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New Historic Low for My CA19-9 Test

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

"74"

The reference marker is good for anything under <55

But, this is the very best number I've been able to achieve in just over 8.6 years of fighting.

In my early days, I was in the high 600's....over the past year or so, I've still trended between 174-260.

So, as I was reviewing my new CEA level...2.8 and trending a tenth of a point up or down, I saw that my CA19-9 had come back.

Many of you are probably not being tested for this...the test itself is used as another marker stain for rectal cancer...I ended up doing it, because at the time, it appeared that cancer had gone to my pancreas....and CA19-9 is the marker for that.

So, 74 and 2.8 are sounding pretty good....

It appears I'm still kicking cancer a$$...and I'm doing it the "natural" way.

It's completely organic...it doesn't cost any $$$... and it doesn't even take a trip out of the country to have it.

I'm taking absolutely nothing...not scared or even worried about that...it is what it is...and it will be what it will be...I'm still pretty convinced about that.

Otherwise, why am I where I am?

Just more proof for me that sometimes doing nothing - can be something.

I think my case continues to dispell the myths of what fights cancer...at least on my part.

I get up every morning...and whatever my body has that morning, I have...if I don't have it, I do just fine without it.

Sometimes, nature just provides you with what you need. It takes a little help to get us there....surgery provides a big leap towards that goal. And adjuvant treatments play their role as well.

I want to take this opportunity to thank Pete...it was his zealous approach to the cure, that dissuaded me from the then supplemental approach...I became "Alternative to the Alternative."

I became determined to show that there is another way...that just holding was a strategy for me to consider.

And I've been kickin' ass and setting new records every day without supplementing or any of that type of approach. And I'm going the longest time in a remissive state than ever.

Whereas the supplemental approach and all of that, netted me two recurrences.

Of course, I've got a theory about this now...and we're going to talk about it in 2013.

So, my message is there are many ways to reach a remissive state...so far my case goes against what the journals are telling us...that's really all I'm pointing out...it does make you think though...it is interesting...and it is true.

As we look towards one another...I feel all our examples tell a part of the story.

-Craig

8.6 years = 102 months and counting...

Annabelle41415's picture
Annabelle41415
Posts: 4209
Joined: Feb 2009

Awesome news. You have been through so much and have come such a long way. Well I've got to admit that supplements are in my diet daily, a vitamin, calcium, C, D3 and probiotic. Doesn't cost me much though as with CVS you buy one and get one free. WTG guy - you deserve the good news.

Kim

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Just bloodwork...got excited over that number...I usually don't get carried away:)

LOL!

Scans Feb2013...21 mos out...if news is good, I might even crack a smile - or a fart - whichever comes first:)

LOL!

C'mon Kim that was funny right there:)

-Craig

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I guess we can both sing the song

"i did it my way"

and as some wise guy said "if it ain't broke don't fix it"

I am glad you ain't broke and i hope you stay well.

Alas I am broken and going broke go figure, the peritoneal mets are a pain in the ass, opps sorry pain in the abdomen. no good surgical options there for me, you know the story so far.

lets just say the supplemental approach let me down also, but maleria caused my recurrence, that good old inflamatory cascade i suspect. the difference i still see many merits in diet, exercise and supplements and that includes off label drugs.

to each his own ....

stay well.

hugs,
Pete

ps the red wine I am enjoying has taken the edge off the zealousness of youth. I was so innocent when i was stage 3.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I am closely watching how you are doing...if it works and could become available in the states...that would be wonderful...it would be nice if we could all be painted with the same brushstroke:)

I've noticed you cheating lately with the vino and cheese...gotta be better than sea cucumber, eh?

I tell you what I am onboard with...I do agree with you that INFLAMMATION is definitely part of the problem here...that's such a part of this puzzle.

My way is not right...I wouldn't advocate it...but I tested a theory (like you)...and I willingly risked my own life (like you).

I might recur again, might not.

I just think we can get paralyzed with such fear that we're not doing something all the time...and while I'm trying this, I share it for what it is worth (like you).

It's important to show the people all sides of the triangle.

You and I may never know what's right, not really.

I just see my numbers lining up nicely...except platelets. I'm getting stronger every day...taken me 18 mos...just seems like I don't need to add anything to my body chemistry...to my amazement, I seem to be improving.

