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does this mean i am stage 4 now ? need some prayers and rainbows

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

Dear friends,

its back, my old enemy must have been hiding!

i have had a few tears recently. I don't want to be a downer but where else can i go.
I guess I am on the cea bandwagon now.

The conference was fantastic, a wonderful, educational and inspiring weekend.
I got home and had my regular blood tests and cat scan.

I got some challenging news, my cea was 6 and previously its always been nil since surgery 14 months ago.

The cat scan was clear, nothing found anywhere. so i suspect i have a small crc somewhere, thats not visible on the cat. the joys of crc.

So tomorrow i have a pet scan, send me a rainbow if you can. I have had a few tears as
now i am back in the cancer game of life for real.

My surgeon and onc seemed very concerned and just put me in for the pet immediately.

My surgeon indicated that if surgery is an option it will be early january.

Still meditating, juicing, taking supplements, tcm and exercising. I am the healthiest and
strongest I have ever been and now its time for the second set.

I still have faith that my alternatives have helped me. Anyway tomorrow is another day
I can rest and take it easy and get pet scanned. at least now i can meditate for the few hours the test takes.

A few kind thoughts and prayers coming my way would be appreciated.

God bless us all.

hugs,
pete

janie1
Posts: 753
Joined: Apr 2011

Sorry that the cea is causing concern. If it is something, knock it out, cut it out, whatever it takes and keep doing what you are doing. You'll be the winner

taraHK
Posts: 1961
Joined: Aug 2003

Hey Pete. Sorry to hear about the CEA. Your doctors and you are, of course, completely right in taking the rise in CEA seriously and in thoroughly investigating. However, I'm still going to consider it a "blip" until more information comes in!! The wonderful expression I learned on this board "Feed the faith, starve the fear"....If it turns out to be not-so-good, I know you will tackle it with your usual style and determination -- and, I hope, with the love and support of our loving friends on this board. Until then -- keep breathing in and out!

Love,
Tara

buckeye2
Posts: 428
Joined: Jul 2011

I haven't heard this expression before. Now it's my new motto. Lisa

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Pete, hopefully it will be a transient mystery meat elevation.
-------------------------
Near this point we ramped up from inadequate stage III daily chemo (nominally CIM-300mg UFT-PSK) to a stage IV dose including leucovorin (at last) CIM-UFT-LV-PSK, along with mostly natural adjuvants between "checkerboarding targets" and "kitchen sink". The idea, +- stop/slow growth of the exisiting met is good, to prevent more mets is crucial. We chose daily treatment, 24x365 no breaks - not too bad with supplements and special diet, as our best way to inhibit new metastases based on the literature.

It's nerve racking, because you hope you've got it contained correctly, where for one reason or another you have to wait. In your case, either the CEA turns out to be a fart elevation (hope, hope, hope), or something eventually swims into view after so many months, so it can be cut out. In our case the wait was the argy-bargy of getting a surgeon that would do the job, "We've got it contained, now cut the smokin' thing out. Please!". We pay for our own CA19-9 blood tests - we didn't have time to educate the (measly) insurers or oncs. COX2 tissue marker has been slower for us, but we hit COX2 anyway, mostly naturally. The first CA19-9 test is the most important one, preferably before first surgery.

We focus on tight spaced CBC, ESR, CA19-9 and CEA for "progress reports." Out of our pocket. Btw, to implement the plan, we would up using other doctors rather than oncs.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

sorry to hear about your rising cea.try not to think about the worst and hope for the best.prayers are with you and yes keep the faith....Godbless....johnnybegood

tko683
Posts: 265
Joined: Aug 2011

Pete,
You have an amazing attitude....and it sounds like you are doing all the right things...I will pray for good results with your PET. Hugs, Teri

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

Maybe or maybe not, Pete...

The CT is clear. Even if the PET lights up, that's not an absolute indicator of cancerous activity. Perhaps, but not definitive.

