So, almost three years since the end of my treatment for SCC of the tonsil in Canada, I've just learned I have not so much a recurrence as a metastasis. Yep, same cancer (genotyped) has appeared on the inside edge of my left lung (lymph system, very close to my aorta) and I start chemo here in London tomorrow, all of 13 days since diagnosis. Cisplatin one night then 4 days of 5FU. Three 3-week cycles, then some radiation to polish it off, if all goes well. They'll keep me in the hospital for each 5-day drip.

I'm over the scared stage. This treatment is not expected to be as hard as last time. I have the best of care at a world-class cancer hospital (The Royal Marsden), gold-plated private medical insurance (on top of what the NHS offers), excellent support of family, friends and colleagues.

It's an instant Stage 4c due to the metastasis, is incredibly rare to the point that they don't really have viable statistics to refer to, and means I'll be in 'monitoring' for the rest of my life until they figure something new out. On the plus side, since it is the same cancer and has been most of three years from treatment, all indications are that it should be a 'soft' cancer, and responsive to treatment.

Not pretending this is going to be a walk in the park, but I think I know what I'm in for, and it almost cannot possibly be as hard as last time, down to location and treatment plan (chemo-based with radiation polish and targeting my chest rather than my face/throat, rather than radiation-based with chemo enhancement, targeting my face and throat!).

Looking back, I had a little pinchy pain 'deep in my left pecktoral muscle' some time late in 2012, which went away, then early in the new year this came back and got worse the next day, and sort of moved to the back of my shoulder. That was odd, and I couldn't really explain it, so saw my GP, who diagnosed likely viral pleurisy, which would run its course in 4-6 weeks. I also happened to see my Oncologist, who only because he could, and out of an excess of caution, ordered up a CT scan. Well, the CT scan showed a 'suspicious shadow' in my left lung, and the only thing for it was a needle biopsy of my left lung through my ribs (that was interesting), and a week later I learned that it is in fact a return of my original cancer, this being very very rare indeed, but not much of a doubt about it. Lucky me!

I actually feel fine at the moment, physical symptoms have in fact settled down to a minor ache in there if I take a deep breath, which if I didn't know what it was, wouldn't be causing me much concern. I may sing a different tune in a few weeks, and early summer is likely to be the worst, but only time will tell.

Emotionally I'm over the scared stage, the only difficult part is having to tell someone and seeing their reaction (that's very emotional). But for myself, oh well, lets get 'er done!

Be well, everybody!

-Seth

Seth, Im very sorry you are going thru this!!! Its bad enough doing it once but twice is just horrible!

Do your best to think positive and stay busy to keep your mind from worrying too much. At least you already know the medical jargon and all that goes along with being a cancer patient. Its much easier getting thru this again when you already have your medical team in place.

Best wishes with everything!!!

HI, Seth,

I wish you the best with your treatment. You have a great attitude [quote][/quote]But for myself, oh well, lets get 'er done!
[quote][/quote]

Your post illustrates the importance of when in doubt, check it out. Good thing you are so proactive in your own healthcare. Hang in there!

Anita

Hugs - and so sorry - so glad they have a plan in place. Fingers crossed and prayers being said.

Thanks guys n gals. I'm feeling good. No dread. No fear. Maybe I'm a fool, but I'll take it while it lasts!

Amazing!! I know you are having a hard time considering yourself "lucky" but it sounds like this was caught at a very early stage. I have a friend who had a very similar story to yours - sore muscle, etc - got a chest xray and they found cancer. He is doing great now - and that was many years ago. I realize that is not the same as your situation - metasisis vs new cancer - but I am praying for similar outcomes.

Forget statistics. They don't count as the only statistic that matters is what happens to YOU.

Keep us posted on how this is going.

Hugs

Donna

Hope all goes well and best wishes for a speedy recovery!!Semper-Fi Bob

Love your attitude! Best of luck and keep us updated.

Seth

Damn, yet another member of the Damn, I've got cancer again club.
It's not fair that you have to deal with this, but it's clear you will. You have beat cancer before and you will do it again
Keep the Faith
Charm

Thanks everybody. I'm nearing the end of day two of round one. Cisplatin the first evening followed by now most of a 24-hour bag of 5FU. Nice room, good food, can't complain. Had a bit of nausea in the morning, quickly and effectively medicated away. I could say I feel as if I have a slight hangover, maybe. No other side effects to speak of (yet).

