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Surviving Stage 4

bruins1971's picture
bruins1971
Posts: 228
Joined: Nov 2010

I know some of you have been on this board for years. Does anyone know of anyone who has survived stage 4 for more than 5 years after DX? If not what is the longest and who on here has been living with cancer the longest?

Bobby in Dallas

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Hi Bobby, I have been living with Stage IV colon cancer since Feb of 2004. I have been in treatment since diagnosis with a few breaks from chemo here and there. I have not been declared in remission, NED, or DEAD so I see that as a good sign that I can life a good life with cancer and remain working and generally in good health (except for the dang cancer).

There are people on here who were diagnosed longer ago than I was that are no longer in treatment. I'm sure they will come forward and speak up. I hope you surpass my "record".
-phil
As RobInVancouver used to say "You haven't survived cancer until you die from something else"
;-)

bruins1971's picture
bruins1971
Posts: 228
Joined: Nov 2010

Any day above ground is a good day... Lord keep me in my shoes rather than a pine box...

Bobby

AnneCan
Posts: 3693
Joined: Oct 2009

I have met one woman who volunteers at my cancer centre; she was diagnosed with stage 4 colon cancer~15 years ago. My cancer buddy through the Canadian Cancer Society is a survivor of ~ 22 years. I have not met her; I talk to her on the phone.

bruins1971's picture
bruins1971
Posts: 228
Joined: Nov 2010

Those are the people we all strive to be like then ones who look cancer in the face and say you're not taking me anywhere buddy...

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

about stage IV colorectal cancer being incurable. I celebrated my 5th year of being NED (no evidence of disease) last year and was deemed cancer free from my oncologist and all the insurance actuaries. I have been "dismissed" by my oncologist and my docs are deciding on whether I get blood work and colonoscopies every 2 or 3 years. FWIW, I was diagnosed Jan. 2004' with my last chemo treatment later that year.

There are others here that have gone years with no cancer in their bodies, Stacy is at either 8 or 9 years, Foxy was at 16 the last I heard from her, JAMS is at 4 and all were stage IV. I'm sure there are others but so many want to move on in their lives and sometimes people just need a break.

Now I will admit there aren't as many as I'd like but there are some and stage IV colorectal cancer does not have a 100% mortality rate like Cheryl makes it sound.

There are also some here that have been living with cancer and will be on chemo for life like Phil and Cheryl and they too seem to be doing well.

Lisa P.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I think you may have misunderstood my post in the other thread. What had me concerned was how it came across (and maybe it was me misunderstanding what Bobby had said) but that he had been diagnosed as Stage IV, that the original colon cancer had spread to his liver (hence the staging), that he did have the applicable surgeries and was on the protocol of chemo after the surgery, and is still on the chemo until next month, but here his oncologist is saying he's cancer-free and does not need CEA testing or scans. THAT concerned me that an oncologist would be so free with telling a patient that he is cancer-free when he hasn't even finished his treatment yet and he has had no follow up scans/CEA counts to back up this claim.

Each stage is just a different level of where one's cancer is functioning.... and yes, it is quite possible that you will have two people as Stage III or two people as Stage IV, all will be given the same description of what their staging means, yet you could have one person do extremely well, and the other person's cancer be resistant to the treatments. So, in that sense, staging doesn't mean a damn thing.

You are doing extremely well... better than extremely well. But even you have to admit, that out of all the Stage IVs out there, you are in that oh-so-small percentage who defy all odds and statistics and you can live to say, "See?? It DOES happen!" And yes, because it does happen, that gives everyone else who is any stage, reason to hope that they will have the exact same outcome.

Part of the big support folk get from this board is that there are those who defy the "stereotypes", that they do not fall into the "statistics", that the medical community/specialists/oncologists will say "This is the pattern of how this particular cancer goes" and there will be those who say, "Oh ya? Well just watch me, I don't follow no pattern thank you very much!" and they don't. I'm in awe of when that happens... and I love hearing that more and more people, whether it's because there is so much more that can be offered than what was 15 years ago, or whether it's the luck of the draw and a certain percentage are always going to do well, no matter how bad their cancer was. I truly hope one day I can say I'm in that small percentage.... and even better, if we can prove that that small percentage is not so small anymore.

BUT, one also has to look at the reality of this nasty disease... and it is very complex. The doctors/specialists don't have all the answers and a lot of time they are juggling and trying things just as we are ourselves. Sometimes, for some people they work and for others it doesn't do a damn bit of good. Who gets picked for which percentage you fall in? I don't think there's an answer to that. Someone, in the other topic explained about those whose cancer cells have mutated vs. those who stayed the same and were successfully treated by a particular chemo. That was super interesting and made so much sense... and explained to me why two people with the same cancer, same staging, same everything, can react in two totally different ways to the same chemo. One of them may go on for years, whereas the other one who did the exact same treatment protocol isn't as lucky.