I had a situation where the CT showed a mass - the PET lit up with a high SVU value - we did surgery and biopsied - and that tumor was benign. The only one that has been, but still....all the tests leaned one way and when we cut it out, it was a complete 180. My CEA was raised as well, but not outrageously so.

So, even if the PET lights up, you have to ask yourself do you really want to do the surgery at this moment? Or give it another scan cycle to check growth and monitor your CEA to see if rises?

If it's not seen on the CT, then it's too small to biopsy - and even if you could, would you be able to trust the findings one way or the other? Biopsies are 'hit and miss' anyway, but especially when they are this tiny.

I'll hope that this is something else right now, but agree that getting things looked at is a good idea. If things become what we don't want them to be, I'll talk with you some more - but for now, I'll table what I wanted to tell you, if or when, we get to that spot.

It won't rain in Texas, so I can't send a rainbow, but will send good thoughts your way.

As your countrymen say, "No worries, mate."

-Craig

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

I cried when I read this. I'm praying for the best for you.
Linda

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

chance to be NED, y pray for that I'm sure it's only a false alarm!.
Hugs my dear Friend!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

George and I know very well the kick in the gut feeling you are experiencing now. Sometimes, even when we do everything we possibly can, that sneaky cell decides to act up. Rising CEA is concerening but 6 is still low. Sounds like your docs are on top of it. Craig gave you some very good advise. Take it one day at a time, one test at a time and do whatever is necessary and what is right for you.

Take care - Tina

laurettas
Posts: 372
Joined: May 2011

how nerve-racking for you. I agree with everyone to keep breathing until you know something for sure. Maybe you just have an infection or inflammation somewhere. We will be praying for that. You have worked so hard--keep up the positive outlook and we'll be cheering for you!

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

You are in my thoughts and prayers for a clean PET. 6 is not very high as the high normal is 5 so you are only 1 point above normal. Hopefully it was a misreading. I'm thinking it was NanaB whose CEA kept going up and she had a PET and it showed nothing. Sometimes it just goes up. Good luck and keep the faith.

Hugs! Kim

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Pete,this is definitely not the news we want for you,especially in this holiday season.I hope this is going to be a minor problem and the doctors can take good care of it.You are in my prayers.Best wishes to you.

jasminsaba
Posts: 157
Joined: Jul 2011

Pete - I'm praying for you. I hope that the rise in CEA is nothing and that you continue on your path to a full recovery. Blessings to you and yours.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Has had her cea rising up and down, thankfully she's ok. I hope and pray there is nothing sinister going on. Cea is also used to test inflammation in the body, could be anything, might be a virus. 6 isn't a huge increase, but can definitely understand your fears. It's good your medical team are being proactive.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

The news all of us fear....................holding you very tight right now Pete.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Sending good thoughts and prayers your way...

God bless you as well.

Cyn

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Hang in there Pete.
Good that CT scan showed nothing. My last one showed small nodules on lungs so I'll be getting a PET scan also. (29th)
Praying with you bud.

dmdwins
Posts: 453
Joined: Aug 2008

Hi Pete,

My case may be different from yours in the fact that CEA has never been a good indicator for me but I wanted to share this with you because that CEA can do quirky things.(and drive us crazy)

Even though my CEA was normal at diagnosis of Stage 4 (3.9) my onc has always still tested it since I currently have no evidence of disease so we really have nothing else to go on but scans every 6 months. It has ranged from a low of 1.7(post chem) to the high at diagnosis of 3.9...until last December it was 6.0 (had it tested the day I came back from my visiting my very ill grandfather) ...of course I was a little freaked out to say the least....I had a CT ...nothing.....had a Pet ....nothing....I too thought where is it lurking...there was nothing else to do but wait and retest my CEA (though I think if I had really pushed my colorectal surgeon might have scoped me....my onc was NOT on board with that HAHA) so we waited and repeated...next time 4.1 ....next time 3.7 and I was not in any treatment. So I am holding out hope that your CEA is just doing a quirky thing!!

