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Was on a high until yesterday.

pscott1
Posts: 207
Joined: Jan 2011

Went in for my 6th treatment. Talked to Onc after labs and he delivered news to me that I guess I just never heard him say. Maybe he said it from the beginning and I just wasn't listening. My tumor marker is down to 1.6 and all 30 of the lesions in my liver are shrinking considerably. However, he told me that I would never be off chemo...at least not more than for a 3 - 6 month break at a time. He also told me that even if I keep my numbers down and my tumors are in control, the average time for me to survive this is 2-3 years. How did I ever miss that?! I can't tell you how down I am. I'm an emotional mess. I have a little 10 and 13 year old. I can't leave them. Has or is anybody facing this same thing? Can I not survive more than 2-3 years?! Liver resection is not an option. How do I go after this now? I want to keep up the fight but this just totally knocked the wind out of me. I just want to live and definitely a lot longer than 2-3 years! Any words of advice, encouragement, wisdom......

Thanks friends,

Pam

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

us who have been operated after shrinkage of many liver lesions Pam!.Others are still here with their less ions controlled leaving a comfortable
life, don't pay attention to stats ! Talk for example to Winter Marie!.
Hope it helped my dear! Hugs!

pscott1
Posts: 207
Joined: Jan 2011

You have no idea the sense of relief I had after just reading your first line! This board is the best therapy I could ask for. Thanks for responding so quickly too...I have been so distraught since yesterday!

Hugs back!

Pam

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I can certainly understand your shock at such pronouncements, and no I don't think you would have missed any of that if you had heard it before.

My suspicion is that even with the good news of very low marker and shrinkage that your onc is thinking that at some point your current chemo may stop working. I think he over stepped the bounds though giving you a time limits.

I would suggest that you get another opinion if at all possible.

As you have doubtless seen from others posting here, it is more than possible to beat those odds. Who knows, at some point a liver resection might even be possible, even a cure.

Don't give up hope. Make plans in your mind to be around at least to see the little ones graduate and marry and give you grandkids.

Make sure you tell your doc that you don't plan on leaving any time in the next 20 years!

Hugs,

Marie who loves kitties

pscott1
Posts: 207
Joined: Jan 2011

I have been in mental turmoil since yesterday. Every time I look at my girls I start crying. I have to believe that with the low numbers and shrinkage of lesions that there is some hope that other things can be done. I have gone on and read of others on the board that have mets even to other organs besides the liver and are still here fighting. I will take your advice definitely and not give up hope. I really could use another 20 years; even if I have to continue to listen to them bicker with each other every day! :)

Hugs,

Pam

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

The chemo for life thing is a bit tough, but it is not always as bad as it sounds, see Craig, Phil and others who have been here for years, and manage quite well in their daily lives.

The numbers your Oncologist referred to are a median (the patient exactly in the middle).

Half will survive longer, half will pass sooner. A better explanation of this can be had here: The Median is NOT the Message

The question is, what half are you on? The median age at diagnoses for mCRC is 74. Are you below that threshold (rhetorical, I read your profile and know you are)? If so, your age alone says that you will probably outlive the median.

Your overall health plays into this, as does how you are reacting to your treatments.

The treatments get a bit easier too. Once you have the tumors under control the type of treatment can change. I started on Folfox, had radiation, and am now taking Irinotecan/Erbitux.

Note also, that while your liver is not resectable now, it may be after chemo is through. You would not be the first who was told surgery was not an option, only to find yourself having surgery.

Something else to take to heart, the five year survival rate for Stage IV CRC has gone up over 100% in the last decade! So even your latest dire news may just be old dire news.

One of my favorite caregivers on this board, GeoTina (she is Tina, the patient is George) recently reminded her husband that this is a marathon, not a sprint. So, ignore the stats, and plan your life as you will live it.

pscott1
Posts: 207
Joined: Jan 2011

I'm going to hang on to the hope that I'm on the outliving the median side! You have taken some of the extreme stress off my mind from this post. That says alot for how much support this board is capable of. I am going to keep hoping and fighting and even when it seems like the end; I'll fight even harder.

