So, reticent and negligent, the prodigal HNC patient returns with some less-than-pleasant news. My 6 month PET scan came back with 2 spots, one in the neck that is very small and could be nothing but is probably a recurrence that will require surgery (wonderful) and a second spot in the chest which is "concerning".

I meet with my RO on Wednesday, but my ENT and the pulmonary oncologist he spoke to believe this to be too deep to biopsy. Their recommendation right now is to get a targeted CT scan in about 6 weeks and take another look and then determine treatment options. I see from reading, however, that distant metastasis to the chest is not a particularly great thing.

The ENT described the treatment as "for cure" so I am guardedly optimistic, but I must say my reading has not been encouraging to this point. Hopefully my RO has something more encouraging to say although we (my wife and I) worry he might have a bit of and "I can save everyone" complex.

As before, I'm frightened, a bit depressed and very worried. Maybe it's a bit of a false positive on the PET scan but I think that is foolishly optimistic -- I am preparing for the worst and considering curative vs. palliative discussions -- I hope they choose their words wisely. Meanwhile, all I can do is wait until Wednesday to talk to the other doc and then hope for good news at the turn of the new year.

I had hoped I had this thing beat and assumed I did. I guess I'm lucky they are doing 3 month scans as any hope I might have hinges on the idea that early recurrence/metastasis at least lends hope to curative treatment. As before, I am so lucky for my wife -- she spent another long weekend sheltering me from what I think of as my own personal "Pigs on the Wing" -- my sadness, fears and anger over this stupid, unfair disease. Yeah, feeling a bit sorry for myself today. I can muster Hellion by name, Hellion by nature fighting spirit when they tell me my options -- today I just need to feel bad, feel sad and feel like everything sucks.

Try not to worry... One of the members here had a son with a spot on his lungs... It was scar tissue. Hopefully it's something environmental, or maybe something you aspirated. It doesn't have to be cancer. Hugs.

Yeah, I know how you are feeling. It's cathartic to vent, so vent away.
This disease and all it's incumbent fears are horrible. Just try not to let yourself slide into that grave . You really do still not know exactly what you are dealing with here. But I get the worries and fears. Try not to borrow sorrow from tomorrow.
Why do they want to wait 6 weeks more? If this was "us" I would want a definitive answer and start of treatment now.
Keeping you and your Wife in my thoughts .
Tammy

That does stink! Vent all you want. Hopefully, there are other reasons to cause this uptake, I had my share, but is difficult to say without a biopsy unless it shrinks, disappears in that wait time. I guess the lung suspicion is too deep? An FNAB, under ultrasound guidance, may be possible for the neck lymph node, which results may shed more light in the direction to go.

Good luck, and hope for better answers, reassurance with your meeting.

Hellion, I'm sorry the news is not more encouraging. It is only human to be scared and sad, so give yourself permission to be so. Keeping you and your wife in my thoughts.

Im so sorry you did not have the best results. Try taking it one step at a time and not to get too far ahead of yourself. If after further testing it comes back as a recurrence, seek out a second opinion right away.

Wishing you all the best!

So sorry to hear that, Hellion. Hope Wednesday's visit gives you a clearer picture of the options. Having just been through a six week wait for FNA/ultrasound which turned out okay I know how horrible the wait is. I've had the wait before too on several occasions. This time I had a period of extreme sadness then remembered all the info I'd got about meditation etc from the cancer psychologist. I wrote a diary and Googled "how to wait for cancer results", finding a couple of strategies which helped.

Talking to a psychologist or counsellor might help a lot.

My love to you and your wife.

Go ahead and feel bad, feel sad and a feel like everything sucks day. I can only hope for some decent news on the next appointment.

Thank you all for the good advice. I was hoping for a simple resolution to this latest scan -- now it's time to see what we do next and when. I just like having some place to shout sometimes, hehe.

The Hellion

The fork in the road you stand is where I have been too. My "spots" on the lungs were there in the initial scans and could not be ruled out as distant mets. Since it was proven to be so, I got a M0 and trotted along the curative path.

I went round and round with pulmonologists to try to figure out the "spot" but never was able to diagnose it.

After treatment, the scans showed it remained there; so, the logic went if it was cancer it would have changed (i.e. gone away or reduced) and since it did not change it was not likely cancer and likely an infection or scar.

The next full scan about a year out showed it disappeared so it was some infection.

