Seth,

You have been through so much and your sharing has allowed others to benefit your experience - especially, about why treatments work for one person but not for another due to mutations. I imagine all of us hope that the treatments we have endured will continue to refine and inform treatments in the future so that there is some benefit to others. I hope that this new clinical trial helps you. I have a friend who took 5 fu in the early stages of clinical trials many years ago and she survived so best of luck to you! - Sophie H.

Yes that's him! I'm still being seen by him he makes me feel safe. I hope all your news is good and you are going to do the trial. You are in good hands.
Big hugs

Jayne x

Hoping some good news comes through for you Seth. I have this theory of invincibility for cyclists over cancer.

Best wishes,
John

Hello, and sorry for the 6 weeks silence, and thank you for all of the encouragement.

It is now 30 September 2014.

First the good. The fluid around my heart (pericardial effusion) *and* oedema (fluid retention between my torso and feet) have all gone away. In fact at my last cardiology follow up the Dr said of my ECHO that it was as he would expect his own heart to look. My Oncology team also spoke with a cardiology person and got approval to switch me off of the Amiodarone (yay!) and onto a much less-frightening heart date reducer called Bisoprolol Fumarate. My heart seems to be fine now.

Alas, shortly after my last, long post, my breathing became very short indeed. They tried giving me a red blood cell transfusion as I was badly anaemic, but this extra fluid seems to have further squeezed my lungs off and they took me into hospital and drained 2 full litres of fluid out of the relatively new *right* side pleural effusion (note that my cancer and the initial pleural effusions are on the left side). The drain did it's job in about an hour but they kept me in for several nights to be sure it wouldn't produce more before removing it and sending me home. This was ultimately a good thing as my breathing was now much improved.

Alas, again, my blood test numbers for several elements were now too far out for any trial, let alone any further treatment. This was a bad moment, because until they could figure out why those numbers were so far out, there was nothing they could offer to treat my cancer!

In time, perhaps due to improved breathing, perhaps due to getting off of the Amiodarone, who knows, those numbers came down enough that Kevin Harrington offered me a course of traditional chemotherapy (I was still out of line for the ATR-inhibitor trial on one blood test element, though it was slowly reducing).

So! 20 days ago I had a round of good ol' Docetaxel and Carboplatin. I gather these are relatively 'old school' chemo drugs, and nobody knows how effective (if at all) these may be for my cancer at this point, but it's a treatment option that a) may buy me some time until something better can be figured out, and b) could put me back into consideration for the Antibody phase 3 trial (which is currently reserved for those who have had a platinum-based chemo within 6 months.

This chemo was, to be British about it, pretty rough. The anti-sickness pre-medication worked well and I had no nausea, but I did have bad broad gut paint and then diarrhea and related cramping. I also naively thought the process would last about three days. But no, more like 8 at least.

At this point my main complaints are mainly shortness of breath (am I anaemic again? is my right side pleural effusion coming back?) and of course, chemo brain. After 9 weeks off work since my heart scare and through first chemo, I put in 4 half-days back at work up until yesterday.

Today I've started the pre-medications, I will go into the hospital to give a blood sample, and I have my second chemo dose tomorrow (1 October). I hope we've learned better how my body responds to this particular chemo. I've also had some very good advice from the Trininty Hospice nurse who makes house calls (basically, between the advice and what we've learned, use more oramorph (within reason) for the gut pain, and use Imodium for the diarrhea at the right time).

Once the dust settles from the second chemo they'll assess me to see if it has had any effect, and then we can decide a next path. More of these chemos? Up to 6 rounds. Or, a trial of some form or other?

My weight is stable at about 133 lbs (60 kg) and I'm very skinny. I've also shaved my head again as my hair is all due to fall out anyway.

So, my options are thinning out, but we carry on.

Good luck everybody.

-Seth

Hi Seth, I think about how you're doing all the time. You and John do seem to be in more or less the same boat. He has had two rounds of taxol and carboplatin and has not been able to have the third because his neutrophils are coming back really slowly and the doctor had to cancel the chemo two weeks in a row. The only good thing is the interventional radiologist is able to schedule him to go in to have another esophageal dilatation (will post about this at some point). It is hard not to be able to see a clear way forward and to be in a holding pattern all the time. I guess one will just have to be philosophical about it.

Lots of luck to you on your second chemo and hope that the gut pain isn't too bad this time. You are always on our minds.

Hey - hopefully this chemo helps. Is there anyway you can have your biopsy tissue tested to see what chemo is most effective against the cancer? hugs.

Thank you Gloria and Vegan.

Vegan, to your question, while I was participating in my trial of GDC-0980 they did sample and study my tumour and concluded it may be a candidate for the ATR-inhibitor trial drug, but alas the version of that that I have ready access to here (there are multiples) is only in very early Stage 1 trial, so if I could get in on it, it would be a very low 'tolerability level' stage of study.

The approach regarding chemo as I understand it is my cancer has already 'survived' the logical chemos to try, so now they're trying what's left. It's not rocket science, I'm afraid. Mine is a second recurrence. There are not enough statistics to apply to my case to be 'scientific' about it. My cancer has shrugged off Cisplatin twice now (that's the Big Gun, I gather).

This combo I'm on now is my very senior-level Oncologist's best guess at what might work, or at least help, while other stuff is getting figured out.

As I understand it, this is the state of the art in my case.

Not a very satisfying answer, no doubt, and if anyone knows better/otherwise I'm all ears.

Mine is metastatic Squamous Cell Carcinoma, positive for the HPV P16 markers (the GDC trial targeted that), with the ATR mutation (meaning the cancer cells can only split/multiply via the ATR pathway.

Once I've survived this second chemo (fingers crossed, and planning to drug the heck out of my symptoms this time), they do a CT and see what they can see. And then we discuss.

At the moment I'm extremely anaemic, I rather wish I had known this sooner and could have had a transfusion sooner. I need to complain more, it would seem. Live and learn, right?

Good night all, from London England (still part of Scotland)

-Seth

Seth, when the MO suggested taxol and carboplatin, she called them "the bread and butter stuff." John can only have 80% of the normal dose as his blood count is so low. The third chemo when it happens on October 14 will be further reduced. I know this will help him deal better with the side effects but I have no idea if remains effective against the cancer. He will have a scan on Oct 17 and I guess at that point we find out.

Once more unto the breach ...

I had six rounds of Docetaxel and Carboplatin in 2008 after my SCC metastasized to my lungs. I had a reduction in tumor size and bought some time to find a clinical trial about which my MO was enthusiastic. That trial with Alimta gave me over a year with success before my tumor grew. Another trial with Avastin gave me another year with success in tumor shrinkage. Since that time I have had pulmo treatments and radiation. My last treatment was in August 2013 and I have NED. The cancer is at bay.

I meant a testing in the states in California (your sample is sent to them they test it against a variety of chemos to see what is effective. As for the anemia... protein and iron my friend. Eat healthfully. hugs and keep on pushing.