Hugs,

Pam

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

I have no words of wisdom to offer to you at this point. What tomorrow holds for each patient, is unknown. Your treatments are working, so keep up the good work, as hard as it is. Stay as healthy as possible. Do something each day that makes you smile and do something that makes someone else smile. Treat yourself to a lazy day now and again. Heck, that bathroom will be just as messy tomorrow as it is today so just close the door.

Don't stress over the next treatment, the next scan, the next appointment for these are things you have no control over. Simply do the very best you can.

As for the future, worry about it when it gets here and for now, live the moment making memories. The stats are getting better and better for Stage IV and treatment options are evolving constantly.

Take care - Tina

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I am in the same arena as you fighting the lions........Looking at most likely maintenance chemo...She did talk about 6 months of some type of regimen but not to talk about it until we see what we are up against.....Like you I have a 6 and a 9 year old, as well as a 17 and a 25 year old...So yeah, I know where you are at exactly...I questioned about longevity myself and she will not talk about it...she does say that however in my benefit that my cancer is slow growing, along with that though is usually harder to treat. But, all in all if we spend all of our time waiting for the storm to hit, and it never does......then we sure have wasted a lot of time.....and if we don't wait for the storm to hit and it does...then every minute we have needs to be spent wisely...Cancer has robbed me of the ability to guarantee my family any longevity with me. But, if we give up then why are we going through the hell we are now...It takes a lot to get up and start a new day, each day with the waking thought that its not me its someone else with this horrible disease. When it really gets me down is when I think that it could be my child instead of me...we just have to find that place where all is tucked away so that the lingering thoughts don't interfere with the things that life is truly about...memories, loving the ones closest to you, and treating people like they really do mean something to us, like we want to be treated...
Pam, I won't sit here and tell you its easily done...I still cry when I start to think about some things, and mostly about my children, but then I realize that even though they are my children it could happen to it has also happened to thousands more and for the most part they do fine after a while...its damn hard to look at them and wonder why me ? I have a mom thats living and she has lost one child from polio at the age of 6. that was 1954, the same year the polio vaccine was invented...Well, I am the baby she was taking care of when the other passed away, I am considered by the other family members as her pet, simply because I was there keeping her busy while she tried to grieve. Now, I am the one she sees in the same boat as her daughter, my sister was. So, for me to pass away before my mom does is not an option, its just not going to happen, I won't allow it to.
I ask a lot of questions on this board about new things that pop up that I am not very learned about, but knowledge is power, and power is the key to longevity in this journey. The more knowledge you contain, the better you can dictate how your treatment regimen goes and what options are available to us out there. Use this board to find that strength that gets you through the next hour, day, or week...We are here for each other, and when I find a predicament that seems to be more than I can handle, I come in here and see how many different options that I really have and then I start to get that "Im fixin' to kick its azz again" feeling, and thats where we all want to be, in that frame of mindset. Its easy to get down when we re occur or chit goes south on us...Im kinda in that funk myself right now, but Im not going to wallow to long...When I feel the need to vent, then I vent...and then I move on...but we can't give into this...because just like polio, someday there will be a cure, and we just have to fight it from treatment to treatment until that day comes....Pam, someday millions are going to be cured of this disease and it could be ten years from now, or 10 minutes from now...but it could very well be anytime a major breakthrough....and thats something real to hold onto...also when I feel down I ask myself if not me then who else would have taken my place getting this dreadful disease...I know what I can handle, and what I can't...as long as its me and not my loved ones then in a sort of way I am still protecting my family by taking the burden of having this away from them.
Take your time to cry, we certainly deserve to do that, and at any given time. I promise that if I decide to vent I am going to...It does rinse out the crap for a while...but try and get mad after you vent and take it out on the cancer, not the family...take it out on the cancer by skipping something it loves as a snack....sugar. Take that extra piece of pie and toss it, or take that candy bar and toss it. I take it as if I can't claim it on my income tax as a deduction, then its not gonna live in my house or my body......get the "attitude"...don't think about something...do it...don't put it off til tomorrow, do it today and then its another accomplishment...
Its easy to give up, I have been on the verge many times in the last 3 years...but just because a cell decided to get squirrelly on me and my WBC didn't squash it as it normally does doesn't mean that it gets a free ride in my body...if it wants to take me out then it better get its chit together cause I have puked,cussed, puked some more and still go back for another round of chemo...I am about to take a scope down the old nostril and have to swallow that...now, won't that be a damn hoot...but you can bet that I will do it, and the reason is because I got 5 here that depend on me, and Im not gonna let them down.........and neither are you.....so since we are in the same boat hold my hand and lets get through this...Look at it this way....lots of great stuff can happen in two or three years..........thats what Im counting on...........love to you......Clift