During that first time interval between it being shown and not knowing for certain was quite unsettling to say the least. For me it was the most difficult thought I had to manage as it was the one I could not assign any rationale.

When he second scan after treatment showed it remained, I had some solid ground to get out of the limbo land.

As we always say, it's not cancer until proven and that certainly is the case with the spot on the lung.

Yup... it could be numerous things. It should of course be given its due diligence, but its not cancer until the biopsy says it is. hugs.

Well we met with the RO and the spot was definitely not there the last time so things look poor. We have a meeting with the chemo oncologist today but I think that may be less important than it was. We'll see what the CT scan says but at this point my RO feels like we're in the palliative care mode. We are going to get our diagnostic CT on the 26th and get second opinions, but at this point it looks like we're kind of screwed. QOL is so important to us -- that said, I'm very likely willing to give the curative path a shot if they're willing to shoot.

Another day of tears, another day of imagining leaving my beautiful, wonderful, amazing wife and it hurts. Fingers crossed that the CT shows something positive or at least curative, but with Wednesday's consult, a door closed -- there are a few windows left open in the room, though, and maybe we can slip out of one of those before this thing notices we've even moved haha.

The Hellion

See I have issues with drs who immediately jump into palliative mode without a firm dx... That whole thing completely effects a person's mindset and overall health.
You don't know its cancer, and either do they.
Secondly if it is, there are trials you can try.
Thirdly - I know someone who had SCC - got though it still smokes, has had a few spots on her lungs and is still going strong - they couldn't confirm or deny it was cancer but she is at this point in good health two years out.
?
See the onco I dr.

And good luck.. Hugs!

Thank you Cheryl. I'm with you, believe me. I'm clinging to my 1% (or whatever) chance and I'm going to look for every out on this, believe me. I haven't and won't quit fighting -- I just can't see leaving my wife and kids yet. It may not look good, but I don't want to accept failure. Who knows what may happen -- I know it ain't good, I reckon it's probably worst case, but I appreciate your optimism because optimism is a wonderful thing!

Another lyric I live my life by (for better or for worse) -- "Spit In your eye, I will defy -- you'll be afraid when I call out your name. I'm not a number, I'm a free man, and my blood is my own, now. Don't care where the past was, I know where I'm going." - Iron Maiden. Who says 80s metal has nothing to say?

I'm doing my very best to believe that they don't know anything and as such I get to ride on and on and on and on and on.

I should note (hence the edit) in fairness that the RO hasn't made the call and is hopeful that we can get more information. I pressed him for scenarios and odds and he was honest and forthcoming. This is just an indication of the direction the conversation went -- I just seem to like to know scenarios and odds. I'm reporting these things out because I like to shout about things I don't like and you guys are the people that understand the things I am shouting about.

I know too many people here have suffered and lost and you guys, then, know why I cry, why I'm so sad and why the very idea hurts way more than the radiation and chemo ever would. Like I said, though, thanks for the encouragement -- the one thing I know is, whatever the odds, none of us know for certain what will happen until they know more for certain. I'm still hoping!

Thank you!

The Hellion

Im not one for focusing on the odds either. Every single patient is an individual with different variables. If I went by the odds, I wouldnt be here right now. Never count yourself out even when it looks like the odds are stacked against you!

Best wishes!!!

I'm no doctor of course but the terms "curative" and palliative" do not define outcomes but treatment options. Prognosis is just statistics and not a predictor of any given outcome.

Palliative treatments manage the cancer and when able to keep it under control one can experience pretty good QOL and longevity.

We have folks here today who are living examples of survivors managing through recurrence and palliative treatments.

Lastly, as mentioned, put on the research cap and see what other options may be available to you. Trials and other less medically vetted options become more acceptable when traditional treatments are no longer options.

Stay positive! I always used to see some statistic and say who says I'm not in that group, nobody knows either way so believe!

Don

If you ask an oncologist, you will probably get the answer that Don gave above. I had such a conversation with our MO and she said the chemo John is receiving is palliative, so was the trial medication he was on. Where I stand, it does not matter what the word is, palliative or curative, if the medication manages the cancer and slows it down, then I will take it.

Whether John is sick or not, with every passing day, we will have one day less together. This gives me the impetus to live every single day well and with no regret.

Hellion, I haven't weighed in because, frankly, it sucks to hear the news. I, too, think of your family and can't imagine what you are experiencing. AI even shed a few tears for you.