Until the medical field changes either the definitions of Staging, or changes their statistics for each stage... as they are now, Stage IV is still considered incurable. Now what is your definition of "incurable"? The most accepted definition would be that there is no cure. It can be treatable, but there is no cure... and the reason for that explanation is that once the cancer has spread to other organs, it becomes systemic. Now you have tiny cancer cells roaming all around your system. Some will die off because they can't support themselves... others will find a place to set up camp, take root and live happily destroying healthy cells around them as they support themselves and grow... until they become big enough that our technology can detect them. And away we go with treating these mets. They can be treated, but treatment does not mean a cure. We have no idea when the next cells will take root... and for those who are in the lucky percentage, maybe they won't take root, or if they do, through whatever reason (immune system? diet? exercise? combination of all of that?) they are naturally killed off before they become big enough for our technology finds them. So that brings up another definition of "incurable". Science/Medicine has not found a way to cure cancer once it has reached Stage 4. Medicine has come a long way as far as treating Stage IV cancer, but you will find researchers/oncologists/specialists/etc. will not come out and say that Stage IV cancer can be cured. YET, there are the Lisa's of the world where, for all intents and purposes, have been cured. IN-CURE-ABLE. Able to be cured from within. It's not necessarily medicine that has cured you, but call it the stars were all aligned, some magical universal force was at work with you, a belief system, whatever... you have been cured and it wasn't because of something modern medicine did for you.

Can you explain why you are cured, and there are a fair amount of long term Stage IV's out there who are not in treatment so are technically cured... yet medicine can't explain it as they don't have a cure for advanced colon cancer. So, in the medical world, there is no cure for advanced (Stage IV) colon cancer (hence it is incurable)... yet there are many, many Stage IV folk, such as yourself who have been cured (hence IN-CURE-ABLE, able to be cured from within). Gee, if you folk KNEW exactly how you were cured from within... and could actually pinpoint what steps/what you did that actually created the cure, you could be one very rich lady. Was diet really the cure? How do we prove that? No matter what you say you think it was... how does one prove it? The only thing we do know is look at how well you are doing... and medical science can't explain why you are doing so well... but it's fantastic that you and the others are!

I still think Bobby's oncologist was wrong in telling him he's cancer-free when he hasn't finished his first round of chemo... and to tell him he doesn't need a CEA reading because he is sure that there is no cancer there. That just doesn't make sense to me... but I'm willing to give the onc a little slack because I wasn't there in the room and didn't hear exactly what he said. We all know that what is said and what we hear can be two totally different things... and even knowing that, I still have to have my onc repeat everything to make sure it sinks in.

Hahaha Lisa... look at that! You brought me out of the woodwork and I'm back in full babble mode ;)

Cheryl

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

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!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Sorry the post came as such doom and gloom, Lisa. Hey, you've known me long enough (ok, in the virtual and email sense) to know that doom and gloom is not my thing. Like you, I AM and always have been a believer in positive energy, both in the giving of and being a receiver. My whole belief system revolves around what thoughts (energy) we put out there and what we receive back. Life (and death) is all about energy, so it may take a lot of work but surrounding oneself with positive energy really does have its rewards, whereas there's nothing to gain by negative energy (although once you allow negative energy around, it multiplies very fast and you can see some people are surrounded by so much negative energy in their lives, they don't even try to eliminate it. So if my post was interpreted as negative energy, doom and gloom, that was not the intent but to point out how the oncologist had so dropped the ball and the reasons why the oncologist should not have said what he did and because of those words, was not following standard protocol.

OMG... I had no idea about Scout and Ginger :( Huggggggggs! I am so very sorry to hear this. I know people may think I'm crazy but our pets are such a physical and emotional support for us, especially those of us on our own... so losing one of them is like losing a part of yourself. There aren't words that I can say that take away that pain/loss, but know that I'm thinking of you big time!

My little Bridget is doing fine. We had a scare about 2 months ago where she just started screaming in pain, hunched over and wouldn't walk. It was obvious it there was something wrong with her front right leg. When this first happened I panicked... I have never heard a dog scream in pain like that. So I grabbed my keys and purse, picked her up, grabbed my neighbour (who also is Bridget's walker) and we took her to the Emergency Animal Clinic. Xrays and blood tests, etc. later, they couldn't find anything that was causing the pain. They gave her a sedative so she was out like a light. The diagnosis was they think she had a sprained paw. Hahaha... $600 later, we took her home still not really knowing what was wrong with her. They put her on anti-inflammatories and gave me some syringes of pain med. Long and short of it... I was minus $600 and Bridget was fine within the week ;) But meanwhile, while they were examining her they noticed her left pupil didn't react to light stimulation. Sooooo... talked to my regular vet (who is also a good friend) and we decided Bridget needed to go to the Doggie Opthamologist, the fear being, something was going on in that eye and best we find out now rather than later. So, the report from the doggy opthamologist is that she is pretty sure Bridget has an inflammation of the iris. It's possible it could be a melanoma, but since her eye pressure is low, she thinks it is probably an inflammation... which means I give her eyedrops in the one eye twice/day.

So yes, we've gone through a few things, but other than that, she is a spunky, mischievious mini-schnauzer who is very very healthy.... considering she did turn 13 years old last month :)

Cheryl

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

The word cure has several definitions, and you are using one while Cheryl is using another.

