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seeing onc tomorrow and surgeon next day

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

Its probably an important visit to say the least.

yes its the second cea rise in a few weeks, so i will see whats said.

so my my cea rose to 7.4 from 6 18 days earlier.
still clear pet and ct a few weeks ago.

doing lots of interesting research as always on samE, melatonnin and immunotherapy.
when i take specific treatments i will let you know. i am doing some basic tests like liver function, parasites and a heavy duty blood test.

had a lovelly weekend with wife and kids and friends.

not sure what questions to ask onc, maybe i want to leave somethings unsaid.
i am interested at the time frame with regard to disease progression and chemo effectiveness and what clinical trials are on the table with regard immunotherapy.

menawhile my iv vitamin c will have to do. another hit tomorrow.

hugs,
pete

ps and i still walking and doing yoga and having a healthy diet.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Are these regular follow up appointments??

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

i had a quarterly about 3 weeks ago, then they spotted the cea rise from 0 to 5.9
now all the appointments are a blur.
hugs,
pete

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

Pete, have you found the missing cimetidine? What is the situation for second surgeries there? Might also have a look at Ben Williams' site.

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

got a call from lef oncologist the other day. he referred me to 20mg per night melatonin.
he also was cautious about cimetidine upsetting stomach acids, something my other naturopath had said that caused me to back off on it.

my surgeon will chop anything chopable, but nothing at present to chop thank god.
now thats a good problem to have. i will keep on investigating.

the integretive doctor today pushed getting the whole vit e with 8 sub types complete. basically i will use the lef vit e and my doctor vera's. its apparently discussed on cancer defeated but i could ot find it yet.

hugs,
pete

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

Will be thinking of you. Please post what the onc says tomorrow.

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

you have such a nice smile, thanks for caring.
hugs,
pete

laurettas
Posts: 372
Joined: May 2011

Thanks for keeping us informed, Pete. I am still hoping that the malaria is the cause for your CEA rise but please let us know what the doc has to say. Will be hoping for the best.

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

here is hoping its good news. what i want is the strength to cope with whatever this life dishes up with courage and style. i know i pushed the diet thing hard here, and i have added some protein back as my onc insisted i did not loose any more weight.

my onc's crystal ball is a bit foggy. she is not guessing, is basically said what blake said but in a feminine blonde warm way.

she is across all the colorectal clinical trials in australia and nothing is suitable for me.

i psuhed the immunotherapy topic without real success.

heres to the best christmas we can all have, i will try and put this out of my mind while taking lots of positive steps.

hugs,
pete

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

Pete, big hug to you. I will be thinking about you, and walk in your name when you can't. Just so ya know :)I hope your appointment goes well!

plh4gail

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

we have been mates here for so long, thanks for the walking support.

its obvious an once of prevention is worth a pound of cure.

maybe walking may or may not have helped me, but the studies are so positive.

getting back onto the crc merry go round ain't much fun, except for the wonderful people on this board to keep me company.

i think my appointment went as well as possible, my onc has tried to give me 6 more weeks of peace of christmas. which i will gratefully accept.

hugs,
pete

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

Pete, I don't walk the 30 min a day or whatever it is I have read. But I park far from the hospital in the parking garage on the top level, 4th floor and take the steps daily 5 days a week. Then once in the hospital I work on the 3rd floor and my department is on the 4th. So for meetings, lunch, coming, and going, even the random times I have to do anything, I am up and down 4 flights 5 to 10 times a day easily. I hope it is helping my cells bust up some potential cancer and/or starve off anything brewing.

plh4gail

lauragb
Posts: 370
Joined: Aug 2011

Hey Pete,
I'm thinking of you hoping for the best. Maybe that number doesn't mean
anything significant.
Sending you light.
Laura

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

now is see the light. a little more light makes our world a better place.
hugs,
pete

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

sending good vibes your way...please let us all know how it goes!

Ellen C.