There is nothing in life I know that has been worse than seeing doctors that stop looking you in the eye to tell you how sorry they are. I stopped counting in double digits about 4 years ago.

If there's anything I can do, let me know. If you want to get a second opinion around here or Houston, I would be glad to help make that happen.

Thank you guys. I know you lot have had a harder time than I, so I appreciate so much your experience and encouragement.

I'll keep you posted when I know more. For now, we watch, we wait, we plan and we hope. Boxing Day is suddenly something I am both anxious for and terrified of, just a bit.

Thank you all!!

The Hellion

Oncologists likely look at numbers and statistics because they know that some people don't make it and some do and they don't always know why. I know that my husband defied statistics. His MO shared with him recently that she really thought he might not make it given the size of his tumor. I agree with Christine about statistics and I agree with many others who have talked about ways to cope with uncertainty and waiting and trying to live in the moments that we have right in front of us. I know how difficult this is, and was, for me and I hope that you can find a way to do this. But it does suck and I know I vacillated between hope and despair. I'm so glad you have a place to go where people understand what you are going through.

Hellion,

I am so sorry to hear the crap news. This awful disease is unfair and cruel. I am praying it not cancer and just an infection. Remember, its not cancer until it proven. Take it one day at a time my freind.

Hellion,
I wish I could think of something helpful to say. You are a feisty person, and I think you are going to find the determination to enjoy the holidays. You will know more on Boxing Day - but in the meantime, live in the moment, and enjoy the beauty life offers. Will be thinking about you and yours.
Maria

Well thank you also, hockeydad and Maria. I am still hopeful, and of course I am hopeful for what we might find out at our University hospital as well should the worst news materialize.

For now I intend to enjoy my time, try not to worry until we know more and then decide what we can do from the options we're presented when the time comes.

Thank you all!

Happy Holidays

The Hellion

So as an update to anyone following, I have received the readings on my CT with contrast and there is good news and bad. The good news is, it appears the original site is looking good so the reading there may not be a recurrence at the site. The bad news is, the distant metastasis to the lungs is confirmed. They are hoping for a biopsy if they can safely reach it.

I consulted with our local University Hospital and it appears I may be a good candidate for some clinical trials. The one the research doctor is recommending to start (as he believes we have some time before things go critical) is comparing Cetuximab to Cetuximab + BYI-117 (a protein inhibitor). I would first receive Cetuximab and then add the other drug if I am not responding well enough to the Cetuximab. As my tumor is "low volume" he feels this study (in Phase II) would be a good choice.

The second choice would be to do a phase II platinum +5FU + Cetuximab + some kind of immune-therapy but he thinks that might be too strong. As this is my life, my tumor I am uncomfortable with terms like "low volume" and "too strong" - my instinct is to go in heavy rather than limp in. I need him to choose his words VERY carefully at our next meeting.

I could then look at some second and third line options down the road (in a few months, a year? not sure there).

My question is, has anyone any experience with these? I've obviously done a lot of reading and discovered that Cetuximab and the BYI719 product have some potential but that these are relatively small gains - adding perhaps a few months up to a year or maybe two. These are nice, don't get me wrong, but they do come with some side-effects and risks.

If anyone has any thoughts or opinions, I'll be happy to read them.

Thanks,

The Hellion

Hellion, I'm really sorry that you are in the same boat as we are. Maybe you would like to ask your doctor what kind of outcomes he has got for each option so far. Even for John's phase 1 trial, the doctor was able to tell us how many patients with head and neck cancers have seen the tumours shrinking and how many have had tumour reduction. That may help in making a decision.

Gloria,

Thanks for that advice -- it's on our list of questions. I think of you and your husband often as I know you are going through the same thing. I hope to consult with the research doc on Friday as he has a slot open for a trial that will close soon. I think that is the BYL-117 trial, but it gets a little confusing.

Thank you!

The Hellion

Hellion I am sorry. I am not sure how they confirmed the mets without a biopsy but I guess they have a good inkling. Best of luck and fight fight fight!

I keep mixing up the numbers for these studies. It's BYL-719, not 117 or 119. No head for numbers here.

Cheryl,

They have confirmed the growth and, because biopsy is so risky, they are using the percentages to assume mets from the original source. If they can't biopsy (and currently my ENT and the pulmonologist they brought in don't think they can) then we will be proceeding under the assumption. It's not my ideal methodology, but we recognize their model is probably correct.

Either way, it appears to have doubled in size form ~1 cm to 2cm in 6 weeks so it's definitely not going away.

