Surviving Stage 4

TMac52

scouty said:

How could I not say both
I can't ignore the facts.

I was stage IV with no chance at surgery and had to start somewhere. I had no idea what an alternative was when I stared so did the only option I knew I had, chemo. I credit it for getting me started and the alternatives for polishing it off and keeping me there. My CEA was 5.1 when I stopped chemo and my CT report said I still had 4 active tumors (primary rectal one, 2 liver and 1 lung). My CEA has remained around 2 since mid 2005.

I personally think you have to do both if you are stage IV and surgery isn't an option at least to some extent. I mostly focused on my blood work and tried to keep my WBCs and RBCs up and when I stopped chemo I maxed them as soon as I could and kept them there for the first year.

I can't really explain why I felt I had to stop chemo other than I got to the point that I was more afraid of it than of my cancer. Today I am so glad I listened to my body and worked like heck to get it back to a semblance of health.

Lisa P.

PS. Chemo was the easiest (effort wise) and cheapest (for my pocketbook) of the 2.

Scouty,
Just curious what
Scouty,
Just curious what were your alternative treatments TMC ?? Nutrition ?? Forgive my ignorance just in the last few weeks since signing on to this site I am learning more and more however: I dont know all of the abreviations and code words people use here.
By the way your story (from what I can tell so far) is an inspiration congratulations.
Tom

PS how bout those Bruins Bobby?

HeartofSoul

John23 said:

With all respect,
With all respect,


The "survival rates" you noted regarding the web site:
http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

Please note again, the words:
"Relative five-year survival estimates based on survival probabilities
observed during 2000-2001, by sex and site, England and Wales"

There's a good explanation of "statistics" and how they may or may not
apply, at the same web site:
http://www.cancerhelp.org.uk/about-cancer/what-is-cancer/statistics/about-statistics

It's a good read, along with the other information regarding research, etc.


(Just my 1.5 cents)

Best of health!

John

I read the article John on
I read the article John on link your provided on stats. i read the paragraph on site stating;

"Statistics cannot usually fit your situation exactly. They are usually much more general than people think they are. A patient may ask her doctor, "What are the survival statistics for someone with a grade 3, stage 2 breast cancer who has had a lumpectomy, 6 weeks of radiotherapy, 6 months of CMF chemotherapy and has been on tamoxifen for 2 years?". Statistics in that sort of detail just don't exist."
-----------------------------------------------------------------------------------------

I think the lack of specific stats for type, grade, stage, treatment, duration, and other treatment details is a major weakness within our medical system and is a shortcoming that i beleive shold be addressed by our medical community for the benefit of the patients.

i found this article early in the year and posted in CSN. Its provides insight to understanding what limits we have and what steps can be done to improve current situation by collecting medical data and sharing across med centers and DR's.


Cure Cancer? Not Without a Course Correction
April 4, 2010 - 10:33am

http://www.scienceprogress.org/2009/05/cancer/

Points in Summary:

1. Why we need to redraw the battle plan—one that focuses on turning the treatment system into a research and learning system that can teach oncologists the best use of the weapons they already have

2. drug and biotechnology industries are lavishing increased attention on cancer (861 drugs and vaccines in clinical trials, according to a recent announcement[2]) most of the newly approved agents that squeeze through the pipeline extend the lives of patients for only a few weeks or months, often at great expense. The outcomes are never gathered. The data is never analyzed. the findings are never disseminated

3. As these patients’ cancers advance, their physicians try regimens they read about in journals or hear about from colleagues. The outcomes are never gathered. The data is never analyzed. And the findings are never disseminated.

4. an estimated 70 percent of all cancer drugs are used off-label. In other words, most prescribed chemotherapy regimens have not been approved by the Food and Drug Administration for that particular use. Much of the off-label use is supported by the slimmest of evidence, often just a single trial in the medical literature of limited size and duration.

