, not my intention. In fact, you've maybe helped put the fire under me that I need right now. I also see me, a mere circus clown, using terminology like monoclonal antibody therapy treatment. Truth is my cancer education has just begun--it should have begun early 2012 the first time I was diagnosed. No one at my rurally located cancer center explained to me the potential benefit of a clinical trial. They didn't tell me about the side effects I would be suffering through, nor how to better cope with them. That's the beginning of a list I don't have room for here. Point is I feel the need to be better educated and proactive here, even if I'm the one educating me. Last time I just sat in the back seat.
Now the VEGF inhibitor, bevacizumab(avastin) binds to vascular endothelial growth factor and is designed to prevent new blood vessel growth, which tumors need to grow. At stage IV lung cancer I was kind of rushed into making a decision and opted for this clinical trial because I read targeted therapy drugs and clinical trials were the best chance for survival. I want to survive, I have things to do. An EGFR inhibitor, such as cetuximab(erbitux), which binds to epidermal growth factor receptor and is supposed to "turn off" these receptors and stop cancer cells from uncontrollably dividing and growing, maybe that's what I needed. Cetuximab has been approved for head & neck cancer since 2006. Maybe the clinical trial is not what I needed, and maybe some good advice (not influenced by pharmaceutical industry) is what I needed. What's done is done and I move on.
Now the only mention of treatment for osteonecrosis of the jaw(ONJ) I've had mentioned to me yet, at this early stage, is hyperbaric oxygen therapy(HBOT). Think, "Boy in the Bubble". This can unfortunately increase growth of cancer tumors I was told also. The oral surgeon I met with also talked about chipping away some of the dead bone after my chemo is finished. About 2 more months of chemo would have been too long. It has been halted now anyway.
Still accepting helpful suggestions for possible treatment options.
Ways to bring blood-flow back to dead, or dying bone? Are their certain foods that could help? While I am not receiving chemo, I plan to exercise like a madman as soon as I feel it is safe to do so. Does anyone know if just chipping away this layer of dead bone may have a positive outcome? Hyperbaric Oxygen Treatment, any insight?
Thank you.
Pentoxifylline with Vitamin E is sometimes used to treat ORN. I need extractions, and was told I could not do HBOT until clear of cancer, and after my 3 month post treatment scan.
http://www.ncbi.nlm.nih.gov/pubmed/20638190
Hi Malwicker, I'm in somewhat of a similar situation as you, except for the exposed bone in the Jaw. I've had 3 full-blown recurrences, only mine have all been in the liver.* Donfoo pretty much nailed it about the nature of the treatments once you go from Stage IV to Stage IVc. as the published survival rate for us, 5 years after confirmed dx of "Distant" metastases, is Zero and all treatment is palliative. Intended to postpone the inevitable as much as possible while keeping the patient as comfortable as is achievable considering the patient's condition.
* The last batch of tumors in my liver seem to have been defeated by the packing of the arteries in my liver with radioactive beads, but a lymph node between the liver and the stomach showed up "hot" at the same time the third batch of tumors appeared, and today I'll go for my 5th (of 15 planned) radiation treatment for that node (which had grown from 0.2 cm to 4 cm.)
In my own case, it's looking pretty good that I'll make it beyond 5 years (my confirmed dx was Feb, '12, so that's less than 2 years away and I am in good health, (other than "that.")
Since your mets are in the lungs (the most common location, I've read) I can't offer much about your situation, but I'll tell you what worked for me:
First set, I had a cocktail of Carbo-platin and Taxol (the Taxol was changed to Taxetere when I started to lose more hearing) and tx lasted from 2/12 to 6/12, and no tumors remained.
Second set showed up 90 days later on first Post Tx PET (PTP). This time, we treated it with Xeloda, a PILL form of 5 FU. Pills taken 2x daily w/food. Tumors gone early 3/13, back again 90 days later at first PTP. We tried Xeloda again in mid 7/15, but on Oct 1st, the PET showed that the tumors were still all there and had grown, and a new set had arrived (along with the single lymph node I'm treating now)
This time, we tried a technique that has shown great success treating liver cancer. A tube is inserted into the Femoral Artery and run up into the liver. On the way, arteries that branch off to feed other organs are blocked and the internal volumes of the two liver lobes are measured. Two weeks later, the right lobe is packed, and two weeks after that, the left lobe is packed.
That's it, no chemo involved. The beads are about the 1/3 the diameter of a human hair and a tiny chunk of Yttrium-90, a highly radioactive isotope (beta emitter) and once inside, they just sit and zap the tumors. Very effective.
And now with them in hand, we're going after the 4 cm lymph node. My MO thinks that we can do this easily, and that I could have as much as several months before having to deal with it again.
That's all I've got, I hope it helps!
Bart
Hey,
There are very few more thick than I around here. So pound away! Personally, the ongoing dialog with my current ENT is ending as I am changing med insurance and will be selecting new providers.
Cost of CT is quite reasonable but PET remains somewhat expensive. The position stated about less scans is what my doctor thinks and is consistent with a general trend away from frequent post tx scans. In the broader population, is it driven by economics or science? Who really knows.
As to ORN and HBO. I was just mentioning this to my wife this morning. If one of my lower teeth needs extraction and HBO is required, then I am going to get them all pulled and be done with and get dentures. At least for me, that puts this whole issue to bed.