pscott1
Posts: 207
Joined: Jan 2011

And I truly mean that. When I have these horrible moments I come on the board looking for some of your words of wisdom. I know what you mean about me having it and not my kids; that is some comfort for me. Alot of times when I say "why me" I find myself turning right around and saying "why not me". I do hold on to the hope that if I can just keep stable and healthy enough, no matter 3 or 30 lesions, that one day there will be a cure. Clift it is so hard to make it some days; when I look at people I work with and know they are healthy and have the luxury of planning for retirement or even a vacation next winter, and I'm not sure how much time I even have, it's so sad. I look at my girls and I just hang on their laughter, their smiles and even the sound of their young voices. I'm trying to just live in the moment and appreciate the time I do have with them. But you know how it is....that sadness comes rushing in and the fear that one day I won't be able to hear their voices or laughter or be able to see their smiles anymore. The Onc's words hit me like a ton of bricks and I had the feeling again of when I first heard those words "you have cancer"...but I am a fighter and always have been. I'll be down and hurt for a little but then my "Popeye" mentality will kick in; you know.....'I've taken all I can take and I can't take anymore'. I won't let cancer rob me of everything. I'm going to work on getting mad and standing up to this thing. And just like you, no matter how sick this crap makes me that I have to continue to have pumped into my body, I'll deal with it and keep going. Keep your hand out for me Clift because I have a feeling you're going to have to do alot of hand holding down the road. Much love back to you! You are always in my thoughts and prayers. We're going to make it thru this together. Hug your babies and your older babies too.....they are what keeps me in this fight! I will be thinking of you with the upcoming test you have to take. Ask them to give you something to relax you. Let me know how it goes. Take care of yourself! Hugs, Pam

dorookie
Posts: 1736
Joined: Jul 2007

There are many success stories out there too, Buzz is right, a cure can come at anytime. I am stage 4 and have been NED for some time now going on 3 years, Thanks to GOD and some dang great doctors. I was too told I only had a short time to live but here I sit, still causing hell. I do not know if it will return, but if it does I will fight again, I have 2 daughters and a grandson that I want to be around to see for a long time. Like Buzz often says, no one here on this earth can give you or anyone a time frame, thats up to the man upstairs. So please use the board anytime to vent, cry, scream, and know your not alone, someone here has or is going through what your going through. We are all in this together.

HUGS
Beth

pscott1
Posts: 207
Joined: Jan 2011

I truly feel like we all are in this together. This is my solace when I feel I just can't talk to anyone around me. Thanks for the encouragement and I pray you continue to be NED for many years to come.

Hugs,

Pam

luvmum
Posts: 457
Joined: Dec 2010

Dear Pam,

I always read the successful stories to cheer myself up. When the doctors found out my mum's recurrence 3.5 months after her liver resection 3 weeks ago, they only give her months to live. I don't know how true would this be, I have been living in pain since. She is on new chemo regimen now and I will pray for a good respond to her and of course good long-lasting respond will be even better.

I try not to think too much. We can never predict our future. Phil keeps telling me if there is a 20% successful rate of the new chemo drug, why not my mum. This really help! Believe you could be one of those long term survivors!

Best wishes to you my dear,
Dora (hugs)

pscott1
Posts: 207
Joined: Jan 2011

successful. I'm going to believe just like you said; I long to be one of those long term survivors!