I continue to wish you best of luck...you know I gotta' keep you honest, Pete:)

I'm the Yin to your Yang...

On a side note...my dad's hoarder house has broke me like cancer never could. I have an empathy towards you now dealing with all of that...I just don't know how you do it.

That's just no way to live...I know your hands are full there...I've seen the show...seen the sickness...and I have no stamina to deal with it.

My mom has it too...bit it skipped me fortunately...lean and mean around here.

Have a good holiday with the family.

-Craig

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

dear craig,

your story is one of hope and survival, persistance and inspirition, where does the will to keep fighting come from ? from your story thats where. dear rick just passed, he had peritoneal mets and massive surgery(i am on the list for as well)ricks did not work. i may do that surgery, but its so massive, i will try all else before using the last get of of gaol free card and to get ready for it. we adapt and learn from each other, the quicker the better.

its just your ca199 is a great result, personally i have never had a ca 19-9 test, all these doctors and i have asked, even in germany, i will ask for it again. for the 100th time. but my cea is 39 down from 100 in 7 weeks with a range of alternative therapies, none of which you can get in the states. i will update my removab post with cea results.

honesty is one of my goal values, and i have often told the truth when in some ways i would have rather not. even sharing the story about my wifes hoarding disorder was embarrassing but ultimately liberating. i actually had to see it for what it is, she is still doing it and i am filled with dreade going home in a week. keep me honest if you want too, if you feel I need it, its your choice, its a public forum and your free to write your replies. what helps me personally is the support and being challenged.

this post is about your success and your strength and your skills at sharing a great story, your story. hope and being relaxed and inner strength are all attributes you demonstrate. they help me enormously, but what we have in common is far greater than our differences of opinion re supplements. and my friend what you call supplements and what i call supplements are completely different.

craig think of me like columbus. when he found you guys ( USA ) all those years ago. his friends said be careful the world is flat you will fall off. your country was discovered in some ways by spanish pioneering spirits. I some ways USA has lost that edge. I have met far more aussies at the clinics here than other nationalities. maybe we are fools or geniuses. maybe elements of both.

as you said time will tell, its so true and for us all.
time also heals, you are the proof, we can help speed that up with surgery and supplements and lifestyle. its 7 years for all our cells to be replaced, your improved bloods shows our innate healing capacity.

my mission is remission, when i am there i will relax more, until then its a more relaxed but still zealous approach to treatment. the cancer is on the run and i am not going to give it another chance, not while i have breathe.

be well and smile, I am, your story is an inspiration. thanks. enjoy your health.
the seacumber (none in germany) smoothies were horrendous, i cringe at the memory, some of the things i have tried.

hugs,
Pete

ps removab clincial trial in usa i think, but not the off label use i had and dr chang offers dendritic cell vaccines from germany like i am having monday. its sad but money buys better health care, but thats a discussion for another time.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

on the supplementation corner steps pete.

pete lands the first punch.
what about vitamin d supplementation ?
especially for all colorectsls ! see the recent post.

hugs,
Pete

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

if you don't get your Vit D from a pill, you just don't get any Vit D at all! Sometimes ya gotta add a little something here and there whether you have cancer or not. AA

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

Woooo-Hooooo way to go Sundance!!! You are truly an inspiration to us all!! Kim

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Soooo glad to see you again, Kim:)

Thank you!

I know you've got your hands full right now...when things get settled for me, I hope to chat:)

-c

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

Well now, that's more like! Keep those numbers go'in down!! This is the best news I've heard all week. :)
Luv ya,
Cyn

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

You know dam well that cancer (ain't) taking me anywhere...I'm "Calling the Ball" for now.

I've crushed my adversaries like cheap, aluminum beer cans this year...nothing can ever stop me - but me.

Just imagine what I could do when I get both hands free?

Stick around with me for awhile and find out:)

You made me grin tonight...and might I add that I'm just so proud of how you are handling things...I know you hurt...but I also understand how being around us gives you a sense of protection and a strong connection to life.

I got eyes - I see things - and what I see through all the pain is Cynthia:)

I see your spirit wriggling all around and coming out in bits here - pieces there.

Just keep wriggglin', Cyn...don't stop moving.