Dawn

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I'm so sorry to hear about the rise in your cea. I'm praying that it's nothing and that only happy rainbows come your way. Smile.
Karen

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Pete,
Of course I am holding you in my prayers. We had a beautiful rainbow over the island this morning and I believe it is for you. Be strong my friend. Yes, the tool of meditation will be good in the scan.

Aloha,
Kathleen

wolfen's picture
wolfen
Posts: 1320
Joined: Apr 2009

You are such an inspiration to so many here. Many warm thoughts are on their way. As many have said, maybe the CEA rise is caused by something else. Please keep that smiling face and positive attitude. Cancer hates that.

Much Luv,

Wolfen

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Holding on to the best of thoughts for you Pete!

Hugs, Gail

k1
Posts: 220
Joined: Dec 2009

My thoughts and prayers are with you.

Try to enjoy the hell out of all the time you have before you have the scans and before you may (or may not) have to have surgery. Keep doing all those positive things you have been doing mentally and physically. Stay strong! Keep enjoying the time with your children as you have been.

I'm sorry to say I wasted good time in life while I was feeling great from March to May of this year going through the same things you are now going through...worrying about rising CEA, having a CT scan that showed nothing, having a PET scan that also showed nothing, then finally having an MRI that showed something and ending up having a liver resection in June that really weakened me for a time.

Now here I am, back on my feet at least some of the time even though getting regularly knocked down by chemo too, also having rising CEA every month again when it was also down six months ago right after surgery, and wondering what my halfway-through-chemo MRIs and CT scan will show after I have them next week.

Again, my thoughts and prayers will be with you in this period of limbo for you to find out what is going on, and I hope for the best. Your journey has inspired so many.

K1
I hope I can maintain a more positive attitude through this process than I did last spring and not waste good living time consumed by fear and worry on a constant basis.

relaxoutdoors08
Posts: 520
Joined: May 2011

K1,
Wishing you Healing Prayers. Wishing you Daily Relaxation and Joy with your Pets.
NB

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

my little boy keith 6 years old is looking at me, he said "why are you smiling."
at the time i was just reading all your replies. they have really helped. alot.

I honestly hoped all my alternatives would give me an edge, maybe they have. still i have a new challenge.

so i breathe and maintain peace of mind.

plan for the worst, hope for best!!!! thats been said here before.

and i will keep the faith.

yesterday i met my onc for 15 min, she handed me the pet order, will see her monday to discuss results and have game plan conventional outlined. from there i went to a brand new personal trainer to focus on weight training to gain muscle mass. he gave me one month for free, that six days a week. been twice and its excellent. they even help with stretching. then i went to the best cancer specialist doctor i have met so far. spent about 90 minutes with him, he reviewed my anti cancer life, he made many suggestions and improvements. he made constructive comments on all my supplements I MEAN ALL. i asked him if i was in the top ten of cancer patients, he said "yes". what does that mean anyway. i guess i wanted some reinforcement for all the effort i have put in, and the results so far.

I have so many resources around me i feel humble and privileged. just dam lucky, my support team gawler foundation, quest for life, paul, ashley, anvi, theresa, tracie, brett, chris, sue, greg, tammy, alison, eva, darren, gareth. these guys are nds and doctors and nurses. I have everyone here with more combined crc experience and memory than any other board. i am glad ron and graig and emily have been around for so long. everyone of us here on forum 128 is special. lets keeps on posting and living and having fun.

meanwhile i think i have a 6 week window to give some alternatives a try. number one at present is hyperthermia and and iv vit c done by the only doctor in australia offering it.
the doctor is a legend, very impressive in the flesh. i got to know him at the conference on the weekend. cannot see a big downside to this treatment. it seems good value. and can happen before any chemo. they will not do chemo here until they can see mets on ct.
http://www.alternative-cancer-care.com/Hyperthermia_Treatment.html
http://www.ncbi.nlm.nih.gov/pubmed/22110227

so what happened today,i did the pet. got lost in the hospital basement. turned right when i should have turned left. if you go in the wrong direction you end up in the morgue. I am not kidding you. I took a photo, just had to, and said well one day but not today!

