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#58411 05-28-2006 05:56 AM
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minniea Offline OP
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If we can get hearts and, now, entire faces, why can't we have salivary gland transplants? Has anyone ever done a study on this?


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.
#58412 05-28-2006 12:28 PM
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Hi Minniea,
There are a couple of items in the news section of the OCF that relate to this.

While I've not seen any information about a salivary gland transplant, there are studies where the glands are removed before radiation and replaced afterward, and one talks about genetically repairing salivary tissue genetically after treatment.

Here are the links:

http://www.oralcancerfoundation.org/news/story.asp?newsId=632

and
http://www.oralcancerfoundation.org/news/story.asp?newsId=57

You ask a very good question. Best, Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
#58413 05-28-2006 02:27 PM
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I have also heard of a surgical procedure where the salivary gland is moved to a different location but left connected somehow, out of the radiation field.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
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#58414 05-28-2006 03:52 PM
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minniea Offline OP
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Thanks for the replies Sheldon and Gary. The articles were good. I know lack of saliva isn't life threatening BUT it is life altering. If we can transplant hearts, we should be able to do the same with a salivary gland. I wonder why that hasn't been done yet? Is it due to the lack of "knowing" out in the big world about oral cancer and it's after effects?


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.
#58415 05-29-2006 12:16 AM
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Hi Minnie,

Right after getting over my surgery I started email contact with a Dr. Andy Wolff in Israel who is the developer of a device to stimulate saliva production. See this article on the OCF website:

http://www.oralcancerfoundation.org/news/story.asp?newsId=626#top

I tried to get involved in the US testing of this product, but I'm not sure if that has even ocurred yet. I started emailing him last June and then contacted him again in November. He had promised to keep me in the loop, but I have not heard from him since then.

I have sent off an email to him this morning and will let you know what he has to say.

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"
#58416 05-29-2006 06:02 AM
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minniea Offline OP
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Jerry, I remember reading this article last year and then never heard anymore about it. Just seems to me that the salivary issue is a solveable one, given the many other medical miracles taking place in our day and age. Please let me know if you hear anymore on it.


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.
#58417 05-29-2006 04:04 PM
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Minnie,

Again good luck tomorrow.

I got an email response from Israel today and Andy said that he is still working on FDA approval. I will keep the forum posted when I hear anything else. He has promised to keep me posted.

Coincidentally, Andy mentioned that he heard Brian speak in Puerto Rico this month and was impressed with his speech. Certainly not the first time I've heard that about Brian.

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"
#58418 05-31-2006 04:11 AM
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To All,

I neglected to give a link to the Saliwell website. It is: www.saliwell.com. You may find this to be very interesting, especially if you have xerostomia.

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"
#58419 06-04-2006 07:05 AM
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Hi minniea - I didn't have a salivary gland transplant but I did get mine "relocate" under my chin so radiation wouldn't affect it. Fortunately, after my radical neck dissection my Drs feel they got everything I will be monitored for the next while. I could have chosen another method, which was a medication to activate the saivary gland throughout radiation - I didn't really hear great sucess with that so I opted for the other. The salivary gland transfer is being tested by my Dr. - Dr. Jha and his partner at the Cross Cancer Institute in Edmonton Alberta, Canada. They have a website if you wanted to contact them. regards, terry

#58420 06-04-2006 02:14 PM
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To All,

I've been informed by Dr. Wolff in Israel, that the link above is not working. He has no idea why. You can, however, type it directly into your browser and it should work.

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"
#58421 06-05-2006 06:41 AM
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Very interesting. I do have A Salitron device and used it after radiation for a brief period and it did help with saliva production. Since I was also on Saligen, I did not have a very dry mouth but my saliva was very thick. The Salitron device stimated whatever nerves to the gland that produce the thin saliva so I was almost back to normal. I don't know if this is even made anymore and when Brian checked with MD Anderson a couple of years ago, they had not even heard of it. I don't know why the ariticle calls it a 'video device', mine wasn't nor was it something you carried around. You were supposed to use it 3 times a day for about 5 minutes for a month. This new gadget sounds like a great improvement.

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
#58422 06-09-2006 04:12 AM
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This link will work now. www.saliwell.com


It tried it and it worked for me.

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"
#58423 06-09-2006 09:56 AM
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Jerry, in your future conversations with Mr. Wolff could you ask him where a person could go to get this device? I would really like to try it FDA approval or not.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#58424 06-09-2006 07:35 PM
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Mark,

I have a feeling that he will say ....since it is not FDA approved yet, he can't doing anything for you at this point in time. However, I cannot speak for him. I am sure that he would welcome an email from you. I know he was anxious for the link to work so that our members could read about the Saliwell device.

Try : [email protected]. You can then post his answer here to avoid multiple contacts with him about the device.

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"
#58425 06-10-2006 04:11 PM
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This may be the most exciting thing coming down the pike, short of a complete cure. I am one of lucky stage 4 survivors who can still spit quite nicely, but for everyone who cannot, what an incredible quality of life improvement this will be! Although I stay as far away from politicians as I can, this is one time when I wish I knew someone who could fast track this through the FDA.

