So glad you had a good holiday... hopefully the colon issue is nothing... maybe an ulceration or something equally as unimportant.

With regards to your lung mets. Are you sure - have they biopsied one of the spots?

another of our members here had a scare a bit ago with something similar - she had lung spots for a bit and they were certain it was mets - (she still smokes) - they were saying the mets were too small to biopsy and she decided to forgo the chemo offered, so they decided to monitor her instead.

A few check ups later - her spots are resolving. It's important to know for sure if it is cancer.

If it is best of luck with the trial and hope you get in.

hugs

Hi Cheryl,

They've not biopsied it yet, but will on the day I start the trial, so worst case if it was miraculously not cancer I would only have had one dose of the drug before this would be known.

But I'm not *that* optimistic! My PET scan was, shall we say, fairly dramatic, showing dark 'sugar uptake' in about ten areas around the *outside* of my left lung, in the pleural lining. And I do have some pain that fits the notion of something bad going on in there, although this is minor at this point. They can't think what else it could possibly be. That said, it's not changed much in the subsequent 6 weeks (baseline PET scan for the trial) which is also a bit of a surprise (in a good way, I think).

All will become clear in time.

Or not.

But hey.

Thank you for sharing the other friend's story - very interesting.

-Seth

Hi Seth-
Best of luck with the colonoscopy (there's a sentence that I don't believe I have ever written before). I hope you get some pleasant sleepy gas for that. (my husband was quite amusing upon awakening from the bronchoscope Monday; kept asking if we were in Chicago which made me at least remind him that we need to make a trip there, preferably in the spring).

All my fingers are crossed for clear sailing after tomorrow and into that trial. Thank you so much for updating us. I know there are many, many here rooting for you--on all sides of the various *ponds* (asterisks versus " " are in your honor as that is how your posts appear)

Best,
Mary

Ok! Time for an update.

The colonoscopy went fine (that was interesting......), they found a small 12mm nodule in an odd location and it didn't look like 'normal' colon cancer, they took a biopsy, and confirmed that it is the same SCC that I have had all along. This is a somewhat surprising result (to see a head/neck cancer appear in this location), but there you have it. This could be easily removed by 'keyhole surgery' but for now they've chosen to hold that option in reserve.

The good news is this didn't kick me out of the trial, and I started GDC-0980 on 15 January with a single dose and lots of monitoring and tests, this went fine, and then a week later, on 22 January I started taking it daily.

So far so good! I've had no side-effects to note (other than feeling hungry due to the fasting requirements; one hour before and two hours after each dose).

Maybe a slight twinge of nausea, but not even sure about that, and this could be simply the fasting.

Time will tell if side effects come on, and if this drug helps me, but so far so good!

-Seth

Thanks for sharing Seth, and showing a connection between the two areas, which was thought possible, but not sure if I ever read such a case, and changes my thoughts about getting a colonoscopy. Good luck with the rest of the trial, and keep us updated.

After-my-husband-was-diagnosed-with-cancer-of-the-vocal-cord-the-team-decided-on-a-colonoscopy-and-upper-GI.Since-he-never-smoked-or-drank-and-is-non-HPV-they-wondered-if-it-had-originated-somewhere-else.Thankfully-no,he-just-was-the-lucky-one-to-have-a-rare-cancer-with-less-than-50-cases-ever-in-the-world.

Good luck Seth... Did they delay the colon decision so they could start you on the chemo?

Hi Cheryl,

That's a fair question. I figure, if I have SCC throughout the pleural lining all around my left lung, then what's the rush in surgically removing one tiny nodule of SCC in my colon? Remember, it's not 'colon cancer' so any SOP likely doesn't apply. So in a sense, yes, I figure they didn't want to delay my start of the trial by doing a surgery, or perhaps they just don't see any advantage to performing a surgery at this time (which I think is more likely the reality).

-Seth

Terrib,
I also was diagnosed with SCC of vocal cord with NO risks either, HPV-, they could only come up with reflux being the cause? Wonder if your husband had an issue with reflux. Don't want to hijack the thread but really curious if he did. Mine was Stage T1N0M0 for which I'm thankful, will be going on 2 years, so holding my breath as we all do! Sorry for the intrusion!
Mrs. Sarge

My father in law is a wine drinker, and has had acid reflux for years.... Dx'd this fall with esophageal cancer - the three precursors for esophageal cancer - alcohol consumption - (wine is a staple as he's italian and it is lifestyle - he's not a roaring drunk, he had likely half a litre to a litre daily over lunch and dinner and was perfectly sober) - (check!) a history of acid reflux (check!)- and often older black males - (he's older and male but not black) acid reflux depending on the length of time you've had it can definitely cause chronic irritation and cell change.

Hugs