Thought I’d update you guys on my progress. Some of you have PM’d me, and I thank you for your concern.

You’ll recall that I was diagnosed with extra pulmonary small cell carcinoma with an unknown primary site. I was treated surgically, with radiation and chemo.

My last chemo session was back in June, and it took me about 6 weeks to recover enough to return to some semblance of a normal life.

The prognosis is still pretty crappy...less than 30% chance of making it 5 years, but my first 2 scans have been clear, and the docs think my chances jump to above 50% if I get passed the first year.

They caution me that there really isn’t any real data out there on my condition. My diagnosis makes up about .4% of all cancer diagnosis in the US. So, I’m a test case. Hopefully, I trash the odds and live to screw my kids out of their inheritance.

Thanks for reading, and thank you for your thoughts and prayers.

Cancer is awful. I'm so sorry to hear what you've gone through, but I'm glad that things are clear and the prognosis may improve a bit. I'm sorry; This really can't be easy to go through. Wishing you all the best!

I am sorry to hear about this but I still wish you strength and good luck for skewing the odds in your favour, so you can annoy and bore your heirs for as long as possible!

I am glad you are progressing well. Hopefully the Cancer stays in remission. Keep on fighting and enjoying time with your family and friends. I hope you know , you are in our thoughts through all of this.

fr8mech wrote:

The prognosis is still pretty crappy...less than 30% chance of making it 5 years, but my first 2 scans have been clear, and the docs think my chances jump to above 50% if I get passed the first year. .

Last April I was given two months to live (metastasised bladder cancer) and was signed up for palliative care and eventually the hospice. Obviously that was wrong.

I'm in remission - I hope the same for you.

mariner

Great to hear there is some good news for you, even if it is heavily tempered. My wife is battling her own cancer and just completed her round of chemo and is looking forward to feeling better. Next comes radiation, just in time for the holidays... Yay! Hopefully for her that will be it but I realize there is always going to be that all too real fear or thought in the back of her mind.

While all that matters is the hoped for end result it sure does ruin things a bit while treatment is on going. I hope you are managing well (enough) and it seems you are keeping as good an attitude as you can. Thanks for taking a moment to share your current situation with us. Please know you are in my thoughts.

With that I will wish to be a bothersome thorn in you kids sides for many years to come!

Tugg

Somehow I missed your original diagnosis. Man, this is tough. I am glad you're clear headed about it and I thank you for your report. I will be thinking of you and sending my good thoughts your way. I am also glad you have seen some improvements and I hope it buys you time while they consider other treatment plans.

Stay well. We're all rooting for you!

- M

You've beaten the odds already, and may you continue to do so until a ripe old age. Keep fighting, and know that your a.net family wishes you nothing but the best.

EA CO AS wrote:

You've beaten the odds already, and may you continue to do so until a ripe old age. Keep fighting, and know that your a.net family wishes you nothing but the best.

My sentiments exactly. Keep up the good fight and let us know how you're doing. Hang in there.

Wishing you the best

I toast to your strength and continued good health, fr8mech!

Here's hoping to the best possible outcome for you, stay strong!

My best wishs for a continuing successful recovery.

Cancer is a bitch, but each year medical research finds more and more ways to attack it.

Attitude, I believe is critical. Between my wife and myself we have gone through 7 cancers and are still hanging in there. I've always been happy moving onto the OR table as it means there is hope.

I do hope that you can keep positive and stay involved. Like my wife with her Acute leukemia, after diagnosis she hit the internet and found some relevant sites and forums. Find one as well as links to trials. You'll be in out thoughts.

Thank you all for your thoughts and/or prayers. They certainly do mean a lot. And, to those who are suffering with cancer, or watching those they love, please accept my wishes for a speedy and complete recovery.

Ken777 wrote:

after diagnosis she hit the internet and found some relevant sites and forums. Find one as well as links to trials.