So! Not so bad so far.

-Seth

Start of day 4 of 5 of my first chemo drip in hospital. Going mostly ok. This morning tummy feels 'fragile' but stable, no more 'mild hangover' feeling, no more acid reflux. Hoping yesterday was the worst of the Cisplatin side-effects (administered first night). Slept well. 36 more hours of the 5FU drip and then I go home.

I am surprised you are in the hospital to get the 5FU drip. I am doing induction TPF and get fitted with a mobile drip infuser and it just sits inside a small pack I put around my waste. I am sure it is far less expensive this way as well as I have full freedom of movement. Does not necessarily do much to alter the side effects though. LOL

I've heard that from a few angles, Donfoo. It may be down to the gold-plated private medical insurance I enjoy through my wife's work, or it may be out of caution because I reacted badly to *something* at the end of my first cancer treatment three years ago. In any case, evidence suggests that people do better when they are in hospital, as the professionals can deal quickly with anything that comes up. Although being tethered to this damned pump stand is not ideal.

Evening of day 4 of 5, things seem to be settling down, so primary side effects seem to have been from the Cisplatin and peaked yesterday (note that by Donfoo's model, I would have been home for that).

ONWARD THROUGH THE FOG! And I don't mean the chemo fog. Hoping to avoid that.

It may depend on the hospital. When I had induction chemo, in 2009, I was in the hospital 5 days. I know if someone now having IC in Hawaii, 3 cycles, and is doing it in the hospital also. There are probably pros and cons with both. One concern for in hospital, I think, is risk of hospital acquired infections.

Update. Just shy of one week from end of chemo round 1 and I feel better than I expected to. It was far from pleasant, but at its worst on Friday, 15 March amounted to nausea (quickly medicated), low grade 'hangover', and heartburn. I completed round one on Sunday night, and by Thursday evening felt almost normal. My digestion is 'slow' so I need to avoid large meals, but I can taste and enjoy food, and I returned to work late last week.

The debate of in-hospital vs. go home for chemo drip, debate, has some interesting angles. Depending on one's insurance, there could be a clear cost implication, but that (so far) is not a worry in my case. Regarding hospital acquired infection, yes, fair point, but would you rather be in a hospital where they can immediately put you on IV antibiotics if needed, or home, where you'd have to slam yourself back into hospital in crisis mode, to get on the same IV antibiotics? Of course, the lowest immune system point was probably yesterday anyway, when I'm home.

So far so good. Three more to go.

-Seth

Seth, hang in there! It sounds like you are doing much better than expected with this second round. I know its not easy but keep doing what you are doing as it seems to be working.

Best wishes!

Thank you Christine and everybody.

In fact by now, two weeks post chemo, I feel quite good and we even got away for two nights in the Cotswolds Area of Outstanding Natural Beauty, to a lovely B&B in Slad.

I go back in for chemo round 2 on Thursday. Oh well, the alternative is not acceptable, so bring it on.

-Seth

I'm now two weeks post second chemo and again, doing quite well. Eating pretty much what I want, back to work, back to bicycling to work, back to the gym (gently). I'll risk it and say that this treatment (if it's working) is much easier than my original tonsil SCC treatment was.

I should learn the results of last week's CT scan Thursday night. Hoping it will confirm that this is working!

The one more round of chemo starting Friday afternoon for 5 days.

-Seth

Seth, you are doing great!!!! Wow, I am impressed at how well you are handling everything. You must be doing great with your nutrition to be holding up so well. Keep up the great work!!!

Hi Christine, I think for me, in this treatment, for one it's just much less harsh, only being chemo, no radiation so far (that will come later, but will be to my chest, not my head/neck) but it's been being active that has helped the most. Walking, and now bicycling and even lifting, though reduced weight. The chemo principally effects my digestion, and the anti-nausea medications likely don't help that, either, and I've found that being physically active helps my body, well, get things moving again, and probably repair itself, too, since exercise triggers repair (sore muscles). The body works best when it......works. Within reason, of course. As we know, every body, and every chemo, are different.