It's more the injury to the jaw like from surgery, dental implants, extractions, dentures rubbing than anything spontaneous after radiation, and that it also depends on where radiated, amount, usually above 60Gy, to cause ORN, and the use of HBOT is controversial, and use depends on each individual. I understand malwicker's point that Avaston may have reduced the vasculature, angiogenesis, to the jaw, which has something to do wih ORN, which HBOT may counter.
Thank you for the link PaulB. The abstract there gives me hope. I don't like the sounds of iterative spontaneous sequestrectomies in 36 patients, but I do like that all 54 patients experienced complete recovery... median 9 months.
Thank you very much.
I got call this morning that I am scheduled for extraction (a wisdom tooth that decided to poke its head out of my 46-year old gums recently without my knowledge, and immediately thereafter festered itself a large cavity) this Thursday, and "breeding", for which I am not yet sure what that refers to. Either bone-scraping or oxygen treatment.
I am glad they are not dragging feet on this and I can get back to chemo (bleh) as soon as possible.
I will be echoing the term Pentoxifylline with vitamin E very soon.
thanx PaulB.
Hi Malwicker, and welcome -- I'm sorry for all you've gone through and are going through now. You sound feisty and I think that's very much in your favor
I would guess that "breeding" may have been "debriding," removal of dead tissue and bone.
Your story is further evidence that the scan situation needs to change, especially for HPV + patients. There was further research presented at a recent conference regarding HPV + cancers showing up at distant, unexpected sites 5 years out. Will try to find the link.
My insurance company denied even ONE post-treatment scan and my doc had to fight all the way to a call with the ins. co. medical director. I think the resistance to scans is coming from insurance companies in some or perhaps most cases.
My thoughts are with you, stay strong --
Lynn
Malwicker, thank you for the warning about vaso-constricting drugs (I myself am a self-trained monkey with the jargon). I'm adding it to my list of long-term issues to be on the watch for.
Here's a link to a study presented at the February HNCC conference that found distant mets later than typical and in atypical locations among a small sample of HPV+ oropharangeal survivors. I think this justifies more frequent scans over more years, contrary to the current trends limiting scans. These mets aren't going to be found through palpation!
http://www.redjournal.org/article/S0360-3016(13)03340-3/fulltext
For the truly geeky -- you know who you are -- here's a link to abstracts of all the HNCC papers presented at the conference -- scroll down to "Head and Neck Supplement":
http://www.redjournal.org/issues?issue_key=S0360-3016%2813%29X0017-3
Please check out the Vitamin E with your MO - at least when my husband was under treatment, there has a correlation with vitamin E and recurrence; I can probably find the study if you like. Maybe Vitamin E has been cleared for use since, but its worth a question. Supplements that help normal tissue may also help cancer.
Maria
Wow I am overwhelmed with all the responses. Mamacita Lynn I suddenly have so much to read. Bart your treatment method is fascinating. I'm glad it is going well for you. I will keep in mind the warning on vitamin E
Thank you everyone.
Welcome to OCF. Ive been reading your posts and the replies. Im sorry I havent had enough time to write to you until now. I have considerable experience with HBO. If you have questions please feel free to ask and I will hopefully be able to help you.
As far as ORN, if nothing is done it will only get worse. Better to treat it while it is small and easier to control. Sometimes only a minor surgery in the office is enough to take care of ORN. HBO should be done according to the Marx Protocol (20 prior to and 10 after the procedure). This is only done if no sign of cancer is present as cancer LOVES oxygen and thrives in that environment.
Best wishes!
I forgot about vitamin E. it's said vitamin E, Beta Carotene can promote early cancers in the lungs, but that could be lung cancer, not sure about metastases from other areas. It's also said in some reports vitamin E can inpact survival in head and neck cancer when receiving radiation therapy, but like Maria said, not sure if any thought about antioxidants has changed, have seen some that said yes, but your doctors will know best.
It was thought tumors thrive in highly oxygenated areas, I guess in tumor surgery oxgen pressure matters, but they now say tumors thrive in hypoxic tissue when the tumor spreads, angiogenesis. That's my question to my doctors with HBOT, and wonder if it's the old school thought or their thinking about blood supply to feed the tumor...more confusion lol.
Thanks for the links Mamacita.
Here is information on ORN, to help you as a guide through the process to discuss with your doctors.
http://emedicine.medscape.com/article/851539-overview
Yes more confusion. Scheduled for debridement at oral surgeon tomorrow. Not sure what is appropriate to do about wisdom tooth that needs extraction, ugh. Decision will be made tomorrow at 8am.
A link to the Forum Etiquette has been brought to my attention and I see that I've started a thread where I should have just wrote a simple introduction. My apologies gang.
The forum etiquette link was sent to you (and all new members) so everyone can easily learn how to navigate the forum and add their signature. As I explained in the PM, it has detailed instructions on how to make a signature. Having a signature is VERY important around here and will only help you to get replies. You are just fine continuing to post on your thread.
Good luck tomorrow!!!
Two teeth pulled last Thursday, and some bone removed from "hole" where tooth on bottom jaw was. This would be directly above site of exposed bone, and oral surgeon said it had to go to get to site. I didn't like this, but it was a little difficult to mull it over when already sitting in the dentist's chair. I have mouth full of stitches and have been on oxycodone since, otherwise I would have updated sooner. I still see exposed bone in my mouth, so there will be another procedure in near future. I'm a left a little confused by the whole mess and I don't like it. We'll be making me more enlightened tomorrow when I see onc doc and dentist.