Hi Kelly,

Remember, it's not cancer till it's confirmed. Your doc is just being thorough right now. This means you are in good hands, so just breathe..... You'll get to the bottom of this infection issue and resolve it! I have faith. Good luck!!! (luck always helps! :-))

Hi Kelly, sorry about what you are going through. You're in my prayers.

The Biopsy results came in and its positive for cancer.

I am concidering a trial involving a viral injection (herpes)that trains the imune system to kill the cancer. This one originates in Japan and is a Phase 1 trial so it is bleeding edge. Has anyone heard of this trial? Brian?

The alternative is one more round of cyberknife but with the necrosis I am already suffering from I do not know if it is worth it. I can also look at chemo.

I spoke with the doctor running the viral study and am waiting to get calls back from the RO and MO regarding the other treatment options.

I'll keep updating as info arrives.

I'm very sorry for the news, Kelly. Seek out all the options you can, 2nd, 3rd opinions. I heard of viral therapy, viruses being used a Trojan horse to get into the tumor cell, maybe with another antigen agent, and able to kill it, when other therapies may not. I hope you find something. Good luck with the doctors.

Kelly,
Very sorry to hear. God be with you.
Don

the problem with the trial is if it doesn't work then you're behind the eight all with other treatments.. What are the responses in the study? Sorry and crossing all digits chemo is the one thing that would concern me as historically its not curative. Hugs

Cheryl is right. I think phase one is to see the limiting dose toxicity of the drug. My doctor said they do not do phase one trials, maybe phase two.

The single dose toxicity side of the study is done. They are now moving to the three dose stage where they do a full dose, then another full dose 30 days later and then a half dose 15 days after that. They would scan at the end of the first 30 days to asses efficacy. If no or little change I can move on to radiation or chemo but will have lost time.

I would now be trying radiation number 4. I may be a candidate for one additional radiation treatment but I think it would only give me a bit more time. They have had some success even this far out but the doctor said it was very, very rare.

Chemo does not seem to have made any huge leaps of late. I would still be buying time but I also have to consider quality of life. The radiation comes with immediate and permanent QOL issues. Chemo comes with immediate QOL issues that could extend my final days but in misery.

At this point I have resigned myself to the idea that this is and end of life scenario. Radiation would make that time miserable. The right chemo (if effective) could give me some extra time with some quality of life but it would have to be with limited side effects. I would rather spend less quality time than more miserable time.

The viral trial is the hail marry play. Plus I can add to the scientific understanding of this line of treatment long after I�m gone. Also, I have an option of last chance chemo or radiation if it fails.

Right now those are the three that are in front of me. I have some time to look around but can say that I have been to a number of CCC�s already. I would only be seeking more hail marry type solutions from trials that might take me. A very small pool of possible choices.

Only you know what is best for you, Kelly. You certainly researched all options, and are on top of your current treatment plan, and plan B scenarios. I know options are limited, with the amount of radiation you had, 3 times. Hopefully whatever therapy you have, stabilizes it. The only other suggestion I can offer is IORT, Intraoperative radiation therapy, following dissection, which I had, with a single high dose of radiation delivered by radiation probes, directly, precisly on the tumor site, cormformed to the tumor, and other vital areas protected by lead shield, and often done in irradiated areas in the mouth, oropharynx, neck, but don't know if this is possible, which is performed at a few places. I wish I could offer more help.

I am so sorry to hear your news, Kelly, but let me say one thing: If all of the doctors I have seen knew 1/4 of the things you know and researched, I would respect them and be confident of their opinions/solutions. That is not the experience I have had and I would definitely "get out of Dodge" if I had a recurrence. I know this doesn't help your situation, but you are one heck of a guy, and I pray that YOU make the right decisions and you survive. I will keep watching for your updates, and am making notes, just in case.

julieann