Amazing orange moon setting this morning here in London.

Hi Seth, glad to hear all is going well and you are feeling pretty good.
Fingers crossed for you on Thursday and hoping for great results.
Take care, Tammy

So glad to hear you are doing well keep us apprised of what is happening we are here for you... best of luck and continue to feel good! ;o)

Hello, Seth.

I am just catching this thread and all sounds very well and hopeful for a cure!

After reading your story, it makes me wonder if my second cancer was indeed metastatic and not a new primary. I, too, do not fit into any statistical/prognostic category, so the same goes for me with careful watching.

I have been selected to participate in a study for rare cancers at Mass General. I'm definitely doing it! Anything to help find new treatments and move toward a cure of this disease!

Best wishes for your continued good results. I hope that your scan shows that the treatment is working and that the follow up radiation will take care of the rest. Let's be done with it once and for all!

Be well,
Kerri

Hi, glad to see you posting again. I can't believe how when I was gone on the 2 vacations I come back and there are so many new members with cancer.

I see you mentioned having problems with breathing during treatment. Did they ever check you for sleep apnea. I know Jeff's came on as a result of the swelling and even though the swelling is gone he still sleeps with the cervical collar around his neck and eventually puts the CPAP machine on. At least now he often waits so we can at least cuddle for awhile till I usually wake him up and tell him he's not breathing at put the machine on. I really resented the machine in the beginning, it totally ruined going to bed together at night. Do you ever feel like you are not breathing exactly right even now?

I see you are in a study for rare cancer. What type do you have that is rare. Jeff's is so rare less than 50 cases. I called out to Sloan Kettering in NY this week just trying to get some info on Jeff's cancer since I know they have treated 2 people with it that didn't make it. Was wondering about the chemo after rads to help reoccurrence.

Today it actually was in the 60's, we had a low of 10 this week and still have lots of snow. 70 for tomorrow so hopefully more melts. I see we had a drift 2 feet deep on the side of the garage still. Such a crazy spring, I want summer and am anxious to get my garden in.

How are you really feeling? Did this second time kick you more? Hope all continues to improve, you are so young to be dealing with it. Take care. Terri

Hello! My CT scan showed strong good effect, significant shrinkage of my tumour in the inside edge of my left lung, and no other tumours visible. My Oncologist is very pleased with this result and confirmed treatment 'Plan A' of a third chemo, followed by radiation to stamp it out.

In fact I'm in my hospital room at the Royal Marsden having had my dose of Cisplatin last night and they've now just started the 5FU which will be administered for four days constant slow drip.

Kerri, in my case they were able to test a sample of my new tumour and confirm it's the same cancer having re-appeared in a new place. They took a needle biopsy through my ribs and lung - that was a new experience! But not terrible.

Terrib, I think you may have confused me for someone else? In fact my cancer is bog standard metastatic recurrence of the Squamous Cell Carcinoma I had in my tonsil, I had a psychotic reaction to something at the end of my treatment, could not swallow, but don't recall trouble breathing. And I'm not part of any trials or study; just going through the standard treatment for this, granted rare, metastatic recurrence. Of course they'll learn something, but my path at this point is not too esoteric.

So far this morning I feel pretty ok. I expect this to change as these drugs do their work with the unfortunate collateral damage, but oh well!

Cheers,

-Seth

That is soo awesome prayers, and fingers crossed for you. Keep on trucking.

Well, that's very good news. You seem to be holding up well too.
It's all about moving forward with treatments. Coping the best we can. Getting that good outcome/response.
Thinking of you and looking forward to your updates.
Tammy

36 hours post Cisplatin, seems maybe the worst of those side effects are past? Cautiously feeling like this third and, hopefully final, round of chemo is going better than the prior two. Might be too early to say that, as they warned me some side effects may be instead cumulative. Only time will tell. But as of this Sunday morning I've managed a light breakfast of toast, tea and cereal and feel 'ok'. No return of heartburn yet, touch of nausea yesterday afternoon quickly medicated.