Here are three definitions of the word:

1. Restoration of health; recovery from disease.
2. A method or course of medical treatment used to restore health.
3. An agent, such as a drug, that restores health; a remedy.

Cheryl is referring to definitions #2 and #3, while you are using definition #1. So, you may be cured, but there is still no known cure.

This is why, for the purposes of this forum, I think #1 is inappropriate. There are good substitutes for the first definition: survivor, NED, recovered...

Speaking of this as an incurable but manageable disease is the most accurate. Even if I survive this, I will never refer to myself as cured, as that is unfair to those who join me in this journey but never reach the finish.

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

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.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

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.

Betsydoglover's picture
Betsydoglover
Posts: 1211
Joined: Jul 2005

I've been living with Stage IV since 5/05. Liver met at diagnosis. Had sigmoid colectomy in 6/05. Did 6 cycles of oxaliplatin/Xeloda/Avastin - liver met gone after 2! Had a tiny lung nodule show up in 11/08 - removed in 4/09 - did some Xeloda (6 cycles) plus Avastin ( I continue on Avastin only). Feeling good, scans NED, no side effects.

Would be better if I could tell you I never had a recurrence, but still really well 5.5 years post diagnosis.

katienavs's picture
katienavs
Posts: 88
Joined: Nov 2006

Hi Bobby,
I was diagnosed with stage 4 in June 2006. Four and a half years later I am NED but I have had to fight two recurrences. I am doing very well though.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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.

luvmum
Posts: 457
Joined: Dec 2010

Hi Bobby,

I've read some research reports which showed that if liver surgery is possible after several chemo sections, the 5 year survival rate will increase a lot!

I wonder any of you survive stage 4 without liver/lung surgery? My mum's oncologist said to me even before the chemo begins that my mum has very very very little chance to have liver surgery!!! =*(

Dora

p.s. There is a case here in Hong Kong. My friend's mum who had cancer remission 7 years ago, with tumor in her brain, liver, lung, she is still here and can help taking care of her grand-children.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Dora,

The old saying is totally true
Med oncs want chemo
Rad oncs want to burn
Surg oncs want to cut
I say, "Bless them all!!!"

I was dx 7-09. Stage IV. Liver mets. Peritoneal mets. I was told by my med onc that surgery would not be an option. I had a great response to Folfox and after 12 treatments I had surgery. The surgery was not a "cure" and I'm still doing chemo, but I'm glad I did the surgery. Your onc wants you to think and feel in a realistic way. I think that's good. Hope comes from inside of us, not our doctors. Don't lose hope about having surgery. When it comes time to decide, you and your medical team will decide together. Be ready. In the meantime . .

Stay strong and focussed,

Roger

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

From my knowledge, the following types of cancer have the best chance at remaining in remission for the longest amount of years (even classified as "cured".)

http://info.cancerresearchuk.org/cancerstats/survival/latestrates/

Top 10

Testicular cancer including stage 3 (highest level for his type) and for any age
Melanoma

Papallary Thyroid cancer even in advanced stages
(not sure why this cancer was not listed from list on webiste below as this cancer has a high cure rate with ten year survival rates for all patients at 80-90%

Breast
Uterus
Hodgkins Lymphoma especially as a child or teen
prostrate
Cervix
Larynx
Bladder and Renal clear cell carcinoma (kidney)

John23
Posts: 1832
Joined: Jan 2007

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

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

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

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

My liver mets died after chemo and dietary changes (they were biopsied). My lung met was never biopsied but the scans said it responded nicely to the chemo at first and then slowly decipitated after I stopped chemo. My last chemo treatment was the end of Oct 2004'. I did have colon surgery in Jan. 2006 but the surgeons saw no reason to touch my liver.

I have been very lucky and know it! Had a great 2 1/2 mile run 2 hours ago and am very thankful.

Dora remember little chance does NOT mean no chance. It can happen and does. There's no reason to think you mum can't join us.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

just curious Scouty, do you think both the traditional treatment (chemo/rad/surgery) and the alternative options (nutrition...TCM...) were both responsible for your long term remission to now or only the alternative option would have been required?

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

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.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

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?

bruins1971's picture
bruins1971
Posts: 228
Joined: Nov 2010

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's picture
bruins1971
Posts: 228
Joined: Nov 2010

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
Posts: 1961
Joined: Aug 2003

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

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

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's picture
bruins1971
Posts: 228
Joined: Nov 2010

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

PatchAdams
Posts: 272
Joined: Nov 2011

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

John23
Posts: 1832
Joined: Jan 2007

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

Jaylo969
Posts: 826
Joined: Jan 2010

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's picture
herdizziness
Posts: 3402
Joined: Apr 2010

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
Posts: 149
Joined: Jul 2011

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.

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

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!

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

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...

LivinginNH's picture
LivinginNH
Posts: 1302
Joined: Apr 2010

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's picture
impactzone
Posts: 435
Joined: Aug 2006

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

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