Hello all, Paulb. I see a big mac in my future. I went to my surgical follow up. The pathology was in. In the block that they took from my left neck they found 36 nodes all but three were filled with cancer. There was also cancer in my tonsil bed left side. The first three days after surgery I was feeling better and the pain was diminishing somewhat. And by day 4 and 5 things in the constipation situation started to resolve. I FELT GOOD! My surgeon had told me that they had taken wider margins and I thought that the wider margins meant a better chance of them getting it all. So now I have some time to morn the loss of my glass half full of water. But I am tuff! Back in 1989 when I was told that me and my 37 t cells would be dead in probably less than a year. I was like, not now, not when my life of being bullied and harassed was coming to an end with the comrodery and support of the gay community. Turns out I was not ugly, just that my hair, my cloths, my attitude all just needed a little adjustment. And 6 years later they came out with the first protease inhibitors came and people just kind of stopped dying. However my first love did not make it in time to be saved by the drugs that ultimately saved my life. Where did that come from. Sorry, I have not looked at any stats yet but my surgeon put my five year at 10-20% . I will soon be looking for clinical trails, some anti cancer miracle tree bark.< JOKE. I know that they held back on the radiation and I have had only Erbitux. No citplatsin because at the time they were a little worried about my blood counts. But maybe now that is a possibility. I know they want to cut me again. And I know I don't want to be cut. Compounded by the fact that this surgery was basically a huge biopsy in a cures clothing. I don't want to have to respond to a bunch of doctors by offering my flesh unto them. But I will look at everything they put in front of me. And this time I wont be as shy about my own care, my own life! Sorry for the ramble but please excuse me I have a signature to update. Thank you for listening.( If in fact you are still reading.)

Yes, you are very tuff! My very best wishes to you.

I'm sorry for your troubles, past and present. Where is the positive margin, tonsil or lymph node. You're a fighter, like me, so this is just another hurdle to jump, and is still treatable. 37 T-cells wete low then, and you were lucky, and the viral load can be more significant. I'm from nyc and know of many who lost this battle. Anyway, positive margins doesn't necessarily mean cancer will return, but high chances it will between 30-50%, and to have locoregional control, surgery with Chemoradiation or chemoradiation alone is necessary. Previously radiated patients have a better chance with salvage surgery if done with radiation, however, there are more toxicities, and complications with this, but may be possible. Maybe look into Brachtherapy or similar like HD-IORT, which I'm having, which has better control, and can be done safely for a cure. Basically they will respect the Tumor, if possible, do radiation during surgery, probably with a pec or free flap, so they then can do more Chemoradiation. This is really my 8th recurrence, and went through multiple treatments, surgeries, and will be my 2nd IORT, and still going for a cure. If interested, maybe your doctors can contact mine, who is an expert with this, radiation, and the head and neck, and may make suggestions. If going to NYC you can go there or let you know of the places in Ca doing this or any other location since you can always stay at one of the 26 hope lodges in the US for free.

I saw a clinical phase one trial just starting with a vaccine for patients with HIV, HPV positive, who failed treatment, and believe it is to reduce the HPV, and recurrences. I'll try to find it tomorrow.

Rest up, and good luck with the doctor. What one doctor may not treat, another one may with their training and experience. See you at McDonald's

Wow thank you for the reply, It looks like you just started chemo and rads. hope that it is going ok for you.

Shawn U.

Shawn, I'm In standby mode waiting for surgery. with radiation during surgery, on October 16th. No chemo planned this time around or additional radiation afterwards, so far.

hey PaulB, 8 recurrences is mind blowing.(I plan on getting more hip to the lingo here.)How far down do you have to reach to get through that? Well I count myself lucky to have met you here. I am very interested in the trial you were referring to. As for the positive margin I am not sure. But he said that the tonsil did have cancer in its bed. as far as the nodes go he said that they found cancer in the lympatic system. And prior to the dissection I had a lot of lymph fluid that would pool in my neck overnight. So if I slept on my right side I would wake with a huge pool of lose lymph that would take sevral hours for gravity to even things out. So you think it may be feasible to do Chemoradiation alone? I will ask to see my last set of labs. and hope that my viral load and t cells are still going up from the first round of radiation/Erbitux. I think I mentioned that I only have Kaiser P.