5. Pediatric oncologists on the other hand, steadily refine the treatment regimens base don their success in using shared data and results in trials to the point where survival rates today are over 80 percent, up from 20 percent in the 1960s. Adult tumors can take decades to develop and are resistant to treatment. Pediatric cancers, in contrast, usually “arise from embryonic development and develop into cancers that are much more susceptible to chemotherapy and radiation

6. Focus on collecting extensive information about the 1.3 million Americans who are diagnosed and treated for cancer every year. Let nation’s physicians move toward adopting electronic medical records. This will enable oncologists to record their patients’ demographic and genetic information their diagnoses, their treatments, and, eventually, their outcomes. This information could then be analyzed retrospectively to see what works and translated into guidelines for better care if the data is in the database, you can answer that question in a few hours, or maybe even a few minutes .

7. The National Cancer Institute recently took a major step in building an information superhighway to serve a cancer learning network. The ambitious goal behind CaBIG, the Cancer Biomedical Infomatics Grid, is nothing less than turning the billions the nation spends each year on cancer care into that “learning system

Link
Science Progress
Source
By Merrill Goozner
Publish date
May 19th, 2009

bruins1971

TMac52 said:

Scouty,
Just curious what
Scouty,
Just curious what were your alternative treatments TMC ?? Nutrition ?? Forgive my ignorance just in the last few weeks since signing on to this site I am learning more and more however: I dont know all of the abreviations and code words people use here.
By the way your story (from what I can tell so far) is an inspiration congratulations.
Tom

PS how bout those Bruins Bobby?

Bruins are playing very nice
Bruins are playing very nice but I am still trying to get over last years playoff collapse...I guess I will take comfort in what the Red Sox have done in the last week making them the team to beat in the MLB....

bruins1971

Cured against NED
I honestly think the best we as stage 4 cancer patients can hope for is one of two things. First of all the only way to be cured at this time is for my Lord to cure be of this cancer for man does not have a cure that we know about although I totally believe that they do have a cure for a lot of diseases but this is big money and the pharmacy companies are making way too much money to just give up the cure and then they go out of business. The second thing we can hope for is to make it to the NED stage and then stay there for a long as humanly possible. Right now I am the middle of treatment and have never seen the NED stage. My fight has only been going on since March 2010 but I am only two chemo treatments away from a scan to see if everything has worked. I pray that my scan comes back clean but if not then I will keep up the fight to make sure I am here for years to come for my children and my wife. I try not to look at the statistics as we all know they are not good for us but with that said there are people who survive stage four and live for many years and that is what we all hope and pray will happen to us.

bobby

taraHK

Not exactly
Well, I was diagnosed Stage III so excuse me barging in! Diagnosed 8 years ago (December 2002). I've had 4 recurrences since then: three solitary lung mets, and now dealing with bone mets. Have had 4 surgeries and now on chemo for the fifth time. But, I've had stretches of NED (about 2 years is my pattern!). When I'm NED, I try to have as much fun as possible (travel, exercise, socialize) -- and when I'm on chemo, the same! I have received so much inspiration and knowledge from this board from survivors who are stage IV, III, II an I, and I am thankful for it every day.

Tara

Buckwirth

scouty said:

Nice post Buckwirth
I don't refer to myself as cured and never will as I say in my response to Cheryl above. My response was an attempt to offset the negative energy I got from hers.

Lisa P.

Thanks Lisa
I often scare my oncology nurse when she tries to tell me that I am almost done with treatment. I usually respond with "that's not true, I am stage IV." Last time she looked at me with great concern and told me I have to have hope...

I have hope, but this is going to be a long struggle, and if I do not face that up front, I will not have the strength to keep up as time goes on.

Lori-S

scouty said:

No problem Cheryl
I understand where you are coming from and have no idea why I have been lucky while so many of my friends have not. I get frustrated that my docs (at one of the comprehensive cancer centers and a teaching hospital aren't more inquisitive). When my oncologist and I talk about it he usually shakes his head and says I have an "amazing immune system". You would think they might want to try to see what in my immmune system might be helping me so they could learn from it.

Personally I will NEVER refer to myself as cured. No one knows what causes cancer or where it comes from so how the heck would they know it's cured!

As far as Bobby and what his doctor is doing or better said, not doing for him I agree with you. His oncologist is not following the normal protocol or treatment recommendations for stage IV colorectal patients for some unknown reason and Bobby had no clue until he asked. That is one of the wonderful things about this board! FWIW, I'd still fire the guy if it was my doc AFTER I found another one.