Hugs,
Pam

taraHK
Posts: 1961
Joined: Aug 2003

"the average time for me to survive this is 2-3 years"

With all due respect to your oncologist, that doesn't even make sense -- there may be an average out there (probably very updated, due to advances in treatment) -- but you are not an average -- you are one person -- and NOBODY knows how long you will live --- or any of us.

I am one of those who is on "chemo for life". It's been about 8 years since my diagnosis. I've had 4 recurrences -- and I'm still going strong! My philosophy is: I just have to stay one step ahead of the advances in medical science (both traditional and 'alternative') -- which are advancing very rapidly (faster than my cancer!). As others have said -- the drug combo I am on right now might not "cure" me -- it just has to keep me alive long enough till they invent the one that does!

My boys were 10 and 12 when I was diagnosed. They are 18 and 20 now! (and I've enjoyed every minute of the squabling ha ha)

Hang in there, darling

Tara

pscott1
Posts: 207
Joined: Jan 2011

You have no idea how good that makes me feel!!! I feel the same way that as long as I keep good numbers and no recurrence or further spread, I can hang in there until they find a cure for this mess! I am going to stay positive that I can survive this. You truly did help me with your comments about seeing your kids grow up to adulthood. I will hang on that thought for a long time! Bless you!

Hugs,

Pam

gfpiv
Posts: 60
Joined: Apr 2010

Pam, you've gotten some good advice/perspective from folks already. It's very true about how everyone reacts differently, and who's to say you can't be in the percentage that is able to beat it? As you know, there are all sorts of treatment options, and more on the way.

I'm in a similar boat to you - "numerous" liver mets, excellent reaction to chemo, but no expectation of ever becoming resectable...so likely "chemo for life". And yes, cancer - and the associated treatments - really does suck at times, but I am still very much enjoying my life to the fullest extent I can, and counting my blessings daily.

One thing I found helpful in my case was installation of a hepatic pump (HAI), which delivers concentrated chemo to tumors in the liver. True, unlike some people's results, it hasn't shrunk my lesions to where they might be operable, and we don't expect it ever will. However, the monthly treatments themselves are MUCH easier to get through than systemic chemo (which I'm also doing bi-weekly). And I fully believe that HAI has been a major reason I've been able to buy myself disease stability over the past 11 months. Who knows, maybe if we stick it out long enough, that miracle cure will come around the bend for all of us?

Anyway, just wanted to throw HAI into the discussion in case that might be a viable possibility in your case. Best of luck in the battle, it sounds like you have a lot to live for, don't give up hope.
-Chip

pscott1
Posts: 207
Joined: Jan 2011

Thanks for bringing up the HAI subject; I brought it up to my Onc and he did say it could be an option down the line depending on my numbers and how my cancer acts in the future. It's funny how when they tell you "chemo for life" it feels like you're the only one. After getting responses from everyone, I don't feel so alone in this anymore. Best wishes to you also in this battle; I'll be right here for as long as I'm allowed doing my best to enjoy the time I have with my girls! I'm hopeful for both of us.....ALL of us!

Pam

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Dear Pam,
Those words were said to me once upon a time. If I survived the 4 - 6 months by some miracle (it's been 1 year and 5 months now)that I would be on chemo for life, that I would never have surgery. I prepared my video will, wrote my letters, gave my precious things to those who I wanted to have them and felt happy that I had the chance to take care of things.
And here I sit 7 months after my surgery (the one I would never qualify for)and 4 weeks after my LAST chemo that I was told would never, ever end (well, for however long that lasts, which I hope is a long time) time is a good thing, things can change for the better.
So do not despair my dear, do not despair.
Love and hugs,
Winter Marie

pscott1
Posts: 207
Joined: Jan 2011

I'm hoping there's a time for me too to be able to tell this tale to someone who has been shot down with the 'timeframe' speech. I've done the will, beneficiary deed, health directive POA, etc., etc. I can't give up that easily. I'm going to keep hoping thanks to people like you who have been kind enough to take time out of your day to give me that hope!