Thanks!

The Hellion

May I ask the people with mets to lungs, were there any hot spots in the lungs on the original PET? Did you feel any systems? I hope these new treatments show promise for you! I can get lost just reading research articles on H&N cancers. Being here makes me want to learn as much as I can about what others are going through.

Hellion, I'm not happy to read your update either.
Is there a possibility that this could be resected?
I'm presuming that you are at a CCC? Have you considered getting another opinion at a CCC?
I wish you well and trust that your docs will give you options.
Tammy

Hellion, I am not happy with your news, either. I have been looking at the radioactive lysteria monocytogene trials and they are soecifically looking at head and neck cancer but only HPV+. There has been some good results with pancreatic cancer.

"A new recombinant L monocytogenes vaccine, Lm-ActA-E7, was designed by transforming an attenuated Listeria strain with an E7 expression cassette. The cassette consists of the HPV-16 E7 sequence fused to the Listeria protein ActA. The resultant strain of bacteria secretes E7 antigen as a fusion protein with ActA."

It might be worth asking. Also, if you recall the blog of Leroy Seevers, a news correspondent, he had radio frequency ablation to remove tumors in his lung, although it wasn't squamous cell. The common thread has been slow growing cancers.

Best wishes for you.

I'm just gutted by this news. Mate I am so sorry I missed this thread until your message today. Cancer brothers we are, started the same treatment on the same day, went through so much together. So many messages and posts, helping each other out.

You're in my prayers brother, and will be every day.

tamvonk, Uptown

I'm working with my University Hospital now in addition to my CCC -- it's reportedly one of the finest research universities in the country, so I have THAT going for me.

Nothing has been decided yet. The good news is it's "low volume" and "growing moderately" so they are taking a little time to piece together advice and recommendations. The research doctor (yes, he's a salesman) wants me to start a bit lighter and stick to biological agents to start --- he says there is time for the bigger guns if these (Cetuximab and then adding an experimental blocking agent) don't show good promise. We know from my previous treatment that I am not a great candidate for Cisplatin.

I hope he's right.

As I said in an earlier post, my life, my tumor, I kind of want the Minuteman Missile approach, but that may just reduce my QoL for very, very little gain anyway. What I need, what all of us need, is a wonder drug! We actually have pills to cure restless leg syndrome but this continues to beat us?

Yeah, cheap shot, I know, but still... I can't help but think this is more important -- I know it is to me (and I know they ARE researching this every day -- I'm just feeling a little bit bitey today).

So yeah, we're gathering a bit more data, hoping they can do a biopsy (find that out tonight) and that either way they can recommend some experimentals that might actually make a meaningful difference. I'm not ready to quit yet, so I'm pretty much insistent they come up with something. Thank you all for your support, advice and words of encouragement.

The Hellion

Oz,

Thanks, mate. We're not beaten yet, my brother down under! Thanks for being there, my friend!

The Hellion

Hellion, John had to have two lung biopsies when he entered the drug trial. It was a condition for being accepted. As he had one lesion in the pleura, it was the one that the doctors used. All the other lesions were too deep.

As the doctor explained it to us, "It is like pricking a balloon with a sharp needle and then withdrawing the needle without the balloon collapsing or losing too much of the air inside it." John was given local anaesthesia and not put under.

I know the mantra is, "It is not cancer until the biopsy says so." However, unlike biopsies in other parts of the body, lung biopsies are far more tricky and risky.

When John was initially diagnosed, we were told that the first place the cancer would spread to, if it was going to spread, would be the lungs. When the metastases were found, his CT scan report said that the lesion "had the typical seed-like appearance." That was when the doctors knew it was cancer.

By the way, when John got taxol and carboplatin recently, he responded much better than when he had cisplatin. So, don't let that bother you too much. Do remember, though, even with trial drugs, you will get side effects, many of which are like chemo side effects.

Hellion,

I want to suggest that you consider looking at the clinical trials going on at NIH. There are immunotherapy trials for metastatic cancer like:

https://clinicaltrials.gov/ct2/show/NCT01967823?term=NIH+immunotherapy&rank=6

There are also HPV immunotherapy trials going on too:

https://clinicaltrials.gov/ct2/show/NCT01585428?term=NIH+immunotherapy&rank=3

Another thought is to have your tumor sequenced and find out what the mutations are and then choose a drug or clinical trial that targets your tumor's particular mutation. We paid for the cost of this sequencing out of pocket as insurance won't cover it. It ran about $5k and the outfit we used was Foundation One.

