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Pete did you get scan results??

smokeyjoe
Posts: 1428
Joined: Feb 2011

Just wondering I thought you had onc. appt to go over your scans.

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

so well my poor brain has been playing lots of tricks on me today.

I made a call to the hospital, confirmed yesterdays mri was reported around lunch time. i knew my surgeon did not have it, as they had not called. so i had it faxed to them. within an hour i got the best call from my surgeon/integrative onc.

CLEAR, and this is the most detailed test they can do.

the best news yet! clear again baby, i just cannot believe it, my onc had me cashing in my alternative chips, booked in the port, the liver surgeon, the exploratory liver ultrasound, and then either chemo till i drop or a resection. thats the standard onc line, of course its lets just play this test by test.

if anyones really interested read the gcmaf post for yesterdays scan. while trying to play it cool i made a few calls to extract the results out of the hospital system. they must have done a few hundred slices of my liver, they could not find anything with the primovist.

here is a big post about my thoughts on primovist and some tips and tricks getting your reports fast.
http://petertrayhurn.blogspot.com.au/2012/07/ken-sesel-senior-radiologist.html
if your into liver mets or trying to find them it seems its the way to go.

hugs,
pete

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

Pete, that is wonderful news/i am so happy for you. What a roller coaster ride. Enjoy!
Hugs,
Judy

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

life is a roller coaster alright. hopefully a nice long ride.

hugs,
pete

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

congrats on the clean scan---whew.
I'll toast you with some wheatgrass :)
Tommycat

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

i'm up late, off to sleep now. i will toast you in the morning.

have a read of this link if you got time.

http://petertrayhurn.blogspot.com.au/2012/07/my-zinc-difficiency-and-persistant.html

i really think my zinc and thrush issues might be the cause of my inflamation. the above article is pretty detailed but seemed reasonable.

hugs,
pete

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

Wow! Congrats Pete! You just made my day. :-)

Cyn

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

its nice help make you smile, its a beautiful planet, its nice to have friends all over it.
hugs,
pete

Lovekitties's picture
Lovekitties
Posts: 3366
Joined: Jan 2010

Wonderful news and so very happy for you.

Hugs,

Marie who loves kitties

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

i am happy , and am grateful, but in my heart the power these tests have over me is something i am trying to reduce.

oneday my run of good scan results may end, its ironic that i have had bad cea results.

trying to get my head around what is the best way of dealing with this uncertainty.

love and acceptance is the best way i guess. off to meditate and rest now, i have a chest infection and my weight training today was cancelled.

hugs,
pete

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

I love your good news and I love your attitude and willingness to share. Onward my friend!

Aloha,
Kathleen

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

8 months of rising cea and no mets, i might make into the cancer guiness book of records.
i am happy, not so much from the result, but from new perspective on life that test results don't matter.

given the number of tests i hope to have in the future, allowing my peace of mind to be determined by results well, its kind of putting my life on hostage to a few troublesome cells.

so i am in a great mood because life is great, i am eating a nice vegan dinner, the kids are watching a movie, the wife is working and all is well downunder. at least in this house.

now the big smile i have is due to the test result. checkout my blog about mri primovist if you are interested in the state of the art mri contrast scanning to find little mets.

hugs,
pete

danker
Posts: 1282
Joined: Apr 2012

Happy for you. may all go well

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

all is well down under, today is a beautiful day.thanks.
hugs,
pete

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Pete

thanks so much for sharing this great news.
I am sooooo happy to read this and so happy for your and your family.

i read a lot of your posts, yet i do not comment on everything like i should... but your great news right here continues to be inspiration to us all.

keep sharing and sharing.

My pray for continued good news to you and all who are fighting this stuff

my best

Joe

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

sharing well it helps me,

if its interesting read, and comment, some do and thanks.

early on i wanted to change the world into being alternative or complementary.

now i am just happy enough to change myself and try to stay on this wonderful ball of dirt.

we are such a resourceful species, i wonder how we get ourselves into the messes we do, the big mess we have the planet and our lives in.

but one mess at a time, i still have these confounding cea rises over the 9 months almost now and all clear scans for which i am so grateful for.

you know my cancer has helped me choose my words more carefully, its ok for you to fight this stuff, and i often sound that way.

but i so much prefer to say i am just "pursuing health" with a peaceful smile. ok a tad determined as well.

when i fight for me in conjures up the option of winning or loosing and its focused on a future outcome.

my meditation and reading and approach to life has lead me to the spot where i will make my juice, sip it. watch my kids watching tv enjoying life. i am savouring the moments constantly. with not to many expectations of the future, i am aware of living well now, at this moment. i am rambling but it something i wanted to share here anyway.

their is nothing really wrong with fighting, but its not for me. while even last night when studying hoore moans on the porn channel, thats a joke. hormones like cortisol i mean , well you just want to keep the hpa axis relaxed. meditation is crucial to staying relaxed and driving down cortisol, which drives down glucose from memory. even today in my gcmaf research i found amazing papers about aides patients getting huges benefits from meditation. it was a big trial. i floated that idea here on csn and it went over like a lead balloon. but the concept of fighting cancer, has aggression.

thanks for the prayers, i have faith god is listening, but i suspect our fate is in our hands, of course all miracles large and small gratefully accepted.

but for me each day is a miracle, so i am happy enough and certainly grateful to have friends here to ramble on with and share this bond with.

hugs,
pete

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

Great news....so happy for you Pete
Linda

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

each test is like roulette, where i keep all the winnings on the table.
i am glad you are happy, i am overjoyed.

hugs,
pete

janie1
Posts: 753
Joined: Apr 2011

Outstanding Pete! We can breathe now. Enjoy!!!!!