Love and hugs back,
Pam

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

You need to continue to hope. Get a second opinion as there might be other options out there for you. If others have their tumors controlled and are here 7 years later than there should be that same plan for you.

Kim

pscott1
Posts: 207
Joined: Jan 2011

I felt the same way with my CEA at 1.7...I just have to keep believing. Thanks for your encouragement..it means so much.

Pam

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

To be honest, I'm not sure that I believe your oncologist. I just don't get how he can make these predictions. Does he have tomorrow's lottery numbers by any chance since he seems to be able to see into the future?
First, your tumor markers are down.
Second, your tumors are shrinking.
Third, how does that figure into 2-3 years?

Are the tumors in such bad areas that they can not be dealt with by a resection or by RFA?
I was diagnosed on Feb 25th, 2004 with stage IV colon cancer. My liver was a mess with tumors making me inoperable (at the time). My oncologist was still talking "cure" with me, we never had any discussions other than that. She certainly never took out the crystal ball that some oncologists seem to get. Maybe she stayed in class that day instead of getting a crystal ball? I really have very little "trust" in someone who would give me an expiration date unless I was one giant walking tumor.

True, after the liver was dealt with by a resection and an HAI pump, I had to deal with lung mets which I'm still dealing with, but after 3 operations (2005, 06, 07) I had just a few small nodes in my lung(s) that were (and still are) being dealt with by RFAs. I've also stayed on chemo (Erbitux) but that is more of a targeted type of chemo and while there are side effects, I am able to live a fairly normal life. My oncologist and I still talking "cure" too. So I'm here after about 7 1/2 years.

In the beginning of this whole thing I had no idea what to expect but I had a 10 yr old and 4 yr old at the time. Now they're 17 and 11. Have there been times when I didn't think I'd be writing 7+ years after my diagnosis? You betcha! (Ewwww) Are there times when I'm driving on the highway when some moron almost kills me? You betcha with that too. You never know.

I know that we are all different and respond to treatment differently. I can't say that if you do as I do you will have similar results. I'm also not saying that you won't either. For me, going for chemo once every 3 weeks is not a big deal. If I have to do this for another 10 years, I'll take it. Maybe nutrition is the way to go, others on this site have had great success with that method. There does not seem to be one size that fits all with cancer. If it were me, I'd seriously consider getting another opinion on your situation.
All the best
-phil

pscott1
Posts: 207
Joined: Jan 2011

I know exactly what you're saying. I couldn't get my mind around it either. My CEA is at 1.6, my lesions have all been shrinking and the "typical" expectation is 2-3 years?!! I was shocked. All 3 of my girls were sitting there stunned. I thought things were looking up, not down. I will give this treatment its run and I should finish up around the first week of December. If my numbers continue to be good and the tumors continue to shrink, I will see what his outlook is at that time. If I still have an "expiration date" then I will definitely be looking at different options. I'm not about to give up; I read you and Clift's postings and have since coming here after my surgery and I hang on your advice and experience with this dreaded disease. I admire you for the fight you've put out and I aspire to fight just as hard. Thanks for the encouragement Phil and I will have you in my thoughts and prayers!

Hugs,

Pam

pscott1
Posts: 207
Joined: Jan 2011

I know exactly what you're saying. I couldn't get my mind around it either. My CEA is at 1.6, my lesions have all been shrinking and the "typical" expectation is 2-3 years?!! I was shocked. All 3 of my girls were sitting there stunned. I thought things were looking up, not down. I will give this treatment its run and I should finish up around the first week of December. If my numbers continue to be good and the tumors continue to shrink, I will see what his outlook is at that time. If I still have an "expiration date" then I will definitely be looking at different options. I'm not about to give up; I read you and Clift's postings and have since coming here after my surgery and I hang on your advice and experience with this dreaded disease. I admire you for the fight you've put out and I aspire to fight just as hard. Thanks for the encouragement Phil and I will have you in my thoughts and prayers!

Hugs,

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Pam.

You've had so many words of wisdom come your way, so I don't really have anything to add, except to say hang in there and see what another opinion might mean for you. Never hurts to see!

