Hi Seth...crap....I am sorry to hear about this recurrence. Thank you for posting the link to the drug trial; glad to see it's being tried in UK and hoping that you get in. I am wishing for all the best for you and your family. Please keep us posted.

Mary

Hello, Seth.

I am so very sorry to hear this bad news. It was a big, happy "Wow!" after your first PET, and now this. This disease is incredible at times and just leaves you saying "how can this happen in such a short period of time?".

I am so happy and have good thoughts about this drug trial. Here's to hoping that it leads to a cure for you and many more to come!

I wish you all the luck the world has to offer and the very best medical care.

Blessings to you and your family. I hope to hear good news from you very soon.

Love in OCF,
Kerri

Hi guys,

To the several questions; no confirmatory biopsies yet, I have a question out to my Oncologist as to the latest thoughts on the one spot on my bowel (as opposed to the numerous spots around my left pleura). To my understanding I've had my lifetime dose of radiation; no more rads for me, at least not in this area.

One interesting twist to all of this is that in order to participate in the trial it must be handled as an NHS (National Health Service - UK public health program) case (I've so far had my treatments under private insurance) so administratively there is a change (although my oncologist will continue to follow me, and is happy to meet as and when), and under the trial I will have a 'tumour' person among many others. At this point they are trying to determine if the biopsy that was collected earlier this year of the single tumour between my left lung and aorta will suffice for 'typing' as well as they will map the genetic blah blah blah as part of this study. I figure if there is any doubt, or if that sample is inadequate, they'll be taking more, and of course I'm fine with this. I do want them to be as certain as possible that this 'targeted' therapy is aimed at the correct target!

Early days as we say over here. All of this (learning I'm a likely candidate for the trial) happened just this past Friday, it's now Monday morning. The Season has begun, multiple holiday lunches and parties this week already, and all the while trying to work and waiting for my phone to ring with some or other instruction from the medicos. Never a dull moment around here!

Cheers,

-Seth

In my travels, I have had the privileged to have met 3 OC patients who have all gone thru rads 3 times. The docs tell us all with only one round of rads we have had our lifetime max. With enough time between recurrences and slightly different locations of the recurring tumors, my 3 friends have done rads 3 times all being treated at CCCs. Just an example of how individual each patient really is, 3 rounds of rads has been done in certain cases here in the US. My intent is not to second guess your doctors, as I do see in your signature you have done rads twice. Its simply to let you know 3 times has been done before to a few patients that I know both from the OCF forum and in person. Here in the US there is also cyberknife, brachytherapy, tomotherapy and the davinci robot as other tools in some locations. Your study sounds very promising, I hope it works! Thank you for being willing to give it a try, this helps all future OC patients in finding another method of treating this awful beast.

Best wishes!

I had radiation 4 times to the same area, 2 Times IMRT at 70Gy, 50Gy, and 2 times HD-IORT, at 12Gy, and 10Gy, which is equivalent to 3-4x that amount in IMRT dosage, and going for my 5th radiation treatmeng with Proton Therapy with 50Gy in a few weeks, to the same area.

Good luck.

Hi everybody.

Okay okay, I get it, never say never to more radiation. In my case, here in the UK, they don't want to consider more rads for me, that's all. My oncologist prefers the option to get me into the trial of GDC-0980.

I've not yet heard more about that. Will let you know as and when. Otherwise doing well. Dull ache on 'that side' but that's nothing new. This week is rather full of Holiday lunches and parties and such, so that's nice.

Enjoy those holiday lunches and gatherings, Seth! Wishing you all the best.

Yes... I agree. Enjoy the holidays and definitely do give the trial a big go.

Rads is funny I think it is a social medicine situation. They are more cautions in Canada too. In the states it seems they will fry you until you are well done and then bring out the flame thrower for more...

whatever works I say.
hugs.

Hi
I agree enjoy the parties etc and get through the trial. I'm in uk also but my treatment was at charring cross with mr Clarke. Good luck and hang tough you will get there Seth big hugs
Jayne x

Once again I've been absent. Last hurdle to my trial participation is a colonoscopy tomorrow morning to investigate one unexplained PET 'hot spot' down low on the right. If that turns out to be a new different cancer it could mean the trial is not for me. It could also turn out to be nothing, or my same SCC having gone to an unusual place. All other tests have gone well and nothing identified to keep me out of the trial.

The Holiday Season has been good; an early week in Canada to visit the in-laws and other family and friends, then Christmas back local to London.

Today I met with a local Hospice on the advice of my GP, I gather that hospice is not only for when you're making your exit; they also support people in many other contexts. It was an amazing facility and service, and is about two miles from home.

Jayne, was your doctor Mr. Peter Clarke? Tall, dark hair? If so, he did my neck surgery when I first came to London, but this was at the Royal Marsden in Chelsea. At first my monitoring was shared between Mr Clarke and Proff Harrington, but when my cancer returned Kevin Harrington took over for my further treatment.

Cheers,

-Seth