-Me

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

Double post - so I guess I'll say it again - congrats my friend! :)

MadeInMichigan
Posts: 35
Joined: Nov 2012

This not only gives me hope for my mom, but gives me hope for everybody.

This is fantastic news. 102 months? Insanity. Is it safe to assume it is stage IV..?

Hopefully one day there'll be a cure.
One day soon.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Technically, I'm a metastatic stage IV.

Wanna' hear more good news?

I'm claiming my biggest victories during the 8th year...it's almost unheard of really...one doesnt expect to be winning in the latter stages of the battle.

4 major surgeries...51x chemo...55x radiation...3x Cyberknife...rectal, liver, and lung.

5-years almost to the day in 2007, a liver panel of surgeon, rad oc and liver specialist concluded that it would be "highly unlikely" I would see the following Christmas.

But...

I looked at the calendar...and by golly...it's Xmas 2012...let's see, subtract 7 from 12...hey, that's 5-years!

LOL!

Now slide that story under your Xmas Tree - HO HO HO!

-Santa Craig

MadeInMichigan
Posts: 35
Joined: Nov 2012

People like YOU are why I get frustrated with my mom, and I mean that in a good way.

Her head's down like she has no chance of living more than maybe another year or two, but the truth is, it isn't over until it's over. No cancer's SEEN in her body (though her CEA is 92), and she feels alright for the most part.

...SUPERMAN DOES EXIST!

jen2012
Posts: 1188
Joined: Aug 2012

Give mom a break...it is hard when you listen to the doctors! She may be trying to prepare you too. Have you read any of these great stories on here to her? My husband wont come and read them but I tell him about everyone here!

Yay Craig. ... keep up whatever you are not doing :) and Pete keep up what you are doing! Whatever works.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

You are such an inspiration Craig and deserve happiness and peace.

I am now on my 2nd reoccurance. You and the kind folks on this board have helped me during many dark days and evenings.

It's these stories and willingness to share that keep me going.

I believe exercise, supplements, lots of humor and love, whatever works, take it and hold it tight to get you through the ups and downs of this disease!

Barb

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

That's nice of you to say...I've been sewin' it - one day I hope to reap it:)

Recurrence is a very hard road...I've gone 3x now myself. I'm glad to be a part of your story and to have helped.

Sharing is where it's at...in that regard, we are blessed to have a front row seat into one another's lives...we share, learn and experience with one another at a level much deeper than your average relationships.

People just stay on the surface most of the time...cancer strips us naked - and with nothing to hide behind, we can just be who we really are.

-Craig

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Maddy

I think that's your new nick for me:)

When I first came to the board, I told the group that I had long ago removed the "S" from my chest.

Your last line buzzed me...I went into a phone booth and my old outfit still fit me, LOL!

In your honor, I changed my avatar for the evening - just for you...figured it'd be good for a grin...you sound like you need it.

Tell mom to get with it:)

And to put the shovel away:)

Stay tuned to the Sundance Channel.
"Story Matters Here"

-Craig

herdizziness's picture
herdizziness
Posts: 3390
Joined: Apr 2010

You go my friend, you go!!!!
Happy for you!!
Hugs and love,
Winter Marie

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

So, I can do anything:)

Get Well Soon, Winter:)

You haven't outgrown me yet:)

LOL!

Love/Craig

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

Craig, what wonderful news. A Christmas Blessing that we all can enjoy.
Hugs, my friend,
Judy

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

...the whole year 'round:)

That's what you and this board are to me, J:)

Now, please pass me a tissue:)

I'm losing weight...down a waist size now...so, there's less of me to love...but, I still got plenty to go around:)

-c

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

That is just great, Craig.
~Audrey

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hi Aud:)

Did you think I could still be shovelin' it after all these years?

LOL!

-c

ron50's picture
ron50
Posts: 1267
Joined: Nov 2001

Cancer does not have patience,you are persisting it to death. Best wishes mate. This board has been a diary of your life ,I am so glad it is heading for "happy ever after".Ron.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Or G'day:)

You guessed it right, Ron...that's been the plan all along...Time and Patience are the keys to my success.

Outlast...that's the secret to everything:)

Diary is a good description...the pages of my life have been scattered around here like ashes thrown upon the winds...