Yeah, unfortunately there is nothing really good out there about my diagnosis. I've stopped reading the stuff, because they reference the same studies several years ago that produced the 30% number, with a median survival of 18 months from diagnosis with "limited disease", where the cancer has not metastasized beyond the lymph nodes and parotid gland.

Ken777 wrote:

Attitude, I believe is critical.

Agreed. A positive attitude is important in getting through the treatment. It is more important after the treatment. During treatment, the focus is survival into the next week, next day, or even the next hour. After treatment, the attitude is what gets you out of bed.

fr8mech wrote:

Yeah, unfortunately there is nothing really good out there about my diagnosis. I've stopped reading the stuff, because they reference the same studies several years ago that produced the 30% number, with a median survival of 18 months from diagnosis with "limited disease", where the cancer has not metastasized beyond the lymph nodes and parotid gland.

A positive attitude is important in getting through the treatment. It is more important after the treatment. During treatment, the focus is survival into the next week, next day, or even the next hour. After treatment, the attitude is what gets you out of bed.

I'm a positive guy when it comes to cancer - that means a lot may have changed on the R&D side since those studies "several years ago". 30% to 50% would be great news if you get it. That 5 years target also brings in another 5 years of research and trials.

BTW, I just bought my 16 year old granddaughter a book called "Make Your Bed". The opinion behind the title was that making your be first thing was letting you start your day with a success. In your situation just getting out of bed might, at times, be considered a success for the day, but each success can help. God Bless

Ken777 wrote:

BTW, I just bought my 16 year old granddaughter a book called "Make Your Bed". The opinion behind the title was that making your be first thing was letting you start your day with a success. In your situation just getting out of bed might, at times, be considered a success for the day, but each success can help. God Bless

I just bought that same book for my 15 year old daughter. I was struck by the YouTube video that went around this summer featuring Admiral McRaven. Watched a couple of times while sitting in my chair with little else to do.

Hey mate,
I'm happy for your news and positive outlook.
Like you, I'm in the situation where waking up each morning is beating the odds.
I just spent another five days in hospital but look forward to every sunrise I can get under my belt.
Giving up isn't an option for me. I live for my kids. But it sure is hard at times, especially being a single dad.
Mate, be the hero you are to others. I'm right there 'in the trenches' battling alongside you.
Cheers,
Bunumuring.

Apologies to everyone for digging this thread up but it's better than starting afresh. How are you fr8mech?

If you don't mind I have a few questions you could help me with. First I'm sure we could all do with an update!!

I'm doing well. My strength and stamina are slowly coming back, but they are coming back. Thank you for asking.

My initial scans were clear, and I'm scheduled for another set in January. To tell you the truth, I think about them all the time, as they get closer, I get worried. But, what are you going to do?

Ask away. I'll answer what I can.

fr8mech wrote:

I'm doing well. My strength and stamina are slowly coming back, but they are coming back. Thank you for asking.

My initial scans were clear, and I'm scheduled for another set in January. To tell you the truth, I think about them all the time, as they get closer, I get worried. But, what are you going to do?

Ask away. I'll answer what I can.

Keep it up man!

Here is a documentary called Cancer: The Forbidden Cures you might want to check out...

https://www.youtube.com/watch?v=km2cqQNFtEs

Wishing you all the best. Don't give up and use your remaining time to do lots of special things with your family (if you survive then that's still time well spent).

afcjets wrote:

Here is a documentary called Cancer: The Forbidden Cures you might want to check out...

https://www.youtube.com/watch?v=km2cqQNFtEs

That's quite a compilation of false comparisons, invalid assumptions, statistical manipulation and emotional presentation of irrelevant or out of context information; at least the first fifteen minutes was such, that's about all I could stand to watch. Watching that documentary reminds me of the dark side of our political spectrum: the people who have recently banned the CDC from the use terms like 'evidence-based' and 'science-based' on official documents: the populist type of appeal.

If one wishes to learn about holistic medicine, there are much better venues available.

fr8mech wrote:

I'm doing well. My strength and stamina are slowly coming back, but they are coming back. Thank you for asking.