*hugs*
Gail

pscott1
Posts: 207
Joined: Jan 2011

No way am I EVER giving up!

Hugs back,

Pam

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

My cousin in Florida had breast cancer and it metastisized to the bone and spine.She was given 6 months to live. That was 14.5 years ago. Her success was 1 she was lucky (even though I don't believe in luck) 2 she was diligent in her treatment regimen (she didn't know that word quit. 3 she would travel anywhere she needed to to get whatever shot,chemo,pill,radiation etc that she needed. ( a luxury that all of us can't afford) but she is fine now although she is on maintenance chemo for the rest of her life she doesn't care. She beat it so far and is very happy with her life...so it can be done..Its a matter of a few things coming together....I think its way more doable than we think it is, but we have to take a lot of matters into our own hands to get there, but sweetheart, with the help of these people in here, our Drs and Oncologists and most certainly our buddy upstairs we will get there........love to you...buzz

pscott1
Posts: 207
Joined: Jan 2011

Whatever would I do without you? You so put things in perspective for me and give me the motivation to keep going. I have to believe I'm as worthy of another 14.5 years as your cousin. I'm keepin on, keepin on Buzz.............you do the same!

love,

Pam

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

"when I look at people I work with and know they are healthy and have the luxury of planning for retirement or even a vacation next winter, and I'm not sure how much time I even have, it's so sad."

Hi Pam

Your post brought me back to a time about 4 years ago when I had these same thoughts as you talk about above. Just finishing up treatment for my 3rd recurrence in just 7-years, I don't think like that too much anymore.

But back then all my vacation time was used for sick time, so I got no "me time" while everyone was sailing away on their vacations, I was home "on vacation" so sick I could never think about tomorrow.

And it was funny to know that retirement was out when the guy next to you had just retired and others were planning around. There's always that sense of "Why them and not me?" You're no different than anyone - you, me, everybody just want what everybody else seems to have. It's just human nature - only we've had the mortality issue to wrestle with.

And people always tell you "we're not guaranteed tomorrow anyway." No kidding, what a revelation, you don't say? Know what the difference is between the normal person and a cancer person?

We know we are not guaranteed tomorrow, but the people that use that line are making plans for tomorrow, aren't they? That's because they figure to be here - and we're not exactly sure what's up for us, as you said before.

I've done the same thing with regards to looking at people we think are healthy. I've done it at work and just people watching. I think when we're sick and others are not, we say "Why them and not me?"

And when we're well and someone else is sick, we ask the same thing, "Why them and not me?"

A difficult question with very few answers I'm afraid.

I was told in Xmas 2007 that I would not see Xmas 2008 - they termed it "very unlikely." I had gone Stage IV and it was in my liver then and it did look bleak. But roll the calendar forward to the hot, hot summer of 2011 and guess what? I'm still here. This Xmas will make 4-years from the death sentence they gave me.

I just finished up these past 10-months doing my 2nd lung surgery, 30x radiation treatments with pump and 6-months of Folfiri with pump. We're back to a watch and wait state for the 3rd time - I've had cancer 3x and knocked it back down 3x.

So, just hang in there and fight on and see what happens. Good things can happen.

Take care for now.

-Craig

pscott1
Posts: 207
Joined: Jan 2011

NOW I really feel like a whiner. I'm realizing the more people I talk to on the board that there IS hope as long as you're willing to fight and hang in there.....and THAT, I am! Like Clift said in his last post....I will travel wherever I have to, take as many pills, suffer thru the awful sick feelings as long as there is one more thing out there to keep me alive. Thanks for giving me support and cheering me on. I will believe that good things WILL happen.