Thanks again for being a part of it...

-Craig

wolfen's picture
wolfen
Posts: 1176
Joined: Apr 2009

Really happy to see those results. See, good things come to those who wait.

We kind of have mixed opinions about supplements in this household. You know, what's good for the gander may not be good for the goose. Except, in this case, it didn't help the gander much. Hubby has always been the one with healthy eating habits, taking many different types of supplements, quit smoking 25 years ago and look where it got him. I'm the one who eats all the wrong things, don't sleep much, don't do any extra exercise, and still smoke. Except for high blood pressure, I'm in pretty good shape for my old age. KNOCK ON WOOD Of course, no one knows the future and I could get sick tomorrow.(after my yard sale, I hope) I know that I am a pariah because I smoke, but I am always respectful of those that don't. I have to have at least one bad habit.

Anyway, I appreciate your viewpoint on this as well as Pete's. It just seems Cancer doesn't pick and choose, no matter how healthy you try to be.

Luv Ya,

Wolfen

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

Christmas present I got reading your post!

Shows what can be won by never, never, giving up.

Gonna call you Billy Bad @ss.

Merry Christmas!

Angela

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I did a doublecheck when I saw the word "Craiger."

It reminded me of Jenny:)

She used to call me that.

Heading out to my "Yard Sale" now....

LOL!

Did I just actually smile at you?

Luuuuuuuuvvvvvv!

steved
Posts: 836
Joined: Apr 2004

Your marker results are great news- are you still having any scans these days or just bloods?

I appreciate your decision to go with no active conventional or complementary treatments at present. In each stage of this journey we decide what is right for us and we need be able to change and vary that as we learn about ourselves and our illness. Having just been through a very active phase of surgery it has now been decided to not go with chemo (joint agreement with my docs) and I don't really do complementary stuff so I too will be joining you in the living each day doing what I wish (in moderation) and seeing how it all goes.

Each of us lives this journey differently and this community has always respected and thrived on that (with the odd blip admittedly!)

Carry on carrying on. Whatever you are and arent doing it seems to working.

Steve

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I'll start with "W2Go!"

You put me out of a job, you know that, right?

:)

I'm really happy to see what you are overcoming...I know we do what we have to do, but still...you rock, man. I tip my cap...

Just labs this time...next scan cycle Feb2013...21 mo mark then...I'll either blow the roof off this place...or, we'll stay with Door #1:)

I just briefly got that excited feeling...weird for an ol' vet...I was borderline giddy:)

That number has always been high or way above the average...I just got that feeling like I won one, you know?

Moderate approach here too...the "Graze and Sample" approach allows us the opportunity to taste and still feel connected.

What is Life without some of the Five Senses?

Taste - Touch - Smell - Hear - See

Let's see how far down the road is blacktopped:)

-Craig

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Anybody else with stage 4 and mets to liver, lung, peritoneum (plus lymph nodes) not have a high CEA??? When I was first diagnosed, my CEA was like 6 (barely above normal), but the determination was that my tumors were quite fast growing and aggressive. Since that first test, the doctor's have never even had my CEA checked again. I am seeing a local onc for chemo, but also have an onc at Northwestern Memorial in Chicago (one of the top rated cancer centers in America), but neither one has ever ordered a CEA test since diagnosis. Does a low CEA mean anything wrt survival time?

Tedd

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Tedd
Hi. My CEA is 10.9-I have reoccurence of 2 new lesions in liver and a lung met that has grown.
My oncologist at N. Western says she looks at the whole person...
I have had moderately differentiated tumors but will know more in the next two weeks.
Have a pet scan on Tuesday.
How is it going with local chemo?
I dread going to the city if chemo is next step.....
Barb

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Who is your doctor at Northwestern? I am seeing Dr. Halla Nemeiri, and she has been great. Maybe we have the same doc....

Tedd

ron50's picture
ron50
Posts: 1267
Joined: Nov 2001

CEA is one of those subjects that everyone has an oppinion on but hardly anyone including doctors really know a great deal about. About the only practical use seems to be as a possible marker for recurrence. I had an aggressive stage 3 tumour into six lymph nodes. My cea at dx was 2.8 . At present it is virtually undetectable at0.4. I have had no recurrence of the ca and have been free of it for over 14 years..Ron.

thxmiker's picture
thxmiker
Posts: 1202
Joined: Oct 2010

That is great news! I believe Cancer is a multifaceted battle. It starts with mental strength and eating right.