Then, in three weeks I'll start 4 or 6 weeks of radiation treatments.

On ward through the fog!

Great attitude Seth! Prayers and Best Wishes for you. Eager to hear of continued improvement!

Thanks Steve and everybody. I'm about half way through what should be my last chemo and am at the 'dodgy tummy stage'. Not quite nausea, no heartburn at this point, just low-grade belly ache that doesn't leave me wanting to do much other than try to sleep, which of course I can only do so long. Unpleasant, but no drama.

I should be done by early Wednesday morning (London time). I keep reminding myself that within a few days of getting off the drip each time so far I've felt better than I thought I would.

-Seth

Hi everybody. Just checking in. I'm half-way done my post-chemo radiotherapy treatments and so far am having little if any side-effects! Ironically my head hair is thinning now, which is a late-onset side effect of the chemo, but so far it looks 'ok'. If it thins too much more I may just shave my head, which I've always wanted to try anyway but have never been brave enough. At least, this is what I'm telling myself!

Still working, resumed bicycle commuting last week. Can tell I've been off the bike for a month, but otherwise that goes well, and now that Spring has finally (finally!) appeared in London, it's far preferred to the Tube and bus network.

Met with my Oncologist last week so my parents could meet him, and he said he was 'extremely' happy with how my tumour has responded to the chemo, and clarified that the tumour is not in the airways part of my lung at all, but instead is next to the lung and had pressed the lung over, but the lung will expand like a balloon back into that space as the tumour shrinks. This had not been quite clear to me until he described it to my parents. I may have some collateral irritation in my lung where by necessity the radiation passes in/out, but this should heal up. They are hitting me from three angles to minimise the collateral damage, of course.

Cheers,

-Seth

Seth,
Finally saw this. I've been following you on another site but didn't pick this up. My thoughts and prayers are with you.
All the best,
Rob

Stay strong!!! ;o)

Hi Seth--I may be double emailing you--still getting used to this site. Apologize if I am. It seems your case is so much like my husband's (right down to the silver lining of never having had the nerve-- but always wanting to-- shave his head). I am glad to hear your treatments are progressing. Is the radiation the same type that was used on your initial go-around? Or is it the more directed (cyberknife?) type? We are new to the discovery of the metastasis to the lung's hilar lymph node. And still reeling. Met is still small, so docs advise waiting for it to progress to "measurable" disease before treating it. Getting second opinions shortly. Thank you for sharing your experience on this site. It's great to know you're riding your bike again (in London traffic??!!). Finally, thanks to your forebears for the phrase Keep Calm and Carry On. I have it posted in several prominent places in my life.

Best,
Mary

Hi Mary,
I'm not a doctor but waiting for cancer to grow bigger before treating it, goes against everything I have heard of. Please get another opinion ASAP!!
Good luck.

Hi everybody,

I'm doing generally quite well now, three weeks post final radiation treatment. I *have* developed a pain in my chest, sort of under the tips of my ribs on the treatment side, which spikes when I take a deep breath or squeeze all the air *out* of my lungs, but my Oncologist isn't too concerned, says this could be any sort of post radiation irritation, and my own research online points to similar possible side-effects up to 6 months following radiation. So far it's only a problem while I'm bicycle commuting, when I would normally take deeper breaths.

But, I'm back to work full time and back to eating whatever I fancy. In fact, it's surprising to me that it's only been three weeks since my last radiotherapy treatment. I need to occasionally remind myself what I've been through, and that I'm almost certainly still recovering.

Summer has finally come to London, and it's now time to go for a walk along the Thames with my wife.

Congrats on finishing round 2! It sounds like you are doing fantastic, working, biking to work and taking walks with your wife. Hope the chest pain goes away quickly. Best wishes with your continued recovery!!!

Congratulations on completion. I had similar occasional chest/ lung pains on my surgical side for a while. I had a clear PET scan, x-rays, CT in other follow ups, not related, and were clear too, and pain eventually went away. I thought it was from surgery, anesthesia. Good luck.

You don't mention the recent radiation in your Signature Line?

Wow! You have rocked this thing all along! I cannot say that I have ever seen someone do so well throughout treatment! I am completely amazed and so happy for you!

