Hello everyone, please excuse any newbie errors since I'm new to this board, but I'm not new to cancer. A little background info since I don't know how you add that.

I was dx in 10/09 with SSCN of the tonsil, base of tongue, valleculla, and three bilateral lymph nodes. I received TPF..taxotere, cisplatin and 5-FU induction chemo for 5 days, which hospilized me for 6 months, and unable go complete the rest of treatment. A PET scan was finally done in 7/1o, and amazingly came back all clear! Two months later, I had a recurrence in two left lyphn nodes, and ultimately 35 IMRT treatments completed in 3/11. Not chemo since oncologist refused due to my confition, and prior reaction. Follow up scans and FNAB in came back with cancer remaining, plus a new lymph activity. I had a radical neck dissection in levels Ii-V, neck muscle, vein, artery on 10/11. Pet scan all clear a few months in 2/12, but in 4/12 another lymph node was discovered. Surgery to level V done on 6/22/12. Two days before surgery, another swollen lymph node was discovered in level III and removed during the scheduled surgery. Pathology shows both SCC, no clear margin, and the mass/tissue, unsure now if it was a lymph node, had perinueral and Lymphovascular invasion.

Oncologist may do Erbitux, since i can't take chemo due to kidney, and immune system. Radiation oncologist said he can do 50Gy to levels III and V, having already 60 Gy to that area. He is afraid of artery damage and damage to the brachial plexus nerve. Surgeon is not confident he removed all the cancer beitwain was on the artery and afraid of damaging it. medical oncologist said I would be disqualified fir most clinical trials.

Sorry for the long intro. Looking to see what anyone else did for a 3rd recurrence, Reirridation or anything else helpful.

[quote=PaulB]A little background info since I don't know how you add that.[/quote]
Adding a signature is easy. Just click on My Stuff (at the top of the page) and scroll down. You'll see the box to add signature information. Common abbreviations you may see in other people's signatures can be found here.

And welcome to OCF -- the best place around for information and support. There are several people here who have had multiple recurrences -- you can start by looking for posts by ChristineB, one of the admins here.

Thank you. I' ll try. I made it this far, so it's not too bad.

Welcome. I have had two occurances both with surgery and radiation following, but my time frames were much extended from what you have endured. With the second cancer I told them to hit me with their best shot and they did, but your cancer sounds much sneakier! One of the things about this cancer is that we are all so different. Keep posting - I am sure some will soon post who have better advice for you.

Donna

Hey Paul... We know each other from facebook and cancer sucks. I was going to comment on what you posted there - in fact I did but lost it - very frustrating.. - I know you have a big decision to make everyone here will likely give you their opinion. But I'm going to lob mine in your direction. - recurrences are just another way of saying we didn't get it all - in dr speak. Since they have already told you that they aren't sure if they got it all this time either the do nothing option is off the table is you want to beat this. So your only other options are rads and chemo, (In your case Erbitux) or a combination of both. Chemo - Erbitux will not kill this alone. - and rads by itself is great at doing what it supposed to in the area that is within the field and spray radius - but any microscopic cancer outside that area will not be taken care of - that's why they use chemo.
It's the housekeeper that gets what everyone else missed. Erbitux is meant to work in that fashion. I totally understand your ambivalence but I think to effective treat this you need to do both.. Please ignore the other odds they are throwing your way - frankly drs never give you a yes or no answer as they never know for sure and they always tend to lean towards worse case scenario. If you flip the numbers you were quoting with regards to the carotid and nerve then that will off you more clarity I hope - that's a 90 % - 75% that you won't end up with the nerve damage or a blown artery. Still way better odds than the potential 0% that comes with a serious cancer dx. Hugs...
You will get through it.

Paul, welcome to OCF! Im so sorry you are going thru another recurrence!!!