I have a friend who has metastatic melanoma and was given 3-6mos to live and is still going at 4.5yrs. There is still cancer there but he's stable and enjoying life. And I read about people in the Washington Post who are clean. They did these NIH immunotherapy trials and were lucky.
Good Luck.

Thinking of you every day brother.

Every day.

So...

For those following, there have been a few changes. The first is, a second tumor popped up which was easier to reach than the first and thus they were able to perform a biopsy which confirmed it is SCC cancer. I have been working with my local university and will hopefully be beginning the Cetuximab + BYL719 study this week or next.

This experimental is a protein inhibitor which makes it more difficult for some cancers to grow -- this is considered a good candidate cancer for the study. My Oncologist a the university believes this is a good 1st line and that he would have some 2nd or 3rd line options, some of which involve some immunotherapy experiments, when that time comes before we have to go with the SoC stuff.

None of these are considered curative, but there is hope they can greatly shrink the tumors and inhibit their growth considerably thereby buying decent time with a good QoL.

Wish me luck. I'll post more when I have more.

Thanks,

The Hellion

That is good news: a plan of action.

Thinking of you.

Also glad you have a plan in place, and even back-up, if needed. Good luck with the trial, and although not curative, it may allow more time, offers hope, and who knows what new drugs, treatments, may come out in the near future.

Good luck.

Hellion, good luck with the trial. Also glad to know that there are second and third line possibilities.

Hi Hellion

I've been following this thread with hopes to get some information for my mother. As it stands now Palliative care is our only option.

My mothers cancer is wraping around her Carotid Artery and cancer cells are in the cheek of her face and neck. At this point surgery or radiation is not an option.

My mother had treatment of Cisplatin with F5U and her cancer did not respond to this treatment at all.

We went to MD Anderson two weeks ago to see if there was a Clinical Trial available to help her. We were told about a Trial that consist of a immune drug and a Chemo drug. It was suppose to build the immune system so the body could fight off the cancer. Then when the oncologist compared the CT scans from home after the Cisplatin to the present CT scans taken at MD Anderson it showed no improvement after the Cisplatin so that disqualified my mother for the clinical trial.

The oncologist at MD Anderson recommended Carboplatin/Taxol. We agreed to do this treatment. The MD Anderson Oncologist is going to work together with my mothers oncologist here in Louisiana. We decided to stay in Louisiana to take the treatment because if my mother gets to sick from treatment I need a Doctor/Hospital to bring her to.

Hopefully after this treatment my mother will show some improvement and the Clinical Trial may be an option.

I admire your courage and determination as you battle this horrible cancer. We are not giving up either and hopefully at the end of the road we will beat the odds.

Prayers to you
Heidi

We are all with you brother. Keep the chin up.

YAY... glad they have something on the go. And the one thing I don't understand is the taking their time thing. With the moderate growth etc. They can't predict that - I disagree totally with that tact - cancer is cancer. It changes and as the body gets weaker it gains more of a foot hold. So time is always of the essence (as the appearance of a second tumor would indicate. In that situation I tend to personalize it to the drs. If this was a close family member - your child? mother? sibling? Would you want to take your time?

Hugs... don't know for buying time. Hope for a cure and thing positively.

Glad to hear they have plan for you. You're in my thoughts!

Ditto , keep fighting . Thank you for the up date I have been following your posts and thinking of you.
Di

So today we begin. I will try and post at least every week or so to describe the process in case it should come up for anyone else. I was randomly selected into the group that receives the experimental from the outset which is good so I took my first dose today and will take it every day from now until....?

The side effects of the study are expected to be light and mostly related to the Cetuximab/Erbitux (which I will henceforth refer to as Erbitux). The study will continue until:
1) It is determined it has no effect (this happens in some percentage of people but the study has not yet released those numbers)
2) The side effects reach a point where QoL becomes something we have to discuss
3) Something better comes along or I am miraculously cured

For what it's worth, I am quite hopeful that this is a miracle drug and that weekly infusions are as bad as it gets for at least some length of time to be determined.

And so it goes....

Keeping you in my thoughts, Hellion.

Best of luck and wishing the best of outcomes for you.

Don

Thank you Gloria, Don and everyone else. I know I'm not the only one going through this -- it sucks for all of us!