My initial scans were clear, and I'm scheduled for another set in January. To tell you the truth, I think about them all the time, as they get closer, I get worried. But, what are you going to do?

Ask away. I'll answer what I can.

Have great holidays! Good to hear you are moving in the right direction.

salttee wrote:

afcjets wrote:

Here is a documentary called Cancer: The Forbidden Cures you might want to check out...

https://www.youtube.com/watch?v=km2cqQNFtEs

That's quite a compilation of false comparisons, invalid assumptions, statistical manipulation and emotional presentation of irrelevant or out of context information; at least the first fifteen minutes was such, that's about all I could stand to watch.

Perhaps you should have watched more then before commenting, because many people were cured.

salttee wrote:

Watching that documentary reminds me of the dark side of our political spectrum: the people who have recently banned the CDC from the use terms like 'evidence-based' and 'science-based' on official documents: the populist type of appeal.

It was not my intention to turn this into a political discussion.

fr8mech wrote:

I'm doing well. My strength and stamina are slowly coming back, but they are coming back. Thank you for asking.

My initial scans were clear, and I'm scheduled for another set in January. To tell you the truth, I think about them all the time, as they get closer, I get worried. But, what are you going to do?

Ask away. I'll answer what I can.

OK here goes and if it's too personal or an area you don't want to go into then please disregard. I won't be in the least offended.

How did you cope at the beginning and did you have any strategies or ways of trying to make sense of it all without falling apart?

By the way I'm over the moon for you and the place you are in at the moment. Keep on going and climbing higher.

Good to hear you doing better. I wish you the best of recoveries.

Channex757 wrote:

OK here goes and if it's too personal or an area you don't want to go into then please disregard. I won't be in the least offended.

How did you cope at the beginning and did you have any strategies or ways of trying to make sense of it all without falling apart?

By the way I'm over the moon for you and the place you are in at the moment. Keep on going and climbing higher.

When the surgeon told me the tumor they had biopsied was malignant, my first words were “ well, let’s cut it out.” His next words were probably the scariest I heard during this whole ordeal: “first, we have to do CT scans of you thoracic, abdominal and pelvic cavities to figure out how extensive the cancer is.” Longest 3 days of my life.

After an initial spat of “what the hell, why me?”, I approached it the way I approach most things, head-on. Had the offending tissues removed and did research on the next phase of treatment. It was a month between surgery and the beginning of chemo/radiation, so I had plenty of time to prepare myself through research.

I warn you, there is a lot of information out there about cancer, treatments, outcomes, coping, etc. I quickly found that you have to vet, not only by site, but by date. The earlier studies I found on my particular brand of malignancy found that it was, basically, uniformly fatal. Median time to death from diagnosis was around 8 months. Well, there has been a lot of progress in the 30 years since some of those studies took place. While, my prognosis still sucks, it’s much better than the apparent zero I was initially reading about.

In short, to answer your question, I armed myself with knowledge and an early attitude of “if I’m going down, I’m going down fighting”. I had/have a great support group in family and close friends, that provided not only physical help (lawn, cooking, shuttling kids around, getting me to and from treatments, etc.), but also the emotional and mental butressing that is so helpful is getting through the treatment and the aftermath.

I hope I answere your question. As you can probably tell, one of my coping methods is to talk about it. If you have any other questions, please feel free to ask.

Cheers, fr8mech. Keep kicking ass.

Thanks for your reply.

So you would support the idea that hitting Google and reading anything and everything that isn't woo-woo or outrageous in its claims is the best use of your time? Obviously there are those websites which flog ridiculous cures and notions and need leaving alone. I'm talking about the published research, forums, detailed explanation sites and the genuine medical sites with relevant data.

From my perspective there seems to be two ways to go. One is to do as you suggest, the other is to try and forget it as much as possible until histology results come back from a biopsy. That is probably the tougher and less productive way to go. Can you actually switch off at any degree?

The only other option is to fall apart and that's no solution, is it?

Channex757 wrote:

Thanks for your reply.