There are a few members like Pandora and Charm who have had radiation twice. If you are not being treated at a major NCI cancer center than I would suggest go to one as soon as you can. They are most familiar with treating difficult cases like yours and may be able to have something else you can do. I would still suggest you go to a CC for a second opinion, there are some in Philadelphia and also in Baltimore, I think also in Boston. Check out the list and please try not to let location be what makes your decision.

Ive had oral cancer 3 times and Im very fortunate to be here. I credit the OCF's founder, Brian Hill and the members of this forum for helping me get thru that last round. I almost refused treatment but they helped me to see that I couldnt give up without at least trying to get well. I know its a hard road with difficult choices to make.

Cancer Centers

Paul

As you can see from my signature, I had 72GY the first time and was told then, the safety standard was 77 max for all radiation TX total. But when my radiation oncologist saw the pathology report of perineural involvement (PNI)on the recurrence, he said that Cyberknife has a much better focus than IMRT so he could safely target the tumor area without too much additional radiation damage to the already irradiated areas.
Plus with CyberKnife's accuracy they can increase the amount of radiation. With IMRT, I got an average of 1.8 GY for each of the 40 sessions. With CyberKnife, I got an exact whopping 5GY a session for only 5 sessions although each session was one hour. Plus the Cyberknife moves around continously that entire one hour to bombard the areas with about 12x more angles each node than IMRT can manage.
It cannot hurt to ask your radiation oncologist about CyberKnife although it is more commonly used for prostate and lung cancer and brain cancer due to it's accuracy and ability to stay centered on a tumor despite the patient's breathing or swallowing during the session. My TX was at a CCC; the Lombardi Cancer Center in Georgetown hospital in DC

Charm

Thank you Christine. Sorry for the late reply. I thought it was linked to my e-mails, but I'm not tech savvy. I go to a major teaching hospital in NYC. Not sure if I can mention names, but the abbreviation is MSSM lol. I will try to post my pedigree info like you all have to make it brief, so I figure the Dx,Mo, RO, Tx stuff out lol, but I can wing it, and refer to a kind posting explaining it all.

Thanks. That was one of the first things I asked about, cyberknife. They do, only recommend IMRT, and IGRT only. I may consult with others, and don't want want to commit myself to 50Gy for 5 weeks. You renewed an interest.

Hi Cheyrl, we keep bumping into each other. I was burned once by chemo, and it was so horrific, that there is no thought of doing it again. Erbitux is the only option, but I have to go to my original oncologist, and see what she says, and why she said no to chemo several times, and Erbitux, but I think I already know the answer as was told, .my health, kidneys and immune system are poor, which I hate to admit. As per the new MO at a very populat teaching hospital in NYC, they are not even sure if Erbitux works by itself, no chemo for that matter i hesrd for orohpharynx cancrt or Erbitux after surgery? There are still trials goin on. No EGFR testing is done prior for the K-RAS gene mutation for H&N cancer, but it is for Colon/ Rectal. I got sidetracked lol. I had every possible ailment from TPF..taxotere, cisplatin, 5-FU, and could not walk, stand for 10 months, and no doctors ever seen or heard such a case as mine, at least lived to tell it. I'm blind in one eye because of chemo, lost 100 lbs and reminded daily through the pains, but doing much better than 2 years ago. The carotid artery is a concern due to the weakening of the artery wall from the two surgeries.. I'm just not convinced enought yet. They dont't hsve to wine and dine mevto chsne my mind, but give a liitle confidence to help. Called Memorial Sloan Kettering. Have to fax, mail everything. Go to my hospital Monday to sign off HIPPA form for records, slides. Tuesday, I hope to go to my old, she is younger than me lol, oncologist, who has a personal interest in me, and is also my hemotologist for a blood disorder. Wednesday, I see the ENT to get the stitches out, and see what he says, but I'm sure will not commit. Also, I plan on calling my old RO, even though I was turned down for rads, but I think she will still consult with me, and will update her on the latest findings. I'm even tired of writing this lol.

Thanks for your input as usual. I really appreciate it, an your suggestions will help weigh in on my decision making.