Thank you very, very much, Jerry, for supplying much more than a glimmer of hope!

#58426 06-10-2006 10:28 PM
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Indeed. That's a very hopeful-sounding little device. I hope you'll keep us up to date on when it will on the market or even coming up for a clinical trial we might be able to participate in (I too am taking salagen but getting a lot more thick saliva than thin saliva).

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"
#58427 06-11-2006 08:08 AM
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It sounds like a good idea.

Here's the regulatory process. If it is deemed a "non-significant risk" (NSR) device then a letter to the hospital (or sometimes private independent clinical investigation contractors) for an internal "Investigational Device Exemption" (IDE), could get clearance to use it in a "beta testing" or clinical trial situation. This is done all the time at teaching and reseach hospitals (it would require prior approval by the "Institutional Review Board (IRB) at the facility. Since it is implantable and introduces energy into the body, it might be considered, by the FDA, to be a "Significant Risk Device" (SRD)(or converesly a new technological advance), in which case, an IDE would have to be filed to and cleared, by the FDA, prior to it's use on human subjects. Because it is an implant, patient contact material biocompatibility safety could also be an issue. I would imagaine the the manufacturer has already done that testing (ISO 10993). Similar devices like TENS units are considered "Class II" and require a 510(k) clearance to market. If this device has no existing predicate device in the market (i.e. a similar device with 510K clearance, then it could well be deemed a "class III" device, requiring a full blown Pre-Market Approval (PMA). This process is lengthly and can take a year or more. It is also very expensive.

"Fast Tracking" through the FDA is only allowed for devices that can have major, provable, life saving benefits. "Quality of life" devices typically to not fall into this category.

There are numerous other side issues - this is a foreign company and compliance issues differ in foreign countries. They would have to be in compliance with US FDA GMP/QSR (Good Manufacturing Practices/Quality System Regulation as well) and prior to the FDA acceptance of a IDE, if a PMA is indeed needed, they would have to request and pass a GMP/QSR audit/inspection by the FDA, at their manufacturing facility. Currently they are not listed in the FDA database as a medical device manufacturer for the US market.

If the device is, in fact, class II or III (which in my professional opinion would be) and it has no FDA clearance to market and/or they are not registered as a medical device manafacturer, then it is considered, by the FDA, to be an "adulterated, misbranded" product. It's use on human subjects here would be clearly illegal. Especially if there is no IDE on file. They would need an FDA approved IDE for clinical studies in the US. They would have to be a registered medical device manufacturer prior to submitting an IDE.

I am a regulatory professionl and just the messenger - so please don't debate me on this. This is ALL factual information and you can click on the link below and see for yourself. I just don't want to give false hope that this will become available simply by emailing to Israel and having them mail you one anytime soon.

Here is a link to the FDA describing, in more detail, the regulatory process for getting device cleared to market.
http://www.fda.gov/cdrh/devadvice/3122.html

Non regulatory issues would be that this device could well be damaged by radiation so it would have to be implanted after radiation, HBO would have to be part of the protocol.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58428 06-11-2006 10:46 AM
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But Gary, how about the version that is just an insertable, then take out again appliance? Not much different in appearance than sports teeth guards. This is the one that patients describe as using two or three times a day for just a few minutes.

#58429 06-11-2006 12:44 PM
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Gary,

That sure was an eyeful. I'm sure no one will try to debate you on this. It's great to have someone with your background here to keep us informed about this, as well as all the other topics that you have such a great deal of knowledge about. I have reread your post several times and although I don't follow most of it, there is one question I have. One of the devices itself is not implantable, but is fabricated in a crown that is attached to the implant. As we all know, the implants themselves have FDA approval. So wouldn't this bypass the obstacle of "implantation"?

Joanna makes a good point about the mouth guard removable type device. This seems like it would be easy to get FDA approval, as it is non-invasive. I also think it is a more practical solution and one that will certainly be less expensive than having an implant placed. However, if someone has an implant already, that will lower the costs and they wouldn't need to take anything out on a daily basis. I'm sure anyone with xerostomia would certainly put up with a mouthguard type device, if they could get the saliva flowing.

I just went back and reread my emails from and to Dr. Wolff and what I read is that his company has needed additional funding in order to get through the process of getting FDA approval. Doesn't it always come down to money? In a May email he stated that they HAVE started the FDA process, so this is encouraging.

I intend to keep in touch with Dr. Wolff, however if anyone wants to contact the company directly, there is a "Contact Us" link on the website.

And Gary, congratulations on reaching your new milestone.