I took offense at your post because I thought it was too doom and gloomy for folks new to the fight. People come to this board for education, inspiration, hope, friendship, support, and laughs. If they wanted dismal stats, negative thoughts, and fearful predictions there are plenty of other places to find them. I have lots of thoughts about our cancer but some I would never post on this board, I just don't see anything gained from it.

I have become a big believer in positive energy and avoiding negative energy when I can, which includes not talking to my own mother as often as I used to. I've worked in the technical world for 30 years and can research scientific facts and stats with the best of em but I also know there are things in this world and this life that can't be explained or measured and your post just felt too definitive to me. It would have scared the sh3t out of me 6 years ago when I was first diagnosed, I was alreadys scared enough already and that is why I singled it out.

Lisa P.

PS. How's the pup? I had to have my cancer fighting girl Scout (in my photo) put down in Oct. she was only 8. Skin cancer of all things, it went internal. Boxers are prone to it and ironically she had her first few cancerous skin tumors removed 2 months after I stopped chemo and was starting to get good news. One of my sisters thinks she took my cancer from me but who knows. After saying goodbye to her, I came home to find my 20 year old cat Ginger had curled up behind the sofa and died while I was gone. Tough day but you know 6 years earlier I was looking for homes for them since I never expected to outlive either of them. Heavy stuff!

Lisa
So sorry to hear of Scout and Ginger.

I have a 17 year old jack russell (the dog of my life) that helped me raise my boys and I was told a year and a half ago that she'd only make it another 6 months due to a brain tumor and that I needed to have her on chemo. I said ... she's been such a good dog, I'd never do that to her ... put her on chemo. Let her be as healthy as possible ... wuality over quanity. And here she is still kicking. She's getting much slower and a little fatter. But, we do our 3 mile walk each day (she's good for me!) and she's still a happy dog with light in her eyes. I know that we are looking at probably not another whole year. So, I really can relate to your Scout. It's so sad to lose our bestest friends/kids. I'm sure that Scout and Ginger both are watching over you still. HUGS

Kerry S

Don’t “over think” this crap
Bobby,
Don’t “over think” this crap. It still boils down to the 3 simple words. Attitude - Attitude - Attitude.

My “cancer pathfinder” sister and I were talking about this yesterday. She said that there were 4 women that all were in the same basic shape as she was with breast cancer (30 years back) and always ran into each other at the doc’s office. One woman had the best prognosis of the 4. However she had the worst attitude. That woman croaked after a very few months. She met her mental expatiations of cancer.

It is like you keep looking for the magic cancer bullet. That bullet is deep inside you.
My approach to most problems in life is to simplify the hell out of them. Then I can get my head around the problem and solve it.

Yes, I also use the John Wayne and Dirty Harry approach and just lower my head and charge into the mess. Example – crap storms from reconnection. I did not listen to my buddies on this board as to what to plan for after reconnect.

The scary old woman solved my raw butt problem. She cut up old T shirt material into wash cloth size. We keep them in the bathrooms. I wet them down and I can clean up my butt without sanding my butt down more. I put them in a plastic bag and she just washes them like one would wash diapers. The only problem is it takes forever to get hot water to our baths. So I wet them down with cold water. That puckers up the old butt.

Kerry

bruins1971

Kerry S said:

Don’t “over think” this crap
Bobby,
Don’t “over think” this crap. It still boils down to the 3 simple words. Attitude - Attitude - Attitude.

My “cancer pathfinder” sister and I were talking about this yesterday. She said that there were 4 women that all were in the same basic shape as she was with breast cancer (30 years back) and always ran into each other at the doc’s office. One woman had the best prognosis of the 4. However she had the worst attitude. That woman croaked after a very few months. She met her mental expatiations of cancer.

It is like you keep looking for the magic cancer bullet. That bullet is deep inside you.
My approach to most problems in life is to simplify the hell out of them. Then I can get my head around the problem and solve it.

Yes, I also use the John Wayne and Dirty Harry approach and just lower my head and charge into the mess. Example – crap storms from reconnection. I did not listen to my buddies on this board as to what to plan for after reconnect.