I think a walk with your love along the Thames is long overdue <3.

Enjoy your summer!

Kerri

Thanks folks. Yes, compared to my primary treatment in 2010 this one has been a breeze, probably due to;

1) different treatment, this recent one being primarily chemo with radiation polish rather than the other way around,
2) the chest location vs. the tonsil/throat location of the first one (less sensitive area)
3) related to both 1&2, no need for 'heavy' morphine-like pain medications which may have sent me 'round the bend last time

David, good catch, I'm updated my sig line (limited characters allowed).

Nothing to be done now until late August when I'll get the results of a PET CT scan to check for any residual 'active' cancer, which would be a very bad result as they will not radiate this area any more (they've thrown the book at this one).

Hugs and blessings to you!

Seth-
SO great to hear you are doing so well after the treatment!

Mary

Very good news! I had the results of my first follow-up PET-CT, following my treatment for my metastatic recurrence in my chest, and my Oncologist told us that the result 'could not be better'. No sign of any active disease at all.

There was evidence of some scarring and residual irritation from radiation, but this is not a surprise. I do still have some of what we're calling 'pleurisy' - chest pain on deep breath, but this moderated two weeks ago and is not on the minor side of moderate, and knowing that it's 'only' pleurisy means I'm okay with that!

I'll have my first follow-up scan in three months. Then, barring trouble, another in 6 months after that.

Yay!

-Seth

congrats seth! one more hurdle cleared well. Praying for continued success.

Seth, congrats on the excellent check up!!!! Its great to see you doing so well.

Thanks for checking back to let us know how you were doing. You have gone thru alot and Im sure it was not easy for you. Best wishes with your continued recovery.

Congratulations on NED!

Fabulous!!

Hi Seth, just catching up with your story and want to say Congratulations on the happy ending to this latest chapter!

Mama

So,awesome! You're superman!

Seth,
Smiles all around! I am so ecstatic to hear such wonderful news! I had a great check up today, too! Let's celebrate our health!
xoxo,
Kerri

Seth,
That is such wonderful news! Thanks so much for the update!
Best,
Mary

Firstly, I wish to apologise for only coming here when *I* have news. I will try to be a better participant going forward.

Unfortunately, after having had very good results at my 3-month follow-up PET-CT scan (nothing to see here, move along) I've had a dramatically different result at my 6-month PET-CT, in that it appears my SCC has come roaring back and spread around my left lung within my pleura, and with one additional spot down probably on my bowel.

Oops.

I feel quite well, aside from some nagging minor 'pleurisy' and a touch of 'asthma', alas, not so much.

Learned all of this last week Thursday night. Yesterday I met with the Drug Development Unit at the Royal Marsden Hospital in Sutton, Surrey, and while it's not finally confirmed, they feel I'm a very strong candidate for a 'promising' new 'targeted' anti-cancer drug by Genentech that's under Stage 1 trials. It's just called GDC - 0980, and it targets a certain 'pathway' in the cancer's mechanism, rather than just shotgun poisoning any and all quick-dividing cells, as traditional chemo does. This means that the side effects should be much less, although of course, it's experimental, so anything could happen.

Presuming this goes ahead, my trial would start in early January.

Onward through the fog!

Hugs to everybody.

-Seth

Hello Seth:
I'm 2 months new to the forum family and brand new to your thread. Since I'm just barely halfway through radiation therapy I'm only just beginning to be able to look down the road to post treatment or heaven forbid recurrence.

I suppose what I am most interested in is how people emotionally handle recurrence. If others are like me this first round of battle with the demon hasn't taken too much of a toll on my psyche, I've been able to stay upbeat and positive throughout it pretty easily.

So, when I came across your thread Round Two it definitely got my attention, kind of an exactly what I was looking for kind of moment. And I wasn't disappointed, you have been able to maintain a tremendous positive attitude throughout the battle and better yet a desire to share it with others.

I wish I had enough knowledge of this demon to give you a valuable tip that would make your life easier, but I don't. What I do have is an appreciation for the strength that you've show throughout this battle. You have made it much easier for me to envision being equally strong should recurrence happen to me.