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"
#58430 06-11-2006 01:14 PM
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It would still have to have an FDA APPROVAL. As someone who has taken over 50 class 3 medical devices through the FDA, I can assure you that Gary has this right. If a 510k approval were to be granted it could happen really fast, (I just helped a company that has a new discovery device get one.) The pre existing device had to exist in the US marketplace before 1972. It took us 4 months to get through. Anything more than a 510k could take years and never get approved after all that time in process. Much of a devices class designation has to do with how much risk it imposes on the person for which it use is intended, and the claims that you wish to make about it. For instance both the Vizilite and the Velscope are 510k approved devices. Do they find cancer? Yes. Can they make that claim? No. They have issues with specificity and therefore their claims are that they are general discovery devices and not diagnostic devices. If they step over the line in the marketing etc. they can have the approval revoked. As the previous owner of a class 3 medical device company, I can tell you that FDA protocols, GMP's and the like are one of the major expenses of operation of the company. I manufactured implants, and the paper trail from the purchase of the raw titanium to the inspection of the final product was monumental.

All that said, if someone was in process of FDA approval and they let you try one out, sold you one, etc. outside of their apaproval process, it would be a cold day in hell when the FDA every approved it if they found out.


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.
#58431 06-11-2006 02:44 PM
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Well that's one more thing I will change when I am Queen of the World. These devices should be available to everyone who needs one NOW. Let people sign a release, but for heaven's sake, let the people who need them have them! Safeguards are good, bureaucracy is not.

#58432 06-11-2006 02:50 PM
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minniea Offline OP
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I still don't understand why our medical world can figure out how to create a "working" penis to turn a woman into a man yet can't figure out the salivary gland??


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.
#58433 06-11-2006 04:18 PM
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If salivary glands were essential for sex, it would happen sooner. But, lets not go there.

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"
#58434 06-11-2006 05:49 PM
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Ha ha ha! How true - we can spend millions on erectile dysfunction and hair loss, etc. but short change research for AIDS, cancer, OCF etc. It is, after all, a market driven society. Look on the bright side - now that we have conquered ED and hair loss and now the boomers are turning up with cancer so the heat is on the researchers now. We haven't accumulated all of this wealth and inheritences just to have our lives cut short. Like Dylan said back in the 60's "The times they are a changin""

The whole issue with the FDA is that people or companies wanting to sell medical devices in the US have to prove safety and efficacy before they are allowed to market them. It is to protect the US public.

It is a multidimensional issue - true, some components may have previous clearance, like the implant screw, but if there is a new manufacturing process involved then the biocompatibility testing has to be done over. Materials from the manufacturing process may have an adverse effect. Raw materials themselves are often confusing to manufacturers lacking regulatory experience, I actually encounter this a lot. They assume that because a certain material is FDA approved, that it can be used in the body but the truth is that the FDA only approves raw materials that are to be used in food containers, to insure that harmful substances are not leached out into the food.

The un-implantable device is still used in an "intact body channel" i.e. the mouth so biocompatibility would still have to be performed (although not to the level of standards that the implant would with blood, bone and long term exposure) . It is also indicated to "modify or alter the structure of the human body", i.e. stimulate the salivary glands so it meets the criteria of the definition of a medical device.

You could always move to Israel.

Doctors can do want they want (from a surgical perspective anyway) - if someone wants a sex change - that is not regulated by the FDA. And here again, they make big money on this procedure. It's an elective procedure the same as a face lift or boob job.

Comparing surgical procedures and medical devices and like comparing apples and oranges.

Be comforted in the fact that when you have procedures done, using medical devices, that they will safe and efficacious and not injure you.

I would ceratinly be happy to take them as a client and obtain their clearance to market or pre-market approval. I have well over 100 510K clearances in a wide variety of devices and applications.

510(k), by the way, refers to Section 510(k) of the Food, Drug & Cosmetic Act. The definition of a medical device can be found in Section 201(h)


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Great info Gary, you are so correct that we are a market driven society. Only here can a 9th grade dropout that has a talent for teaching a child to tumble make more per year then our public school teachers. $50 an hour for a private, and believe it or not, I pay it! AND, I know how to teach tumbling, but try teaching your own child, lol.

Not to beat a dead horse, but my questions are more about a transplant. I'm reading that they are now taking and moving a radiation patients salivary gland before that patient begins radiation, moving it out of the radiation field. Then they move it back to it's original location so it can function properly. That option, obviously, isn't there for most of us anymore. So, why can't an organ donor's salivary glands be transplanted into people like us? That is my biggest question.


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.
#58436 06-12-2006 01:51 PM
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The organ donor thing is a good question. There are always problems with rejection so lifetime drugs are given to control this. Maybe it's not possible to make a transplanted gland functional, or, more likely, the insurance companies don't have it on their schedule for reimbursement. You would be surprised how many medical devices fail in the market place because the insurance companies won't reimburse. It is the true driving force, hidden behind the scenes.
More experienced companies work on the reimbursement issues first. I am sure that given the choice between your drinking more water and an expensive medical procedure (along with expensive anti-rejection drugs for life (and constant monitoring), they would choose not to reimburse. I am surprised that they will even reimburse for gland relocation.

What blows my mind is that basketball players make more then brain surgeons.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58437 06-15-2006 06:09 PM
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You guys need to think outside the box more.

All a person needs is a plane (or boat) ticket to a place that is not influenced by the FDA. Yes warranty work might be a problem but there are some nice places to visit say around February?

Thank you Jerry, I'll contact him and report here if anything comes of it.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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