So you would support the idea that hitting Google and reading anything and everything that isn't woo-woo or outrageous in its claims is the best use of your time? Obviously there are those websites which flog ridiculous cures and notions and need leaving alone. I'm talking about the published research, forums, detailed explanation sites and the genuine medical sites with relevant data.

From my perspective there seems to be two ways to go. One is to do as you suggest, the other is to try and forget it as much as possible until histology results come back from a biopsy. That is probably the tougher and less productive way to go. Can you actually switch off at any degree?

The only other option is to fall apart and that's no solution, is it?

Until you get the results of the biopsy back, you really don’t know anything about the cancer, or even if it is cancer. In that case, stay off the internet. On the internet, ever bump has the potential to kill you. So, it is not unproductive to sit and wait. It may even save you some anxiety.

If you know you have cancer and the type, and you can handle the statistical truth, look at the internet, but vet it carefully. I can’t point to a particular site, because some of the stuff came from schools, some from hospitals and some from government sources. I considered paying for some studies, but decided against it.

Be careful though, I assume you are neither an MD nor a statistician. Some of that stuff was tough to read, the content, the methodology and the conclusion. Bounce what you think you read off your doctor and make sure you understand.

As for falling apart, that’s not part of my DNA, so I don’t think it was ever a real concern. But, life changing events do strain us.

fr8mech wrote:

Be careful though, I assume you are neither an MD nor a statistician.

Nope, unfortunately I find myself on the other side of the table.

I am grateful for what you have shared, as I'm trying to take the most information route. I'e got a provisional diagnosis and as it's a fast growing thing that is on the skin the biopsy was actually a pretty large slice. They want certainty before the surgery and it's all being fast-tracked. The biopsy will also confirm whether any chemo or radiation is needed, or just surgery. One way or another it's coming off....

I am so sorry to learn about that. You're in my thoughts and prayers. Good Luck.

Hang in there, buddy. Hope you find the strength to defeat the disease.Hang in there, buddy. Hope you find the strength to defeat the disease.

Good wishes to all of you fighting cancer. Thank you for the courage you display in this battle.

Kick cancer's ass, fr8mech. It sounds like you and your team of doctors are making great progress.

fr8mech wrote:

I am so sorry to learn about that. You're in my thoughts and prayers. Good Luck.

It's not nearly as involved and hard to treat as your condition, as it's basically a form of skin cancer that I've been diagnosed with. Essentially very treatable and dealt with by surgery, although the dermatologists want to be sure it's not a more aggressive form.

I'll be honest and admit it was the use of words like cancer, carcinoma and tumour that knocked me off my axis somewhat. This despite me having an expectation that this is what it was. That diagnosis and the use of the word cancer comes as a shock to the system and I'm grateful that someone who has already walked that path has shared their thoughts.

Thanks again fr8mech.

Channex757 wrote:

This despite me having an expectation that this is what it was. That diagnosis and the use of the word cancer comes as a shock to the system and I'm grateful that someone who has already walked that path has shared their thoughts.

You know what was really hard, that surprised me? The end of treatment. From the middle of March through the end of July, I saw a medical professional almost everyday, barring weekends. Between infusion sessions, radiation sessions, blood tests & follow-ups, including 9 days in the hospital, I was in a medical facility of some sort almost everyday.

Then, it all just stopped. I went back for a scan, then a follow-up. Every 6 weeks, I go to get my infusion port flushed (I've kept it in for easy access for my scans, the doctor wanted it in for a little longer...just in case) and every 3 months for scans. That's it. It seemed to be a big whole in my life that has just started to get smaller.

Good luck.

I actually found that to be the same when I had my heart surgery. There was the diagnosis, then six weeks of a growing crescendo of tests and appointments leading up to the day I climbed on the gurney.

Took a while longer (complications) to get back out of hospital but after that I was left in an eight week window with nothing happening. It was over; all the crazy of intensive care and daily physiotherapy plus postoperative care just stopped. It was really hard to cope with at times and I even had a strange desire to get back there and get back into my hospital bed. This after pushhing hard to get the hell out of it!