I'll post at intervals when I know more.

The Hellion

Ive been following your progress. Wishing you all the very best with everything. Please check in often. You have many who are in your corner rooting for you.

Good luck!

Glad to hear the trial has begun.

YAY!!!! best of luck with it. I am hoping for your miracle. hugs.

Hellion, I have been following your posts recently. Offering you all my positive thoughts and prayers! Glad to hear you are getting started on the treatment.

Dear Hellion,

Here's to wishing you peace of mind as you undergo treatment and hope for a cure.

I know that the anxiety was one of the hardest things to deal with and still is.

I will keep you close in my thoughts.

Love and hope in OCF,
Kerri

Thank you all for your well wishes - we are hopeful!

So the update, I did not get Erbitux infusuion on Friday as scheduled -- and I am not taking the experimental as of Friday. They did my labs on Friday and discovered that my CK levels had shot up dangerously, although kidney and liver functions appeared normal. This seems to indicate a sort of ore renal failure scenario possibly brought on by tumor lysis.

The good news is we are hopeful that the tumors are dying quickly. The bad news is that I am in for fluids all weekend and lots more labs. Additionally, there is a very good chance I will not be able to stay in the study as I am potentially a dangerous candidate. Certainly I am disappointed as this drug, as a first line, is considered so high potential.

We know nothing for certain yet other than that we have to evaluate after they get the CK levels back to normal which appears to be happening with the fluid flushes. Happily, I never even got close to renal failure because of the test they do caught everything early.

Speaking for general health, one week of Erbitux has caused the famous rash of which they speak and my face is dry, flakey and itching like crazy, even with the antibiotics and cream. That's OK, though, as I want the tumors dead, dead, dead more than I want to look beautiful right now. There will be time to get my gorgeous face back when they figure out how to beat this thing into at least a tenuous remission if not a cure!

My research doc will talk to me at our appointment Friday about next steps. I am hopeful we can stay on the drug -- sounds like it might be working well. Otherwise, it may be on to clinical trial second line which is some kind of immunotherapy but I don't know much about it yet.

Again, thank you to my followers and well wishers -- know that The Hellion is far from beaten, but I really need to start winning a dice roll or two!

Cheers, all!

The Hellion

Dear Hellion,

I am sorry to hear about the discontinuation of the Erbitux, however, I am so grateful to hear that they caught the kidneys in time!

You have a positive attitude that is admirable in the face of all of this mess!

Keep up the good work and may those tumours be gone, gone, gone!

Love and hope in OCF,
Kerri

Dear Hellion,

I'm sorry to hear about the complications. But thrilled to hear your bright and strong spirit shine through. Hang in there as there seems lots of ways you can move on this. Good luck. Don

Always in my thoughts and prayers.
Stay strong.
Tammy

Great that there's some good news amidst the complications. I feel very hopeful for you.

Hellion,
Best wishes with getting things back in line! Praying for you. I appreciate and hope for your "Tumors Dead, Dead, Dead" more than physical looks right now! Something we can all agree on and want for you as well as one another.
Whatever it takes, but Never, EVER Give Up!

I've heard that the worse the rash the more effective so that's a good sign.. Hopefully everything will level out hugs!

Thank you for the informative update, Hellion. That's the fighting spirit! Regroup, and try again or with something else.

So,

Been a little while since I updated. After a tumor lysis syndrome scare in the first week of the study, my research doc and study coordinator worked hard with the manufacturer to keep me on the drug at a reduced dose. He is confident that the drug is working well and that the lowered dose should keep me out of danger. Interestingly, aside from (apparently) terrifyingly high CK values, I never exhibited either the lab work or the symptoms otherwise associated with tumor lysis syndrome (i.e. cardiac stress, renal failure, etc.). We laughed when they said that this had only been seen in dogs and monkeys � it somehow doesn�t surprise me that I am, yet again, a problem child.

So, last Friday we prepare to begin again � as soon as labs come back with the expected CK values (they were dropping all week as expected) we can take the experimental drug, wait our hour, do our EKG and get the Erbitux going. Well, my blood Hemolyzes. Two hours wasted, but ok, let�s go again. And again. Nearly eight hours later feeling frustrated, confused and still worried that something else will go horribly wrong, they get the results and I�m started again.

