Hellion, I am not happy with your news, either. I have been looking at the radioactive lysteria monocytogene trials and they are soecifically looking at head and neck cancer but only HPV+. There has been some good results with pancreatic cancer.

"A new recombinant L monocytogenes vaccine, Lm-ActA-E7, was designed by transforming an attenuated Listeria strain with an E7 expression cassette. The cassette consists of the HPV-16 E7 sequence fused to the Listeria protein ActA. The resultant strain of bacteria secretes E7 antigen as a fusion protein with ActA."

It might be worth asking. Also, if you recall the blog of Leroy Seevers, a news correspondent, he had radio frequency ablation to remove tumors in his lung, although it wasn't squamous cell. The common thread has been slow growing cancers.

Best wishes for you.

I'm just gutted by this news. Mate I am so sorry I missed this thread until your message today. Cancer brothers we are, started the same treatment on the same day, went through so much together. So many messages and posts, helping each other out.

You're in my prayers brother, and will be every day.

tamvonk, Uptown

I'm working with my University Hospital now in addition to my CCC -- it's reportedly one of the finest research universities in the country, so I have THAT going for me.

Nothing has been decided yet. The good news is it's "low volume" and "growing moderately" so they are taking a little time to piece together advice and recommendations. The research doctor (yes, he's a salesman) wants me to start a bit lighter and stick to biological agents to start --- he says there is time for the bigger guns if these (Cetuximab and then adding an experimental blocking agent) don't show good promise. We know from my previous treatment that I am not a great candidate for Cisplatin.

I hope he's right.

As I said in an earlier post, my life, my tumor, I kind of want the Minuteman Missile approach, but that may just reduce my QoL for very, very little gain anyway. What I need, what all of us need, is a wonder drug! We actually have pills to cure restless leg syndrome but this continues to beat us?

Yeah, cheap shot, I know, but still... I can't help but think this is more important -- I know it is to me (and I know they ARE researching this every day -- I'm just feeling a little bit bitey today).

So yeah, we're gathering a bit more data, hoping they can do a biopsy (find that out tonight) and that either way they can recommend some experimentals that might actually make a meaningful difference. I'm not ready to quit yet, so I'm pretty much insistent they come up with something. Thank you all for your support, advice and words of encouragement.

The Hellion

Oz,

Thanks, mate. We're not beaten yet, my brother down under! Thanks for being there, my friend!

The Hellion

Hellion, John had to have two lung biopsies when he entered the drug trial. It was a condition for being accepted. As he had one lesion in the pleura, it was the one that the doctors used. All the other lesions were too deep.

As the doctor explained it to us, "It is like pricking a balloon with a sharp needle and then withdrawing the needle without the balloon collapsing or losing too much of the air inside it." John was given local anaesthesia and not put under.

I know the mantra is, "It is not cancer until the biopsy says so." However, unlike biopsies in other parts of the body, lung biopsies are far more tricky and risky.

When John was initially diagnosed, we were told that the first place the cancer would spread to, if it was going to spread, would be the lungs. When the metastases were found, his CT scan report said that the lesion "had the typical seed-like appearance." That was when the doctors knew it was cancer.

By the way, when John got taxol and carboplatin recently, he responded much better than when he had cisplatin. So, don't let that bother you too much. Do remember, though, even with trial drugs, you will get side effects, many of which are like chemo side effects.

Hellion,

I want to suggest that you consider looking at the clinical trials going on at NIH. There are immunotherapy trials for metastatic cancer like:

https://clinicaltrials.gov/ct2/show/NCT01967823?term=NIH+immunotherapy&rank=6

There are also HPV immunotherapy trials going on too:

https://clinicaltrials.gov/ct2/show/NCT01585428?term=NIH+immunotherapy&rank=3

Another thought is to have your tumor sequenced and find out what the mutations are and then choose a drug or clinical trial that targets your tumor's particular mutation. We paid for the cost of this sequencing out of pocket as insurance won't cover it. It ran about $5k and the outfit we used was Foundation One.

I have a friend who has metastatic melanoma and was given 3-6mos to live and is still going at 4.5yrs. There is still cancer there but he's stable and enjoying life. And I read about people in the Washington Post who are clean. They did these NIH immunotherapy trials and were lucky.
Good Luck.

Thinking of you every day brother.

Every day.

So...

For those following, there have been a few changes. The first is, a second tumor popped up which was easier to reach than the first and thus they were able to perform a biopsy which confirmed it is SCC cancer. I have been working with my local university and will hopefully be beginning the Cetuximab + BYL719 study this week or next.

This experimental is a protein inhibitor which makes it more difficult for some cancers to grow -- this is considered a good candidate cancer for the study. My Oncologist a the university believes this is a good 1st line and that he would have some 2nd or 3rd line options, some of which involve some immunotherapy experiments, when that time comes before we have to go with the SoC stuff.

None of these are considered curative, but there is hope they can greatly shrink the tumors and inhibit their growth considerably thereby buying decent time with a good QoL.

Wish me luck. I'll post more when I have more.

Thanks,

The Hellion

That is good news: a plan of action.

Thinking of you.