If you have a particular diet, is it on your wall? I eat real foods and make everything from scratch. No boxes or cans in my house. We do the juice thing once to twice a day. Juicing is difficult on one in the beginning and we are easing into it. (A lot of Bathroom runs, no pun intended.) My wife lost 35 lbs and I lost 55 lbs.

Best Always, mike

PS Go slay some dragons!

Lovekitties's picture
Lovekitties
Posts: 2902
Joined: Jan 2010

Wonderful news and a great gift to Santa Craig just in time for Christmas.

Wrap it up and put a bow on it!

You deserve all the good news there is to get.

Hugs,

Marie who loves kitties

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

Craig this is outstanding news!!! and this upbeat attitude you have is what we love to hear about! you better celebrate!!!
hugs
judy

smokeyjoe
Posts: 1428
Joined: Feb 2011

First you made me smile.....then you made me laugh out loud....I needed that today!!!

annalexandria's picture
annalexandria
Posts: 2184
Joined: Oct 2011

And I'd be willing to bet some cold, hard cash that those scans next year will confirm the good news. I'm in the "not really doing much of anything" camp myself, and kinda enjoy it there. Hugs~Ann Alexandria

Dyanclark's picture
Dyanclark
Posts: 248
Joined: Apr 2012

So what is the diet and what organic products do you use

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I'm not really on any kind of specific diet for cancer.

My diet has been just terrible this year...my wife and I can barely pack a lunch for work...and we don't eat at night during the week anymore...her schedule has been moved down to later nights...and on weekends, we've been lucky to get anything to eat at all...we've been running 18-20 hour days for the last few months...totally exhausted.

I've had my dad's care...death...and estate business since Jan12 and we're still working very hard to get the house ready for market.

Lots of stress, not good eating, not good sleep...lots of hard physical work...lots of mental planning and work...on overdrive must of the time..not taking anything for anything...and posting the biggest victories of my entire fight.

Lately, I have switched to a potato soup diet as my sustenance for lunch...have lost a waist size...sometimes a cup at night or a bowl of cheerios...that's it...I use 2% organic milk with DHA (plant based) for eye, brain and heart health support.

I try and eat better when I can...I plan to resume walking now that I've got that problem fixed.

I try and do everything now in moderation...I sample and sometimes indulge...but I try and not wallow in it for too long...it's been more about rearranging the caloric intake and saving them for another time when I want to use them.

I'm starting to look better...

I was trying to show that even though I have not done things that the medical journals tell us is correct...I've been doing very well despite the findings.

I can't say I've done too much right this year...living my dad's life in my after hours from my job has not provided us an avenue for clean living.

We're just scrambling right now...I'm like a hungry wolf...half the time I stand up and pace the floor when I get the chance to eat anything...I never even sit down...literally gnawing so hard I bit the inside of my cheek off last week...and you know how you keep biting those areas one they are created?

Ouch! All week!

I'm literally an animal right now...just trying to survive...I drink some water where I find it...and I eat where there is time or something....we're on the prowl all the time...in the car...driving across town to handle his house and his business...and then back over to our side for the same...

I hope to be exercising soon...and that after things finally get to some kind of temporary resting spot...that we can begin to incorporate the few meals we eat together and make them as good as we can.

Dyanclark's picture
Dyanclark
Posts: 248
Joined: Apr 2012

So what is the diet and what organic products do you use

Dyanclark's picture
Dyanclark
Posts: 248
Joined: Apr 2012

So what is the diet and what organic products do you use

Dyanclark's picture
Dyanclark
Posts: 248
Joined: Apr 2012

So can you tell me what your method is. Is there a website for the organic diet for cancer

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

I just logged on and saw your good news. Congrats my friend, good job.

Love and Hugs - Tina

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

....just seeing you:)

Love & Hugs T:)

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

When are you going to post an image of your new svelte self? (I remember you posting somewhere that you've gone down a waist size. Congratulations on that too.)

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

I'm still too big to fit in the lens:)

LOL!

-c

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