Don't worry, I didn't know anything four years ago, and you probably know more than I did at this stage. I heard of Kaiser through the blogs, and sounds like you have to stay within their network? I thought I heard of someone who was in a remote area was able to get treated outside the network, maybe if their treatment couldnt be offered in-network. Chemoradiation is possible. It depends on the area, dose limitations to vital structures, previous amount of radiation, so they may be able to fit in more. Usually anything above 75Gy has unacceptsble toxicities, as far as the neck and neck, but there are ways to do more. See what your doctor has to say, and discuss it. In some cases, flaps are put in, after resecting all cancer, so you can have more radiation, even brachytherapy for a boost, then Chemoradiation. There is stereostatic radio surgery like Cyberknife, others similar delivery systems. Chemo's can be low dose Taxtore, Erbitux, maybe Carboplatin, others that have less side effects, hardship on the kideneys, and are more tolerable

Try to get copies of everything, not only for yourself, future reference, to keep tract, but may need for another doctor also in or out of your network.

This trial is not for head and neck cancer per say, but mentions this drug as a treatment for it. I don't know if it's already in use for HN or that is it hopefull.

http://www.isa-pharma.com/2013/09/i...ents-anal-intraepithelial-neoplasia-ain/

Here is another article explaining more, and mentioning head and neck cancer, T-cells.

http://www.bionity.com/en/news/1440...mprove-immunotherapy-against-cancer.html

Good luck.

Shawn, yes you are strong, yes you are a fighter. You do know a lot about your body and more about cancer now than ever in your life.

May the BigMacAttack grab you and take you to places you have never known!

The only encouragement I would like to give you is...NEVER GIVE UP!!! You have out in so much effort to just be here today. Keep it up.

Ed

hey there Paul, Kaiser is quick to out source to other facilities and will utilize medical staff from said facilities. This holds true as long as they stand to save a buck or two. I do not know how many jiggawatts they used on me.(I didn't ask). So don't ask don't know. But I can let you know that when I speak of them holding back the rads. I had a peg inserted before hand. So as not to potentially disrupt the Rads. I would have had no real problem if the peg was left where pegs get pegged. Most importantly not in me. And as far as taste loss, it was all of about 1 full month of either mild to moderate pain and got the peg out so quickly. The fact that I never lost the ability to eat and drink could be construed as a hint that they were holding back. The IMRT beam had only taken hair from the back of my ear going down in a v shape pattern that made me look like the 80s threw up one of its hair styles and it landed squarely on my head. The only real Rad. burn I endured was on the left back side of my tongue. So it was either a very normal dose with the majority of beams going logically through the left side of tongue to the tumor. with less causation to surrounding tissues. Or a much lower dose where as even the main beams did not do full damage seen in majority of patients keeping in mind that DR. Rachale C. had overcompensated for my compromised immunity besause she did not want me to bleed out all over hear nice and clean facility. She had told me that she has the best overall treatment stats in all of the land. Acually she said in southern California. And the fact that Erbitux had been doing great in giving the one two punch. well one of the one two punches. how did the Erbitux treat you? Did you get the rash that is indicative of the treatments effectiveness? Mine got so bad that they had to skip two treatments. Just waiting for the rash to subside. and it did and it did not show up again.(I never thought that I would ever buy another bottle of Oxy anything.) I had acne that decided to plauge me until I was in the early years of my second decade. So it is most def something that I will gather all essential papers on what dose of Rad. was actually given. I am so sorry. about the rant. I still don't think I have processed the implications of yesterdays disturbing news. But I hope that at least now I can get to doing something. other than think all day. Thank you really Paulb along with everyone who has posted. The wealth of experience here is staggering. Talk to you soon ----Shawn U.

You don't have to let me know the dosage, was just curious. There is more to it than just the dosage amount, including surface area, fractions, etc, and have to be wizard to figure it all out, and I hate math lol. I got the rash, wasn't that bad on my face, and took minocycline, but the rest of the body had pimples that were itchy like on the top of my head, arms, legs, and back, for a few months. I caught an eye infection, probably with Taxotere, but Erbitux can cause them too. I was worried cause I'm blind in one eye already, either directly or indirectly from chemo. My Opthomologist gave me corticosteroid cream to put on it, and cleared.

There is no guarantee any treatment will work. It's not geared individually, yet, so it's the same for everyone, although we are all different. Erbitux may not work in 5% percent in head and neck cancer. It's more in colon cancer where it's 40% due to kras gene mutation, which they test for before Tx, and if they have the mutation, Erbtitux is not given. There is no such test for head and neck cancer. Many other factors are involved too. Just take it one day at a time, and see what the doctors have say is the next step, but do educate yourself, but don't dwell on what you could have, should have, would have done. Even if everything was perfect, things happen beyond you and your doctors control.

Good luck.

Thank you for the information, I will talk to you soon.


Shawn U.