Hugs,

Pam

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear pam,

your onc says 2-3 years or maybe its 23 years.they dopn't know. on csn we have so many remarkable survivors here, it could be something about csn. hang around here, we bring out the best in each other most of the time.

the difference in the prognosis is just a dash, one way we miss out on our kids lives the other we probably see the grand kids.

if you are interested read the anticancer post i put up a few days ago about alternatives. i guess i can say that the alternatives are my cup of tea so to speak, but not everyones.

from what i have read i would give my body the best chance to beat crc and survive the chemo. to that means complementary therapies. from juicing to tcm.

i am glad the earlier replies have helped cheer you up, reading a book like anticancer will give you food for thought. it just offers options to enhance many traditional therapies.

i found it pretty positive.

hugs,

pete

pscott1
Posts: 207
Joined: Jan 2011

I actually bought the Anticancer book about a month ago and haven't had time to sit down and read it yet. I'm on vacation next week so maybe it will be worth my time to take a look at it.

Pam

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Winter Marie is right on target. Use the oncologist's words
as the "wake up call" some of us require to get our act together.

The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented.

"Chemo for life" is nothing to fear, and I'm sure Phil will back that
up. He has a fantastic team that's treating cancer as a "chronic disease",
and issuing the right chemical dosages at the right times.

It's one thing to hear the facts and deal with them, and doing the
opposite, by trying to bury one's head in the sand and think everything's
going to be just fine and dandy. Cancer is a terminal disease; it's
called that for a reason. To date, there is no known "cure" for it.

Winter Marie explained well, how she faced it, and took the
time and initiative to get everything in order for all those around her.
It is important to do that. There's a rough road ahead Pam, why
wait until you're wallowing in the mud? It's so much nicer to
know that all the "little things"; all the necessary paperwork, wills,
etc., are taken care of, so you can have a clear head that's needed
to fight for your life.

The problem is when we listen to all those that tell us that there's
nothing to worry about; that cancer is not terminal and can be cured,
that we become complacent and ignore the real facts.

There's a time for "feel good" comments, and a time to wake up
to the ugly reality. You may do very well; some of us have, so
why not you? There's no reason to "lose hope" just because you
are facing facts.

There's an old saying: Keep your friends close, and your enemies closer.
Knowing the enemy and it's real strengths, gives you the ability
to fight it properly.

Get another opinion from an oncologist that is not of the same
group or organization. You are entitled to that. And always
take someone with you to any/all appointments. In the flurry
of comments, we can become lost in our own thoughts and
miss important things the doctor is explaining; having a second
set of ears is a necessity. Take notes and ask for copies of
all reports and scans, etc.

Try your best, not to allow fear to guide you. Fear is terrible, and
can cause you to make errors in judgement. It's as bad as ignoring
facts! Sure, it's scary stuff that you're faced with, we all understand
that all too well. We are all here for the same reason; we all
have cancer. Some of us have been here for a lot longer that
our prognosis.......

I think you'll do fine, Pam. But please, don't run away from the
facts? Give yourself a chance to learn more about what's going
on, and to adjust to the new life of having to deal with this
dreaded disease.

My best to you,

John

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

Much of the attitude you express here I agree with, but I do want to challenge this statement:

"The average time after CRC dx, is indeed 2-3 years. Sometimes
less, sometimes more. The statistics have not changed in nearly
40 years, regardless what you hear otherwise. The time between
diagnosis and death is longer now, only due to the ability to be
diagnosed earlier. That has been proven, and well documented."

The timeline you reference is for Stage IV, and that diagnoses is, by definition, late. Stage IV disease cannot be "diagnosed earlier", and any increases in life expectancy (and there have been increases) are not due to earlier diagnoses.

The other issue is the use of the word average. None of the studies use a true statistical average, rather they all refer to "median" survival rate, which is, literally, the patient right in the middle. So, if there were 11 patients, and one died two weeks after dx, one six months, one 7 months, one 12 months, one 18 months, one two years, and five lived twenty years after diagnoses.

So, there would be a median survival time of 2 years (the patient in the middle), but the individual patient would have a 50% chance of living twenty years after being diagnosed.

It is a valid way of doing statistical analysis for large population groups, but one not well understood by laymen.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You are confusing the terminology, definition, and use of the
terms "median" and "averaging", regarding the data compiled and
formulated to provide a fairly accurate rate of cancer survival.

There is some information here: http://seer.cancer.gov
that may help you decipher the use of both terms and how it
relates to the determination of an accurate prognosis.