The scary old woman solved my raw butt problem. She cut up old T shirt material into wash cloth size. We keep them in the bathrooms. I wet them down and I can clean up my butt without sanding my butt down more. I put them in a plastic bag and she just washes them like one would wash diapers. The only problem is it takes forever to get hot water to our baths. So I wet them down with cold water. That puckers up the old butt.

Kerry

totally agree
Kerry,
You are so right in saying that attitude is a huge part of beating cancer. When I was diagnosed I was told my onc at that time that I had a great attitude and along with my over all health, age, family support and faith I was already ahead of the game. If you let cancer take over and think it's gonna take you soon then it will. Everyday I thank God for my life, wife and family especially my kids. I am sure you find great comfort when you are alone in the woods just talking to yourself or whom ever you feel like it to get rid of any negative thoughts that try to creep into your mind. Even if something comes back in the scan after my chemo I will still keep the same attitude as I will never stop fighting and I will never stop believing that I will be healed from this disease. I am living with cancer and will for the rest of my life but the key is living with cancer not dying from cancer. Take care my friend I hope you have a wonderful Sunday.

Bobby

Lori-S

Lori-S said:

Bobby
Not from personal experience but I have been told that there are now many doctors who see stage IV colon cancer as a chronic disease and treat it as such as opposed to the nearly always terminal disease that it used to be though of. Even with the worse 5 year survival rates that are quoted, there are always going to be those that will survive and be NED. We all hope that we make that list for sure.

OK wait
I wasn't totally honest about hoping that I will be one on the list of survivors. Some days ... And I'm just being really honest here ... I hope that I go right after my dog but, before my son. As most know I have a very sick 23 almost 24 year old son who just seems to be getting sicker. I just don't think it's right that a child should die before their parents. I can't leave before my dog because she is so old and a bit sickly now and I don't want anyone to have to care for her, I want to be there for her. Sometimes, I ask myself ... shouldn't I feel that way about my son too? But, it just seems so wrong for a child to go before their parent and I don't know that I could handle losing my child after all we've been through.

PatchAdams

From Bruins1971 wife
Bobby's wife sent this out today.

This is Maribel Flaherty:
Bobby is facing some difficult days as a recent scan finds cancer in his bones. We are searching for peace through this and even though we don't know all the answers, the Lord does. He has all of Bobby's days counted and knew all the lives he would touch because of his passionate love for Jesus. His pain has never been in vain. Bobby spread not only the Word but he was God's arm as extensions of love on this earth. We ask for continued prayers.
Psalm 39:4-5 Show me, Oh Lord, my life's end and the number of days let me know how fleeting is my life. You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man's life is but a breath.

http://www.facebook.com/photo.php?fbid=467026896651876&set=p.467026896651876&type=1&theater
I don't know how to insert the picture.

Bobby is an awesome guy. I wish you'd been able to get to know him as well as some of us did.

Patch

SharonVegas

This is such a great
This is such a great discussion. Thanks for starting it Bobby. Very inspirational to hear all of the long term survivor stories. I'm stage IV since March 2011. Probably longer because it took me a while to get diag. I feel great. Attitude is key!

John23

PatchAdams said:

From Bruins1971 wife
Bobby's wife sent this out today.

This is Maribel Flaherty:
Bobby is facing some difficult days as a recent scan finds cancer in his bones. We are searching for peace through this and even though we don't know all the answers, the Lord does. He has all of Bobby's days counted and knew all the lives he would touch because of his passionate love for Jesus. His pain has never been in vain. Bobby spread not only the Word but he was God's arm as extensions of love on this earth. We ask for continued prayers.
Psalm 39:4-5 Show me, Oh Lord, my life's end and the number of days let me know how fleeting is my life. You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man's life is but a breath.

http://www.facebook.com/photo.php?fbid=467026896651876&set=p.467026896651876&type=1&theater
I don't know how to insert the picture.

Bobby is an awesome guy. I wish you'd been able to get to know him as well as some of us did.

Patch

THIS IS A THREAD FROM 2010

Many of the individuals are no longer able to answer posts directed to them.

Jaylo969

John23 said:

THIS IS A THREAD FROM 2010

Many of the individuals are no longer able to answer posts directed to them.