Good luck with the rest of your journey, I will be keeping an eye open for your thread.

Tony

Stilty - yeah!!!!!!! On the trial drug hoping very much that it gets all of it. Are they sure the bowel is mets and not something else? Hugs you are a powerhouse

Seth, thanks for checking in. So sorry to hear about your recurrence. Thats great news about the trial. Hope it works and can get rid of the cancer forever.

Good luck!!!

Thanks guys & gals. Tony, I PM'd you. Cheryld, I've not heard more about their thoughts on the spot down low that may be on my bowel. I have no reason to expect it's not the same thing. I suppose I should ask about that! Frankly, I hope it is the same thing, because that would mean this targeted new drug would be effective against it!

I'll try to get more info and report back.

-Seth

Here's a link to the drug trial I hope to bet in to:

http://clinicaltrials.gov/show/NCT00854152

This may be very interesting to many of you.

-Seth

Stilty -colon cancer is treatable if caught early - also it may not we've be a cancer. I would be hoping the opposite - that it's not OC mets - I would be hoping it's something that can be removed with a bowel resection. Then you'd be clear. And hopefully this drug works everywhere. hugs

Did they ever do any biopsies for the latest recurrence? Any chance of resection, Vats, Cyberknife, other radiation. Hoping all the best for you. Good luck.

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

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

Seth-
So glad you are able to move forward with the trial, and that it is not giving you a lot of unpleasant side effects. Thank you for keeping us posted. Hope all continues to go well.

Best,
Mary

HuGS!!!!

Time for another update from London! Doing well on GDC-0980 Day 21 of Cycle 1, Dose 16. So far no side effects to speak of. Maybe a bit of heartburn if I eat a large meal, but that may just be my poor choices. Might have had a touch of the runs a while back, but this has settled without treatment. Hardest part is the fasting.

Today I'll be in the hospital all day as this afternoon I also get a PET scan. This scan is for the trial and is not 'diagnostic' for me, but they've just agreed that the radiologist will discuss the results with me anyway.

All other indications are good, blood levels of everything 'normal', physicals look good, basically nothing is going sideways.

My cancer symptoms seem stable to me, so can't say I feel marked improvement yet (this would be early days anyway) but I can also say I don't feel worse. I'm still working and still cycling to work.

I got up at 4 this morning so I could have breakfast and coffee before starting my fast at 5. Because of the PET scan I will end up fasting through probably 3 in the afternoon. Right now it's just after 11 a.m. and I'm hungry and getting a mild headache, but that's all down to the fasting and nothing else.

In another week I get a CT scan which they will use to try to decide if this is working or not.

Cheers,

-Seth

Keep up the good work, Seth!

Here's to hoping the drug does what it is supposed to.

Ditto... hopefully it is kicking up a storm... hugs.

Everything seems to be going well, Seth. I hope for the best possible results, as always. Thank you for the updates!

So! The Radiologist was happy to sit down with me, explain the limitations of the day's image (a fairly raw PET scan intended to be used to evaluate if that tool can be used as any sort of 'early indicator' of drug efficacy), and described and showed me that, within the limitations of the image, nothing much has changed. The good news is, it's not spread or grown. In fact, one small area of fluid accumulation from the last scan (that I hadn't known about) has dissapeared. But, no aparrent shrinkage yet. But again, they wouldn't normally be checking for efficacy yet. That comes next week with a CT scan with the contrast die, which will be much more useful for making measurements and comparisions. So, no change, which fits wiht how I feel; stable.

I'll take it!

Cheers,

-Seth

Seth--
Great news. Stable is good!

Best,
Mary

No news is good news..
And every little step forward (your fluid resolving itself) is a triumph... hugs

Some good news! Based on preliminary observations and a 30-second phone call with the radiologist, she said she sees a 'slight' 5-10% tumour shrinkage in my latest CT scan. I'll take that!

I've not yet heard any more-formal comment from any of the research team, but may ask for this today.

GDC-0980 appears to be working for me, and with very minor, if any, side effects!

Will of course keep you posted.

Happy Valentines Day everybody!

-Seth

Yeah!!!!

Fantastic!!!

Such great news, Seth!

Excellent!