We have no idea if it�s doing anything, but the doc is fairly confident that the elevated CK levels indicate the drugs are working well � it is a mystery that I never really exhibited full on tumor lysis syndrome, only that one value, but he�s happy and confident and I am too. I know he spent a long week worrying I might drop dead on him and thus create a messy paper trail for the drug company and the university, but I was never worried � I felt way too normal for me to think there was a real problem. For my part, tumor cells dying �too fast� seems like a good problem as long as my body can handle processing the toxins which, touch wood, it appears it can. I hope we get a scan in about a month to confirm my hopes that this thing is working well and that we have partial response or at least stabilized response.

Another meeting with the doc today, another dose of Erbitux assuming everything has remained within the tolerances and another week to feel these tumors melting away. For those following and wishing me well, I thank you and I will update again soon. I would like a quiet couple of weeks without any drama � sooner or later, something should just go right I should think. I don't even feel like that's asking for all that much but, as too many of us know, fighting this disease is rarely easy.

The Hellion

Keep up the good fight! Glad to hear there the bus is rolling again.

Thanks fornthe update, Hellion! Best wishes for some good tumor destruction.

Thanks for updating. You are one brave soul. Best of luck, Hellion.

Dear Hellion,

I hope that your doctor and you are on the right track in thinking that the increased CK levels are a good thing and that it means the tumor is being taken down quickly. I pray that your body may continue to handle this process, so this tumor can be disposed of it in the toilet, where it belongs!

I understand that you're looking for some smooth sailing, as I like to call it. You deserve it! In the wake of all is going on in your life, I hope that you are feeling reasonably well. I wish, I hope, and I pray that this will eradicate your cancer. Here's to smooth sailing and good health in your future! Keep up the fight and remember that we are here standing beside you and behind you every step of the way.

Love and hope in OCF,
Kerri

Dear Hellion, what a time you are having. Tumour Lysis sounds good. Glad to hear that your body is coping ok and hope that all this treatment is completed soon with a fantastic outcome.
Thinking of you,
Tammy

Hellion,
I am glad you are able to continue the combined protocol - hopefully any future drama will be restricted to dramatic tumor reduction. It sounds like you are in good hands with your team. It is great having good doctors, it is even better when our know your good doctors are really rooting for you - and it sounds like this is the case.

Thinking about you and all the best.
Maria

Another Friday, another Erbitux round. My doctor thinks the reduced dosage of the experimental drug is agreeing with me, insofar as my labs are now where they should be. I have my first scan as part of the experiment on the 6th of March and I am hoping to see a Partial Response or Stability reading.

It appears the side effects to this study are manageable, now I just have to hope it's actually doing something -- and if it is, that it KEEPS doing something. Turns out, our little cancer cells are pretty adaptive -- drugs like these hopefully inhibit the cancer's ability to feed even if they mutate -- at least for awhile is the hope.

So, fingers crossed, but I do want to say out loud (lest I appear unappreciative to the gods of luck and fate) that I appreciated having a nice, quiet, uneventful, non "huh, we've never seen that in a human subject" week.

Thanks to my followers and well wishers. I hope you are all doing well and I wish nothing but the best for us all.

The Hellion

Good for you and I hope the next round is met with great success, Hellion!

Right on, Hellion. Hope that things will continue on the right track for you.

May the gods of luck and fate smile on you:)

BYL719 sounds like a radioactive isotope or something you add into paint. Are you sure they're not just stringing you along and just filling you up with food colouring?

Its just a theory, but you let me know if you start peeing rainbows and the nurses giggle when they see your chart, you let me know ok?

Keep smiling, we're right there with you brother.

Keep pushing through!!! hugs!

And so it goes....Still going.

It's been a couple of quiet weeks insofar as I do my Erbitux infusion every Friday and take my magic pill every day and we're hopeful. According to my doctor, my labs look great since we adjusted the dosage and he thinks everything is going well......

Today is the first test of that hypothesis. I have my CT scans today to determine if the known tumors have changed (or at least stabilized). I hate these things. A small part of me almost doesn't want to know. Unfortunately, the overwhelming majority of me DOES want to know and, of course, the drug manufacturer DEFINITELY wants to know. I should have results early next week.

The Erbitux rash, after seemingly abating, seems to have come back -- it's been terrible on my arms. The dry skin, though, is kind of psychotic. I actually feel like I am made of shark skin -- that hard, sharp scaling all over. By way of side effects, this is not as bad as it gets, but I must say I'm not really loving it, haha.

I'll try and check in when I get my results -- work has been rough the past few weeks so I've fallen a bit behind.