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

we can all breathe a relaxing and joyful breathe, not that i have a good scan result, but just that we are all here, sharing our lives and the crazy adventures that only fellow crc travellers could hope to understand.

like my battle with fecal incontinence. well i have added meat back to the diet for a week.
i had 3 great nights in a row, no accidents. what i changed last night was i skipped the enema. i have been doing probiotic and or wheatrass enemas, just before sleep. of course the theory for me was to clean me out to give me a good nights sleep.

our digestive systems are amazingly complex, to think the food we eat has no bearing on our health, on how we cope with this disease, well that attitude is from the dark ages of the early 21st century. just ignore me, going on about food again. who else can i talk to about waking up with nappies. even my six year old has grown out of his, and now here is dad with man nappies. i do look good in my nappy, they are designer.

it is outstanding the result and maybe life has something more for me to achieve beyond a chemo port and a box. i have faith in the healing power of nature, if you read the stuff on my blog about zinc and thrush, you will see that this result gives me another few months to push chelation hardcore. seeing onc monday 10.30, it will be interesting to see what she says.

if these tests came back positive, then i will reconfirm her strategy, i will also ask her to investigate the false positive nature of cea. of course i will ask her thoughts on the best thing i can do to stay alive with conventional and non conventional off the record stuff. i will start putting her on the spot.

has anyone here had this type of cea rise without mets showing up before ?

hugs,
pete

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Pete, appreciate hearing about Primovist, the liver enhancement contrast, for high resolution scanning of the liver. I wasn't clear about this MRI (or other image) for latest ears-to-knees coverage (or head to toes). Also was this a 1-1.5 tesla magnet or other field strength?

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

i will ask them, its really new, like something out of star trek.
but the nurses were old, alas.

old but sweet, just like me.

it took them 30 minutes to print all the films, at least i have a baseline of what my liver looks like clean, so if in the future i have any nasties to deal with well i have a baseline.

that was worth the $350, whats important is the expertese of the mri radiologist and their experience with primovist, this was forced into my thick head by my prefered ct scanning guru, who said he would not reviewed the mri primovist scans because they are really specialised.

what this means for me in the scheme of things, we shall see, whats your bet , is it a met ?

hugs,
pete

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

Pete my CEA is up in the 80s now, slow climbing in the past 6 months, but took a 40 point jump last check. I am now on Xeloda, ONC states the cancer is in there somewhere, its just taking it's time. My immune system may be fighting it, but the CEA is climbing fast, not good. So If my CEA comes down with the chemo, that will be our indication. If it doesn't then, I may go off of it. I get checked next wek.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

My wife's CEA quintupled even while on chemo before her 2nd surgery last year for the large cluster of residual lymph nodes.

Our plan to stop metastasis was to maximize the LEF etc ingredients and to use the low dose oral chemo EVERY day, THROUGH surgery. Depending on how you count, minus 24 - 48 hrs of chemo for surgery. After review of about 6-10 papers, mostly Japanese papers and abstracts in English, with perioperative chemo examples and series using UFT (oral chemo) or 5FU perioperatively (immediately before, during and/or after surgery), the do-ability and benefit of chemo-surgery was established. UFT appeared better to me than capecitabine for the cancerous epithelial cells that spread through the bloodstream, based on papers and metabolic process. However UFT (aka UFUR) is not available in North America - mostly Europe and Asia. Containing any problems to a single site, or at least no new mets, is a big win.

My wife's oncology surgeon seems to regard her success as a triumph of aggressive rationality over herd mindedness. I don't think the surgeon has had (m)any other chemo-surgery volunteers. We were confident because of the enhanced wound healing implicit in a good super-nutritional drill and previous experience.

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

if all my wako alternatives fail, i'll be looking over all those cool japanese studies UFUR sounds pretty sexy not like folfox. i done folfox and its planned to do it again.

but to be honest i want a refund for my folfox, this recurrance potentially sux!!!

yes a big dam refund!!!!

I would like to try another more gentler sexy chemo, if i have to UFUR could be it!

Its my body, i make the choices. Right now bath and sleep.

If its worth anything mate, love is the key to healing, i firmly believe that. its the one supplement we cannot buy. even from lef! ha ha ha

hugs,
Pete

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Just a note. The initial CEA run up with para aortic lymph nodes was caused by lowering the dosage even below the stage III doses because of synthetic folic acid toxicity (artificial folic acid sources now eliminated). Control of CEA values, CEA at an elevated flat line, even with a hardened enlarged PALN cluster, was regained before surgery by stage IV dosing of the immunochemo. UFT (5FU) was never stopped, in order to never leave a window open for new metastases to float in and form.

