Hellion,

I am so sorry to hear the crap news. This awful disease is unfair and cruel. I am praying it not cancer and just an infection. Remember, its not cancer until it proven. Take it one day at a time my freind.

Hellion,
I wish I could think of something helpful to say. You are a feisty person, and I think you are going to find the determination to enjoy the holidays. You will know more on Boxing Day - but in the meantime, live in the moment, and enjoy the beauty life offers. Will be thinking about you and yours.
Maria

Well thank you also, hockeydad and Maria. I am still hopeful, and of course I am hopeful for what we might find out at our University hospital as well should the worst news materialize.

For now I intend to enjoy my time, try not to worry until we know more and then decide what we can do from the options we're presented when the time comes.

Thank you all!

Happy Holidays

The Hellion

So as an update to anyone following, I have received the readings on my CT with contrast and there is good news and bad. The good news is, it appears the original site is looking good so the reading there may not be a recurrence at the site. The bad news is, the distant metastasis to the lungs is confirmed. They are hoping for a biopsy if they can safely reach it.

I consulted with our local University Hospital and it appears I may be a good candidate for some clinical trials. The one the research doctor is recommending to start (as he believes we have some time before things go critical) is comparing Cetuximab to Cetuximab + BYI-117 (a protein inhibitor). I would first receive Cetuximab and then add the other drug if I am not responding well enough to the Cetuximab. As my tumor is "low volume" he feels this study (in Phase II) would be a good choice.

The second choice would be to do a phase II platinum +5FU + Cetuximab + some kind of immune-therapy but he thinks that might be too strong. As this is my life, my tumor I am uncomfortable with terms like "low volume" and "too strong" - my instinct is to go in heavy rather than limp in. I need him to choose his words VERY carefully at our next meeting.

I could then look at some second and third line options down the road (in a few months, a year? not sure there).

My question is, has anyone any experience with these? I've obviously done a lot of reading and discovered that Cetuximab and the BYI719 product have some potential but that these are relatively small gains - adding perhaps a few months up to a year or maybe two. These are nice, don't get me wrong, but they do come with some side-effects and risks.

If anyone has any thoughts or opinions, I'll be happy to read them.

Thanks,

The Hellion

Hellion, I'm really sorry that you are in the same boat as we are. Maybe you would like to ask your doctor what kind of outcomes he has got for each option so far. Even for John's phase 1 trial, the doctor was able to tell us how many patients with head and neck cancers have seen the tumours shrinking and how many have had tumour reduction. That may help in making a decision.

Gloria,

Thanks for that advice -- it's on our list of questions. I think of you and your husband often as I know you are going through the same thing. I hope to consult with the research doc on Friday as he has a slot open for a trial that will close soon. I think that is the BYL-117 trial, but it gets a little confusing.

Thank you!

The Hellion

Hellion I am sorry. I am not sure how they confirmed the mets without a biopsy but I guess they have a good inkling. Best of luck and fight fight fight!

I keep mixing up the numbers for these studies. It's BYL-719, not 117 or 119. No head for numbers here.

Cheryl,

They have confirmed the growth and, because biopsy is so risky, they are using the percentages to assume mets from the original source. If they can't biopsy (and currently my ENT and the pulmonologist they brought in don't think they can) then we will be proceeding under the assumption. It's not my ideal methodology, but we recognize their model is probably correct.

Either way, it appears to have doubled in size form ~1 cm to 2cm in 6 weeks so it's definitely not going away.

Thanks!

The Hellion

May I ask the people with mets to lungs, were there any hot spots in the lungs on the original PET? Did you feel any systems? I hope these new treatments show promise for you! I can get lost just reading research articles on H&N cancers. Being here makes me want to learn as much as I can about what others are going through.

Hellion, I'm not happy to read your update either.
Is there a possibility that this could be resected?
I'm presuming that you are at a CCC? Have you considered getting another opinion at a CCC?
I wish you well and trust that your docs will give you options.
Tammy