As always, thank you for all of the well wishes and support!

The Hellion

Hellion, a quiet couple of weeks is good. I am so hoping that your scans show these treatments are working. That you have positive results from the scans.
Thinking of you,
Tammy

Hellion, here's to hoping that you get the results that you would like to have. Best of luck!

Pat yourself on the back! Chemo and work together is a big accomplishment. Hang in there. The rash will go away at some point, at least that is what gets reported.

Hi, Hellion
my husband found that Eucerin's Aquaphor to be very helpful with the Erbitux rash. Also - you might switch to a gentle soap or body wash. Eucerin makes those, too. Anything with the term 'ultra calming' is good. Also, find a nice hat as we head into summer as you don't want sunburn. I have to follow a similar protocol due to my auto-immune issues.
Best wishes and thinking of you!
Maria

I hope the experiments are working, hang in there. I was reading your thread today. I saw a new treatment they are beginning using stem cells for lung cancer and I see you have lung mets. Have you seen the study?

I just found an article, looks like it is just in the UK for now.

http://www.theguardian.com/society/2015/mar/06/lung-cancer-stem-cell-therapy-trial-uk

Hang in there. I hope these studies move quickly

Updates:

The Erbitux chemotherapy is pretty tolerable overall. It doesn't bring a lot of fatigue and the rash has become more manageable as my body has acclimated. It costs a king's ransom, so without insurance I expect I would be in serious trouble.

We did the CT scans of my neck and chest as per the experimental protocol and received good news -- the tumors they are measuring were down about 30-35% with my oncologists split on the effectiveness being down to the Erbitux or the Erbitux + the experiment. I don't really care -- I'm THRILLED to see a reduction.

So what does this mean?

Well, it doesn't really mean anything other than the fact that my tumors have responded, that the response is considered quite good for this early, and that, as a result, we will stay the course. As my experiment oncologist said, this could keep going positively, it could reverse in a year, it could reverse tomorrow -- we never know. As such, I'm taking this for what it's worth today -- good news and we'll see in about a month what the next scan shows. One scan at a time and fingers crossed that things keep moving in the right direction.

Doing chemo (even this "chemo-light" every Friday is pretty annoying but I really can't complain -- things are, overall, going as well as I can expect. There is always the hope that I finally make a saving throw, but even if those odds are ridiculously high, I can at least say that the process has done some good and that I have bought some good time (probably) with side effects I can definitely live with.

As always, my wonderful wife has sat by my side nearly every infusion day and been bored stiff, but always looking after me. I can say I couldn't have done this without her and she is such a big reason I am doing this. I am lucky beyond words.

As always, thank you to my well-wishers and to everyone that is following and fighting their own fights, cancer related or not. I will check in again when I have more news and I hope that news continues to be good!

The Hellion

Thanks for the update Thom. How are you going day to day? What symptoms are you managing and how are you going with them?

Wonderful news!

Your grateful heart will help you through this.

May things keep going in your favor.

Love in OCF,
Kerri

Good news. I'm glad one of other of the drugs is working to shrink the tumours:)

Glad to hear the protocol is going well and that you are doing well. My husband responded quickly to the Erbitux as well. Hoping for the BYL719 to work in synergy with the Erbitux for you!
Maria

Good news is always good news, what a wonderfully supportive wife you have!

Glad the Erbitux is doing its job with minimal side effects.

Hellion, so glad that you are getting positive results. Hope that things are now on the upswing.

Living, breathing scientific experiment log update:

Really not a heck of a lot to add -- things are stable and I have another CT scan due on or around 24 April -- I will let you all know when I have some results.

I am both excited and frightened of these scans. My last scan showed things are working well, so I'm excited, but one must always be mindful that things can turn and in a hurry so I'm a bit frightened as well, haha. Either way I have about 2 weeks before I have to really worry about it.

Skin rash has settled down considerably -- my experiment doc is happy that my body is, generally speaking, adapting to the Cetuximab. I have no symptoms from the lung mets, although I am probably some time away from that.

So, really nothing to say but I did promise to check in more and I hate to disappoint my fans -- I'm really only up on this stage today because of all of .... wait, that's from my grammy acceptance speech, should I ever win one.

I'll post again when there is news but for now, I suppose no news is good news!

The Hellion

No news is indeed good news. You are sounding very upbeat which is great. All sounds positive. I am keeping everything crossed for further good news.
Keep the faith,
Tammy