i saw my local doctor first thing this morning, he completed the analysis of my bloods. my vit d is 209 nMol/l how fantastic, just a bitchht about the cea. ha ha!!!!!!!!!!
Its not toxic so i will stick to 10000iu a day.

while i am a free agent i am going to hammer vit c orally 3 x 1000mg breaky lunch dinner.
not much to loose in this game now.

really working hard to perfect and stick to my protocol. i am weight training 7am six days a week, i am meditating for 6am daily without fail. being a bad vegan, added in some protien as advised lets say 50-100 grams a day. mainly fish or seafood.

the crc or me is going to hell and soon. now the way i am praying i am sure it cannot be me. my daughter and i looked at the pet results, no report. neither of us could work it out. she said i have an upside down smile. i said "mum, keith and her is great, i'd be crazy to be happy while facing the risk of leaving them to soon", then she smiled and hugged me. she is 10 going on 100. her hugs pull me through. my wife has been amazing we meditated in the pet waiting room for 30 minutes holding hands. these alternatives are so easy to put into practice. i know they will help.

the best to last. yippe i can reapply for disabled parking permit now my crc maybe back, so while waiting for my renewed permit at our motor registry, this very old lady sat besides me, she was hard at hearing. we smiled and she started complaining about all the problems she faced getting old and driving. she was over 80. i thought do i tell her about my cancer and pet today. "no" i just smiled and listened and chuckled to myself. she would have thought a pet to be a dog or cat anyway.

its my new medium goal to get to 80 and to be winging about my frailities. i looked her in the eyes, gave her a little pat, a big smile and said loudly that i hope she has a wonderful day.

each day is a bit more precious now the crc has risen.

hugs,
pete

buckeye2
Posts: 428
Joined: Jul 2011

Well your new anxiety has not affected your resolve, attitude, or sense of humor. The wrong turn and ending up at the morgue is a little funny. I hope your anxiety is lessened by the news on Monday. Keep staying the course. What works is what we believe will work. Lisa

laurettas
Posts: 372
Joined: May 2011

your life is always an adventure! Loved the story and keep on keepin' on thru this next adventure, whatever it may be!

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

My doctors wouldn't allow me to have one. They wanted me to park as FAR away as possible, they encouraged the walking.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Pete,

Sorry to hear the CEA is up. The waiting is so darn hard, I know! I am hoping and praying that the PET report you see on Monday will show nothing and that the upped CEA is just a fluke. I'm here cheering you on and praying too- take care-

Lisa

relaxoutdoors08
Posts: 520
Joined: May 2011

Pete,
I had a low CEA before surgery of 1.0. Post surgery pre chemo .5 and post Folfox .6 and at one year post diagnosis .5. My Mayo Oncologist decided since so low before surgery we would no longer do the CEA test as not reliable. In Arizona, I had my port flushed at another Cancer Center (not Mayo), this oncologist felt that I should have my CEA checked every 3 months and if it went above 10 yes 10 then we would start the scans earlier than every 6 months. Here is hoping that your 6 is just your body's response to your new healthy regiment or something unrelated. BUT it is good to have the checkup to be on the safe side.
NB

th_in_canada's picture
th_in_canada
Posts: 46
Joined: Nov 2011

Hope all goes well on Monday for you. I love your big smile in your picture.
Tricia

here4lfe
Posts: 306
Joined: Jan 2010

Pete, I've been tracking you. You're in-tune with your body, and your attitude is upbeat. Take the tests, treat whatever, then get back to running.

Best

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I went from 2, to 4, then up to 6.5. Then down to 6, just last month. With nothing showing on the pet or ct. Just keep doing what you're doing. Don't stress.

It is, what it is, we have keep on pressing forward!

Hugs!!