Update: The biopsy results were as good as I could have hoped for. Still needs surgery to remove the tumour but it's benign.

Congrats on the results and all the best for a successful surgery.

Channex757 wrote:

Update: The biopsy results were as good as I could have hoped for. Still needs surgery to remove the tumour but it's benign.

Outstanding.

Channex757 wrote:

Update: The biopsy results were as good as I could have hoped for. Still needs surgery to remove the tumour but it's benign.

My best wish's for a successful outcome for you.

Time to dust this thread off and ask our friend fr8mech how things are...? Not heard from you for a while so hope all is going OK.

fr8mech wrote:

My initial scans were clear, and I'm scheduled for another set in January. To tell you the truth, I think about them all the time, as they get closer, I get worried. But, what are you going to do?

I know how you feel about the wait for the scans - or actually the results. My Urologist sends me for a CAT Scan every January. He wants too check on the kidneys, especially the one with the tumor, but also is checking the lungs (a prime spot for nasties) as wall as other areas that might get mets. The relief to get that all clear is a grand thing.

While last year's results were fine on the mets side the various docs decided that there was an old lump in the right lung that was starting and we are all pulling for you.to grow after years of inactivity. When I got the results I was also given the name of the surgeon and my appointment time. All comments were that the tumor was probably a "regular cancernoid" and probably not a problem. But it needed to come out.

This year's scan was fine and I have months (until sometime in December) before I start worrying about the 2019 scan. Until I get near January I refuse to think or worry about how it might turn out. I understand your feelings when scans are near as well as the great feeling of good news. You have a lot of friends on this board

Channex757 wrote:

Time to dust this thread off and ask our friend fr8mech how things are...? Not heard from you for a while so hope all is going OK.

Well, the good news is I’m “stable”. The bad news is what is stable. My January scan revealed a mass adjacent to the surgical bed in the parapharangyl space. This mass had doubled in size, to 6mm, from when it was first noticed in a scan I had before surgery/chemo/radiation.

The mass has been stable in size in a follow up scan done last month.

The docs are reluctant to do a biopsy due to location (adjacent to the surgical bed and within the radiation treatment field) and, my history of having several enlarged lymph nodes that were determined to be benign after they were removed compared to the 4 that were malignant.

In short, we wait and do more scans and closely monitor the area through physical exam (the ENT shoving his fingers down my throat), and visualization (the ENT shoving a scope up my nose to go down my throat).

Thank you for your thoughts and prayers.

Mate,
And all others in the a.net community in a similar situation,
My thoughts and prayers are with you.
I'm about to do (reluctantly) my first public speaking gig to an audience of around one hundred explaining my ongoing medical battles to stay alive. 'Educating others' is the way 'they' got me to agree to do it.
I'm coming up to the ten-year anniversary of the day I was told I had six weeks to live. Instead of celebrating it like my family want me to, I've decided to spend in volunteering in a hospital.
Keep the spirit up,
Bunumuring

bunumuring wrote:

I'm about to do (reluctantly) my first public speaking gig to an audience of around one hundred explaining my ongoing medical battles to stay alive. 'Educating others' is the way 'they' got me to agree to do it.

I'm coming up to the ten-year anniversary of the day I was told I had six weeks to live. Instead of celebrating it like my family want me to, I've decided to spend in volunteering in a hospital.

Keep the spirit up,
Bunumuring

Your presentation to a group of people can do more good than you think. Anything that gets people to focus on their health, especially in the area of cancer, is a benefit they are providing. Your story is also special in that you have turned 6 weeks into 10 years. That let's people understand that there can be success when facing scary challenges.

Congrats on volunteering at a hospital for the day - you can get a lot out of that. You can also have a celebration dinner with the family after your shift.
.

#48
3 hours ago

Mate,
And all others in the a.net community in a similar situation,
My thoughts and prayers are with you.

I agree. I also wish you all well.