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

it appreciate the vibes
hugs,
pete

Annabelle41415's picture
Annabelle41415
Posts: 6186
Joined: Feb 2009

Wishing that all goes well with both appointments. Maybe your doctor can give you some insight as to why the rise. Was that a good indicator for you before? It can fluctuate for many different reasons. Let us know.

Kim

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

what can i say. many different reasons for the cea.
just praying its ibs.
i did not realise how vulnerable us stage3 were,
graduating to stage 4 is simple,, get a cea rise, do a scan. bang your stage4.
now its not quiet that simple, in my sitution.

time will tell, i am going to give my body all the help i can with this.

hugs,
pete

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

the drum roll from the big onc appointment was nothing.
my onc said the small rise in cea from 5.9 to 7.4 on its own is not enough to start chemo and said i could get a second opinion. i will take her up on this, but it maybe a second opinion from a clinic in germany. will keep you posted.
so i see my onc on 23jan2012 and will do bloods again then.
was expecting the big sad stage 4 talk, thats been deferred. so no new chemo port and chemo.
its coming up to christmas so this is really positive.

i am blessed to have had a recent clear pet and ct, so these bloods cea still very worrying and soemthing to be tackled, but i am trying to keep them in perspective.

mind you the idea the tumours is growing as we speak and my wonderful alternative liefstyle and diet has not stopped it is frustrating but thats my lot.

i also saw the integrative doctor at 9am and had 45gr vit c iv. it went well, he was far more pessimistic. he mentioned the interview below and cancer defeated newsletter.
both interesting reads.

http://www.prescription2000.com/Interview-Transcripts/2011-07-12-jeanne-drisko-iv-vitamin-c-update-transcript.html

the blessing out of all this is i can continue to focus on my alternative lifestyle and a few well choosen supplememnts. i am seeing another intregative specialist this week and my surgeon tomorrow.

its crazy to think they have an indication my tumour is growing, taking root so to speak and conventional medicine cannot even locate it, at least the wholeist approach has an advantage here, as the conventional guys don't even have a target yet.

i hope we all have a healthy and happy xmas,
hugs and parayers for us all,
Pete

PS I am doing starting a transendental meditiation course with wife tonight. When i get it mastered i will fly over mentally and wish all my friends in the usa. never in 10000 million years did i think i would do a tdm course.

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

It is probably a good thing your onc is being conservative. A rising CEA can be a number of things, and not all of them are cancer related. It is even possible that your recent malaria infection is causing this rise. You certainly don't want to go through another round of chemo if you don't need to, as John would say that is not good for your health.

Another reason for waiting for an actual tumor to show itself is that it provides a baseline where you can measure the effectiveness of a particular treatment.

Here are some of the finer points of CEA:

CEA Explanation

What conditions can cause an elevated CEA?

Both benign and malignant (harmless and cancerous) conditions can increase the CEA level. The most frequent cancer which causes an increased CEA is cancer of the colon and rectum. Others include cancers of the pancreas, stomach, breast, lung, and certain types of thyroid and ovarian cancer. Benign conditions which can elevate CEA include smoking, infections, inflammatory bowel disease, pancreatitis, cirrhosis of the liver, and some benign tumors in the same organs in which an elevated CEA indicates cancer. Chemotherapy and radiation therapy can cause a temporary rise in CEA due to the death of tumor cells and release of CEA into the blood stream. Benign disease does not usually cause an increase above 10 ng/ml.

What are the limitations of CEA testing?

CEA is not an effective screening test for hidden (occult) cancer since early tumors do not cause significant blood elevations. Also, many tumors never cause an abnormal blood level, even in advanced disease. Because there is variability between results obtained between laboratories, the same laboratory should do repeat testing when monitoring a patient with cancer.

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

time will tell. i really like all the other causes of cea rising, i would even be happy to have a couple. i have been a bit explosive of late in the bm department, so i pray this is just ibs.

so i still plan for the worst and hope for the best. why take a day for granted anyway. i appreciate my onc, she tries to keep me on a tight leash. she is a calming influence.

she also mentioned the baseline, you discussed. she also wanted me to gain weight. we agreed that muscle is ok, so my weight training has a bit more more focus.

i hope you are going well.

hugs,
pete

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I sent it on to my internal medicine/anthroposophical docs who oversee my IV C infusions and they follow KU protocols. One of them has studied at the Lukas Klinik in Switzerland and studies oncology and integrative medicine in Germany every year.