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Sorry to hear the news Pete. BUT above all keep up the juicing etc, so you will be in optimum shape if an operation is in order.
Prayers and positive thinking and vibes are being send your way.
Hugs, Marjan

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Sending prayers and everything good your way.....

Jennie

toddi1973's picture
toddi1973
Posts: 39
Joined: Oct 2011

i am crossing all fingers that I have for you !
best of luck with the results and a big thank you for your inspirations in this forum!

best wishes from Florida ,

toddi

p.s. praying for you tonight

lauragb
Posts: 370
Joined: Aug 2011

Sending love, light and prayers your way. Hang in there.
Laura

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

Sending happy thoughts and prayers bud. Tom

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

so i am not out of the woods yet, got another cea 9th december and see onc on the 12th.

thankyou god, thankyou everyone for your kind thoughts and wishes and prayers.

as i mentioned i had been planning for the worst and hoping for the best. finally at last my wife agreed to sell a property in the city so i would not be so limited in choosing the cheapest supplements. i wanted the money to goto germany to do hyperthermia, to try whatever exotic treatment was the most promising.

i had been stage 4 in the head for 6 days, now i am back to stage 3.

maybe the cea is a fluke, maybe its the malaria i got 2 months ago. my doctors were worried.

now i have a clear pet under my belt and i am extra positive if that were possible.

maybe all the effort in all the alternatives has helped. well tell will tell. i just hope so.

you see i was very very worried, i have given this fight every once i have got. to raise the the prospect of the stage 4 battle was confronting.

that relentless little ******* crc cell, that despite my 1000s of juices and kilometers on the treadmill and all the vitamin d, all the disgusting tcm teas, all the weight i have lost, all the supplements and it still kept on coming. that freaked me right out.

the two new stage 4 supplements are 5gm of melatonin daily and 20ml iscador x 3 per week i inject into to my tummy.

I have the greatest respect for my stage 4 friends here and at rest. i thought of roger and kerry over the last few days as well as the ned crew. i dont think of symptoms with stage 4 i think of peoples stories and how priviliged i am, we are that we share them.

what a wonderful day, i am still smiling. for me a small miracle but a day in my life i will never forget. i dried my tears of joy as i was injecting my first iscador.

uncertainty is the hallmark of my life. i just hope we all see the beauty in each day around us.

just lots of hugs back at all of you.

i hope this news brings a smile for you, it did for me.

in our prayers tonight my kids thanked jesus, i did to. i owe him.

hugs,
Pete

very worried husband
Posts: 88
Joined: Feb 2011

Congrats Pete. I was holding my breath for the last few days. enjoy your clean Pet...... i pray that you are cancer free for ever.........you are an inspiration to many of us.....it would have been devastating to hear a bad news from you............

keep the good news coming....

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Congratulations Pete, I am so happy for your good results on the PET!

Gail

laurettas
Posts: 372
Joined: May 2011

for the good news! Have been waiting all weekend to hear from you. Thanks for posting so quickly!

buckeye2
Posts: 428
Joined: Jul 2011

Yes!!!! It's going to be a good week. Lisa

jasminsaba
Posts: 157
Joined: Jul 2011

that's fantastic news. Best wishes to you for continuing good health.

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

What great news.
I'm so so happy for you.
Karen

yoga
Posts: 87
Joined: Feb 2011

Pete,
I am so delighted for you!! You have worked so hard at this and I am certain that your exercising, diet, determination and get-to-it attitude has played a big part in how things are going for you.
Hope that you did a naked happy dance in the moonlight!!
yoga jo

Brenda Bricco
Posts: 579
Joined: Aug 2011

I am so happy and smiling the biggest thankful smile for you!
God bless you!
Brenda

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Pete i am so sorry to hear this. I go friday to see if my cea has risen again. so i will be praying for u as always. 2 resections and still no peace. So here we go again, the waiting begins.
hugs to you Pete, may we both just have glitches.
judy

ok been out of touch, so glad to hear of the new pet results. yeah team pete!!!

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

Sorry to hear, Prayers are sent your way.

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