Thank you for sharing your updates with us.

I hope that your oncologist has some good things up his sleeve for you.

As I am, you are fortunate to have a great partner in your spouse who no doubt helps keep you going.

Here's too kicking cancer's butt!

Love and strength in OCF,
Kerri

So....

Met with our MO today and I will be demitted from the current trial -- the cancer has gained back everything the trial had won and there is, therefore, no meaningful reason to continue it.

I am eligible for an immuno-therapy trial which would be a 50% chance to receive a phase III immunotherapy drug that works very well when it works, but only works some of the time. the other 50% would be Docetaxin (or however you spell that) with the hope that I could be eligible for a phase I immuno-therapy trial that will begin later in the year.

I am still low volume and he feels there is not any reason to rush in or panic -- he has even given me the option of taking treatment time off and then starting up again in a few months or even more. I'm not really comfortable with that, given the sort of person I am, but I see where he is coming from.

For now, we have a few weeks off while we consider our options and think about what we would like to do. Overall I am still hopeful, I really am, but I am feeling a little bipolar today -- moments of high hopes, moments of despondency. I still can't accept that this can't be beaten, at least into remission, so I am still assuming it's all going to work out!

Meanwhile, I work, we live, we laugh and we cry a bit. I am so lucky to walk through the world with such a wonderful partner -- she's shaken up a bit and feeling a little helpless I think, but I refuse to quit if for no other reason than because I can't imagine walking without her .

Hope everyone else is doing well -- I will update in a few weeks when we have made a decision and are on a new path!!

The Hellion

You are a real hero, Hellion, and I hope you stay "low volume" for a long long time with immunotherapy as a ray of hope for the future.

Dear Hellion,

I am truly sorry that the trial has come to an end, but I am hopeful that you have other possibilities. May those possibilities become wonderful realities!

I admire your positive, fighting spirit. Your words that you use to describe your love of life and family are very touching and well-said. I consider myself to be very fortunate to be with a wonderful partner and family, as well.

I wish you some peace and emotional comfort as you face the coming times.

Keep on truckin'!

Love and hope in OCF,
Kerri

Dear Hellion,

A break gives you time to recover from the treatment and regain your strength. If it is a slow-growing tumour like John's, then a few weeks makes little difference but I am not sure about a few months. There are a lot of immunotherapy trials it seems, so hopefully one of them will work for you. If you are going into a phase 3 trial, you may want to find out if it is a double blind test with a control group and a test group.

Keeping you and your wife on my mind always.

Thank you all, as always, for you well wishes.

I can't imagine doing nothing for very long, even as passive as the entire process unfortunately is for us. We meet with our other MO tomorrow (my actual, not science experiment, MO) and we will get her opinion as well and then make a decision. Probably we will be going with the study -- there aren't currently a lot of better options. Should it fail, however, it is another window closed and I will admit that that frightens me a bit. It's starting to feel a little bit claustrophobic in here.

The break will be nice. Generally the last study wasn't too difficult on me, but I am tired and I won't be sorry to let my skin heal up a bit from the Cetuximab. It wasn't terrible, but my skin is very dry and I have lots of annoying little cracks and splits on me fingers and feet.

The next round will probably be more difficult so it is best to gather strength I expect.

I will let you all know where we are when we know more!!

Thank you all for your support!

The Hellion

Hi Hellion,

Our MO who is in charge of drug development at our hospital says, 'there is always something.' She refers, of course to trial drugs. If John's trial drug doesn't work for him this time, the next trial she has in mind requires the patient to have had three lines of treatment-- three previous chemo treatments. So john does not even qualify for that unless the present trial doesn't work for him. One window closes but another opens, you see.

The most important thing I feel is to keep up your weight and stay in reasonably good shape for the next trial. Please don't let things get you down too much.

Best of luck... and thinking of you. I am like you I tend to want to move on something... waiting around is not my way of doing things... ;o)

hugs

OK,

So it's been, well, about 6 or 7 weeks it looks like, since I updated. It has been eventful but if I'm honest, the real reason I have been delayed is I have been trying to pretend I'm not a cancer patient for a bit, whilst I still can!

So, by way of update. When we left off I had been demitted from my first trial, and we were considering what to do for the next trial -- waiting a bit, doing nothing, standard of care or an immunotherapy trial. We decided on the immunotherapy trial using Pembrolizumab (I think that's the spelling) - a PD-1 inhibitor that has been approved for use with some cancers and is being studied for use in head-and-neck cancer. I had a 50% chance of getting the trial and a 50% chance of getting the standard chemo but to do so I had to get another biopsy.

The biopsy was relatively uneventful, but in performing it, the pulmonologist noted that one of the tumors has begun to get nearer my airway -- my MO thinks this may be contributing to an aggravating cough I've had the last month -- I'm hoping it's just an aggravating cough. Either way, he changed his mind and decided we need to move quickly and so two weeks ago we started the trial and I was selected into the experimental group which is good news -- I am now getting an infusion every three weeks for one of the most exciting drugs in the cancer-fighting game. Unfortunately, though it works quite well when it works, it's about a 25-30% chance that it will work. We are, of course, hopeful that I finally win a damned dice roll.

Side effects are, after one infusion, non-existent except for the possible chance that I have some low grade flu-like symptoms on some days -- I'm not even sure I've had that yet, though, since that could just be feeling a bit tired or achy on a given day. At any rate, I get my second infusion this Friday and a scan in about 6 or 7 weeks, I think.

So, I am alive, as well as can be expected and hopeful for the new drug. Should it not work, however, I am beginning to think we may be running our of options -- for now, however, I'm trying quite hard not to think about that.

My wife continues to support me, drive me around, sit through lots of waiting rooms and generally keep my spirits up. Generally, I am maintaining what I think is a good attitude, but I must confess I have good days and bad days. As we all know, this sucks.

I hope everyone is doing as well as can be expected -- Now I'm on a new trial, I will try to keep this better updated.

Tidy.

The Hellion

Pembrolizumab sounds exciting and I'm crossing my fingers that it will work for you. I know it's hard to keep that good attitude up although in itself a good attitude helps you cope. You and your wife are doing admirably.

We could write a book about waiting rooms, couldn't we?

The very best of wishes.