I've been doing IV C infusions 75 gm 2x/week since October 2010, along with IV Iscador (mistletoe) once a week. I'll be a year in remission come the end of Jan 2012 (when I had the stereotactic radiation for the 4 lung mets). My next CT abdomen and lung is Jan. 5, 2012.

Good luck to you on 23 Jan 2012 - it's my 60th birthday and I'm delighted to be within spitting distance of it!

Leslie

PS Additionally I incorporate a similar diet, juicing and exercise plus weight lifting into my life. I've been a zen student now coming on 21 years...

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

i am doing iv c and subcutaneous iscador. what a small world.

hugs,
pete

ps glad i am not the only one and that you are ned. it gives hope that is self fulfilling.

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

Has a growth been found in any of your scans yet?

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

hi sonia,
i hope you going ok. its been a while.
merry xmas,
hugs,
pete

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

:-) hugs, just thinking have you started any new natural treatment that could cause it? it's good they can't see any tumors. hugs just hate you and everyone else having to go through this and worry.

janie1
Posts: 753
Joined: Apr 2011

When you started weight lifting, i think you said you were doing it daily. When your cea went to 6, i thought the lifting could be causing the rise. If you are/were doing heavy lifting, and heavy lifting causes microscopic tears in the muscle (hence, inflammation). The muscles need a day inbetween to rest and repair. Just am curious to see if you are still doing that much physiscal exertion. Were you told the routine is cardio every other day, weight training the other days? I'm very positive on all that you are doing.

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

my regime is constantly evolving, been pushing diet and anticancer foods more recently.
been backing away from some supplements i can get naturally.

i have recently had malaria, a blockage, ibs, started weight training. i have endlessly and uselessly considered causes. nothing stands out, its likely the most obvious reason for the rise is crc, of course hoping its not but planning it is.

hugs,
pete

northernlites
Posts: 96
Joined: Jun 2011

Hi Pete,
Sorry you are having a long hiccup in your progression! Did you ever get a genetic test done? I have recently had a rise in my cea as well. my oncologist doesn't seem to concerned about it , but I am scared....it has only been 6 months since my surgery, and I had all of my colon removed. I tested positive for lynch syndrome. My dr tells me I am prone for other cancers.

keep up with what you are doing. I believe that you are going to be fine....

Hugs,

Tessa

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

dear tessa,

onc ordered genetic test yesterday.
i believe i am going to be fine, actually i am fine now, feel just great.

who needs a long life anyway, i look good now and my hair left me decades ago.

i have always favoured quality over quantity. until recenty i applied both quality and quantity to my diet, alas i ate to much and exercised to little and was a possibly an obese, lazy stressball who ate red meat that was often bbq'd. so maybe is stepped in front of the crc bus.

i certainly am having fun with this latest challenge and have really grown emotionally and spiritually over the last few weeks. i look into the mirror, into my eyes, into my soul.

what life dishes up i accept gracefully, thats the nature of our existance. of course i am not checking out early, but just saying its good to make peace with my mortality so i can have a bit of fun in this fight for my survival. just glad i like challenges.

your cea rise, maybe normal for you. my onc was worried as i have been all zero until 3 weeks ago. i also hope your rise is nothing serious.

hugs,
pete

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

Hi Pete,

Darn- sorry you're having to go through all this bother and worry. Interesting what someone wrote about the weight lifting and tiny tears in the muscle causing inflammation which maybe could affect the CEA. Maybe test it by stop the weight lifting and retest the CEA. Worth a shot anyhow.

I'd still keep up the alternatives if I were you.

Hang in there- I follow all your posts even if I don't always reply. I'm rooting for you- go, Pete!