(A "median" is usually used in reference to the age of the patient,
while the "average" is usually used regarding "incidence" and
"life expectancy".)

A prognosis is made with the assumption that the conditions
of the advancement of one's cancer will remain the same.

When we change the conditions via diet, medical treatments, etc.,
the prognosis also changes (albeit, difficult to compute; much less
understand).

(My 2006 prognosis had me turning to dust within a year or two).

"Everything is relative" (especially at the reading of one's will)

Best of health,

John

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

Read any of the studies John, they will say "median time to progression" or "median survival"

Median means what I posted above, and it is not restricted to age. The SEER definitions page was using age as an example to explain the term median.

EDIT: adding a comment regarding SEER

The SEER data is NOT specific to mCRC, it only drills down to the general diagnoses of CRC.

Lastly, here is a quote from a paper co-authored by Dr. Lenz of USC Norris in 2008:

"The treatment of metastatic colorectal cancer has substantially evolved during the past decade. Cetuximab and bevacizumab have proven their efficacy in the clinical setting, resulting in a doubling of survival time for mCRC patients."

Best of health to you as well,

Blake

jasminsaba
Posts: 157
Joined: Jul 2011

John23, consider yourself a major BUZZ Kill ... your stats about survival time are NOT accurate specially since you state them with regard to CRC (colorectal) in general. Cancer is an individual disease and for your information, NOT all cancers are TERMINAL.

I suggest you take a long look at yourself and pause before you jump on here and start dashing people's hope with your inaccurate stats.

Just think that you've survived a lot longer (than 2-3 yrs) on Chinese herbs.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

The thing with the "2-3 years" mantra is that, yes, out of everyone who is diagnosed, people may live 2-3 years. That means that the 95 year old man who's a chronic smoker and who is diagnosed with stage IV colon cancer may die in 6 months. So might the 89 year old woman who has heart disease and a wooden leg. Then, the 40 something person may life 15 years after DX and die of something else. When taken on an "average" the numbers may turn into a 2-3 year thing but remember that not everyone is in their 40s, or in generally good health.
That's why I REALLY dislike the whole numbers game, it's skewed and while it may make some sense on paper, in reality it's non-sense.
-p

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Sure, if you are the "average" person, those stats just might apply to you. But there is no way to know. None of us has a crystal ball, including your oncologist. But it is a bit of a wake-up call to make sure you have things in order if you don't already. Just like I did starting into chemo, hope for the best, but prepare for the worst. Make sure you have a will and things laid out for your wishes with your kids - things we should all do anyway. None of us live forever, but most of us tend to avoid the topic of death.

I am on chemo for life. It has been almost 2 years since my dx, and I know for certain I had colon cancer for 2 years prior to my dx (was misdiagnosed for a long time). So I've been living with it for 4 years already, and don't think I'm going aywhere anytime soon. If your only metastasis is in your liver, you might shrink things enough to be a candidate for surgery or another procedure at some point. I will never be. Mine are distant lymph nodes only - chemo for life. The times I have had a short break or maintenance, I progressed quiickly. I have to stay on Iriontecan to keep it under control. So it is just like managing other chronic diseases with frequent labs, scans and chemo.

The reality is you could have something freak happen and be gone next month. Or you could keep the cancer under control for another 5 years, or you could shrink things down to a level where you do qualify for surgery or another procedure and maybe even become cancer free. No one knows. For now you take it one day at a time, and keep fighting for yourself and for your kids! Be realistic, but keep the hope!

pscott1
Posts: 207
Joined: Jan 2011

and you're absolutely right. I can only control what I can. I have a great friend who is an Estate Planning Attorney and she did my will, living will, POA Health Directives, Beneficiary Deed, etc for me at no cost. I made some bad choices on not choosing term life insurance in the last couple of years but who knows, like you said, I might get to a point where I can have surgery and might not have to be on chemo for life. I don't know but like you said, neither does my Onc really. I can only take one day at a time, make the best choices about my treatment that I can and hope for the best. Thanks for your input; I really do appreciate hearing from others who are going thru the same thing.

My best,

Pam

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