OMG
I really wish there was a way to lock these older threads for posting. They are good to go back to for reference but OMGosh when they pop up here and we see 5 of our very dear friends on the thread who are no longer with us....it is just too much!

Maybe Patchadams can start another thread? My heart goes out to Bobby & family.

herdizziness

PatchAdams said:

From Bruins1971 wife
Bobby's wife sent this out today.

This is Maribel Flaherty:
Bobby is facing some difficult days as a recent scan finds cancer in his bones. We are searching for peace through this and even though we don't know all the answers, the Lord does. He has all of Bobby's days counted and knew all the lives he would touch because of his passionate love for Jesus. His pain has never been in vain. Bobby spread not only the Word but he was God's arm as extensions of love on this earth. We ask for continued prayers.
Psalm 39:4-5 Show me, Oh Lord, my life's end and the number of days let me know how fleeting is my life. You have made my days a mere handbreadth; the span of my years is as nothing before you. Each man's life is but a breath.

http://www.facebook.com/photo.php?fbid=467026896651876&set=p.467026896651876&type=1&theater
I don't know how to insert the picture.

Bobby is an awesome guy. I wish you'd been able to get to know him as well as some of us did.

Patch

Maybe you could have posted
on a completely different thread.
It's in bad taste to have posted this thread with Bobby being as ill as he is now, and this is one of his many I know I will be healed threads.
Next time perhaps consider that for many of us, on this thread we have dear friends, like Cheryl, Kerry, Roger and buckwirth that are no longer with us and the thread is about surviving. As for Bobby, I still wish him well, and am sad to see any human being in the shape he is in. I even said a prayer hoping for a miracle for him and his family. D@mn this cancer, he has loving children and a loving wife, it just seems so wrong on so many levels that we cannot be cured of this cancer.
Winter Marie

jasminsaba

herdizziness said:

Maybe you could have posted
on a completely different thread.
It's in bad taste to have posted this thread with Bobby being as ill as he is now, and this is one of his many I know I will be healed threads.
Next time perhaps consider that for many of us, on this thread we have dear friends, like Cheryl, Kerry, Roger and buckwirth that are no longer with us and the thread is about surviving. As for Bobby, I still wish him well, and am sad to see any human being in the shape he is in. I even said a prayer hoping for a miracle for him and his family. D@mn this cancer, he has loving children and a loving wife, it just seems so wrong on so many levels that we cannot be cured of this cancer.
Winter Marie

I agree ...
I don't wish to sound crude and I hope that's not how you'll perceive my comment; however, this thread is about surviving ... and it's incredibly misleading to read these seemingly success stories of folks who have in actuality already passed.

I haven't been on here long enough to know many of the folks who had posted under this thread, including Bobby, so I am confused as to who of this list is still actually with us. I know Scouty is well and no longer participating here but who else?

I wish Bobby well ... he and his are in my prayers during this very trying time.

LivinginNH

I've been thinking about
I've been thinking about Kerry often this past week. I remember that his wife made him some kind of tube top to hold the bags in tight while he slept. I was thinking about makIng some for Rick now too. So, seeing his kind ol'face made me smile, and reading his post actually brought back a lot good, and very funny memories. I know it's hard to see their posts now, but I try to remember their fun loving personalities and it just warms my heart to have them as part of my fond memories.

To our dear departed friends, we loved you all....

impactzone

6.5 years here after 4 lung
6.5 years here after 4 lung surgeries, colon surgery, liver surgery and 10 months of chemo. Still working and coaching and doing well. I did nothing special that others haven't done and the randomness is so unfair.
Chip

PhillieG

SharonVegas said:

This is such a great
This is such a great discussion. Thanks for starting it Bobby. Very inspirational to hear all of the long term survivor stories. I'm stage IV since March 2011. Probably longer because it took me a while to get diag. I feel great. Attitude is key!

Visit the Link...
Bobby's not doing so well.
Photo of Bobby

PS: While it's tough at times to see photos of people who are no longer with us, many times information that are in the posts is still relevant to many. People either will or won't look at the dates on posts before they comment. I don't see how attacking the messenger does anything helpful. If one feels it should be a new thread, then make a new thread...