Once the worst, largest tumor masses were surgically removed, chemosensitivity could still be seen with the remaining CEA activity, likely some kind of residual mets. If only we can figure out which spots need to be removed, and get them done...

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

dear raquel,

our paths a similar with the rise and no met found.
i wish it was a nightmare we could wake from, but this is our lives.
you into grass ?
wheatgrass that is!

you know what you are doing, i pray its not a met, my onc want issue me chemo, i don't want it, trying newcastle virus disease and gcmaf. not giong to take chemo till i can see the box.

i have worked to dam hard my health to through it away, i prefer tans uft approach, or i might go for localised and whole body hypermia after a site has been found.

just be ultra cool, this is just the game of life. today was my best day yet.

pm me with your email if you want to chat about the similarities, checkout the primovist post.

hugs,
pete

ps we got lots of friends upstairs but i don't think they expect a visit anytime this century!

relaxoutdoors08
Posts: 520
Joined: May 2011

Pete,
Sending my best to you. Glad to hear the good news.
NB

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

receiving the best vibes.
thanks

hugs,
pete

steved
Posts: 835
Joined: Apr 2004

Good to hear the scan results, Pete. It is so hard living with this unertainty around this disease. Our tools are so blunt and primitive compared to the complexity of the illness and I think at times they do more harm than good. In some ways I wonder what the value of knowing a cea is rising is? For you it seems to help drive your determination and you use it in a positive way to explore avenues towards health which is great to see.

I too will toast you - but with a good New Zealand chardonnay- none of this wheat grass for me I'm afraid!

All the best,
steve

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

Pete, I agree. Taking the chemo to see if it does make it go down.

Trying just the relaxing mode and living today and looking forward to tomorrow. I feel really good, calm and content, and happy.

Watch second video

http://www.sunketempletrust.com/videos_DUL_CLEE_ARTICLE_2_Divine_Matrix1.htm

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

i pray it goes down, besides prayers a few juices and supps cannot hurt.

its a great day my friend. a lovelly motivational video.

hugs,
Pete

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

i will toast you as well.

why not use our challenges positively ?

whats the purpose of life , it not grow.

even my last day will be a great one, but i hope its a while away for me and all me friends.

alas, what the universe dishes us up individually is miracluous in a sense.

you kiwis, don't need WHEATgrass, you got heaps of other grass over there.

thats supposed to have healing benefits as well. only joking.

seriously thanks. i am grateful for my positive attitude, its really fueled by the joy of being alive. not a forced positiveness, its real to me.

its just a great day this morning, your kind reply and a clean nappy. really what else does one need. now i also had the wife on one side and my son on the other. he got a morning hug and back scratch.

real love is what drives our survival, i have faith in its healing power, not just all our amazing science proven and in developement.

hugs,
pete

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

I have been away and come back to your good news.
glad to here the scan was clear.
You must have more xray pictures of your self then family pictures by now. just joking
As long as you are smiling and happy, that is what is imported.

My motto is stil, One day at a time
and a day not laughed is a day not lived.

who cares about nappies, you are alive that is what counts.
Quality for me, not Quantaty.
My choice.
I often read all what you have written on and about your journey, it inspires me to go on
and never give up. Meditation makes me human, because I can be cranky.
I have a "gratefull" journal and read back and it works for me. A lot to be gratefull for.
You are right. REAL love is what drives our survival. You are nothing when you are not loved
Believe it, and love back with all your might
hugs, Marjan

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

strange is it that the most important aspect of healing is love and we talk most about supplements, diet and food and treatments. the sunrise yesterday was just stunning.

i used to be cranky as well, meditation works. glad someone reads a few of my adventures.

you know i am grateful for the nappies, i am alive as you say. its just another challenge on this journey we share called life.

I like to be balanced with my alternatives with the costs and benefits, and the issues i face.

the grateful journal is such a good idea, i am glad your doing it, all us would find something.

in the book on open awareness the secret of the grateful journal is just we are focused on what we are grateful for, and with so much strife in crc's lives being pleasantly distract and filled with joy and gratitude beats the hell out of being depressed and negative and cynical.

I am trying to be me, being a bit out there, being open to love and rejection. no point living safely now, might as well just do what you say "love back with all your might"

so well put! thanks.

hugs,
pete

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

strange is it that the most important aspect of healing is love and we talk most about supplements, diet and food and treatments. the sunrise yesterday was just stunning.

i used to be cranky as well, meditation works. glad someone reads a few of my adventures.

you know i am grateful for the nappies, i am alive as you say. its just another challenge on this journey we share called life.

I like to be balanced with my alternatives with the costs and benefits, and the issues i face.

the grateful journal is such a good idea, i am glad your doing it, all us would find something.

in the book on open awareness the secret of the grateful journal is just we are focused on what we are grateful for, and with so much strife in crc's lives being pleasantly distract and filled with joy and gratitude beats the hell out of being depressed and negative and cynical.

I am trying to be me, being a bit out there, being open to love and rejection. no point living safely now, might as well just do what you say "love back with all your might"

so well put! thanks.

hugs,
pete

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