Hugs,
Lisa

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

Hi Pete,
I have been on cimitidine on and off and they always caused me trouble in the BM department. Explosive and frequent.
Any inflammation can make a rise in the CEA. Hopefully it is nothing to worry about. And by the way, worry is stress and stress can cause cancer.
Nothing showed up on the scans. So continue what you are doing, have a positive outlook and live everyday to the fullest. Smile and try to be happy, it is very good for the body.
Meditation helps. I do it everyday and clean my body of anything that should not be there, by visualising.
Trust your self, you are the only one who knows your body best.
May Gods healing light pass over you is my prayer.
hugs, Marjan

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

cimitidne and issues ? well i am not taking it, the lef onc i chatted to was not a big fan
given how it changes stomach acid ph and absorption. i have asked alot of alt doctors and none have backed it up for crc, even if my local doctor did give me the script.

2/3 of our immune system comes from our gut. i want my immune system firing. i to prize my meditation time, i got in over 3 hours yesterday and today. i am almost a dam monk except i still like sex. but who has time for that when you meditate all day. i hope you can see the humour there. my humble attempt.

thankyou for your prayer, his will will be done. if i can help it along well i will try.

and yes the irony of the cea rise causing stress that actually caused a reoccurence has dawned on me. that woul;d be fun NOT! i am about as peaceful as i have ever been in a quietly focused way.

hugs,
pete

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

i loved your suggestion, but if we assume its just the weights, then i will have my onc and surgeon watchfully waiting while i become a muscle bound stud. you see a cea thats not crc i can manage. but say its not the weights causing the rise, onc and surgeon don't think so.

say its crc, well the weights i do, is adding a pound a week to my body mass. so as and if i go into chemo, i will have some muscle mass to spare.

i love your little dog and you also. be well wonderful girl and keep smiling that lovelly smile.......

hugs,
pete

ps my crc adventures are at petertrayhurn.blogspot.com
some seriously questionable alternatives there, i am doing and more on the way.
just call me the crc alternative human trial. i am still typing after iv vit c and
iscador and many many others. god bless us!!!!!!!!!!!!!!!!!!!!!

lauragb
Posts: 370
Joined: Aug 2011

Following your story. I am sending thoughts, prayers, light you name it that your outcome is good. When I was first diagnosed, the only thing that seemed to calm me down was going outside and standing in rays of sunshine, the light is still a healer for me so I like to send that feeling and image to others.
Keep on. Still hanging on to the idea of good news for you.
Laura

yoga
Posts: 87
Joined: Feb 2011

Hi Pete,

Sorry to hear of your latest trials . . . . . ain't life fun? You are working so incredibly hard to beat this thing from every angle - I think mostly for the love of your family. (That is a beautiful thing.) Keep working on your alternatives and exercise so that your body will be strong enough to endure any new "tortures" that modern medicine can come up with. It is my belief that modern medicine will do what it can but that I also need to be part of my own treatment - I need to keep myself strong and support my immune system so that together science and my own body can fight together.

Healing and positive thoughts coming your way from Canada . . . .
yoga jo

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

Hi Pete,
I'm still holding out hope for you. Praying that it's nothing. Wishing you peace while you go through this wait and see period.
Karen

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

Now I know what you're doing. You're just trying to put Paul Hogan to shame.LOL I think you'll look great as a muscle bound stud. Seriously, just keep being you and we'll hope this is just a nasty glitch in the system, not in you.

Luv,

Wolfen

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

been a bit of a wreck today, yes crying while driving the kids home from school.
we say our prayers most car trips.

the reason i am sad is my mortality is right in front of me. our lives are so fragile. i know how difficult a few persistant cells can be and where it can end.

i appreciate the support here and have been meditating to keep my head from exploding. when i do my yoga breathing on the in breathe i think of courage and on the out breathe its fear. that helps me.

i spoke at length with my ace in the whole blood bank researcher phd, who explained cea, who explained lymphocyte quantity and quality and suggested leveraging research going on in the aides world to boost my immune system. when i have completed following up these leads i will put it together on my blog.

started on a sulphorane supplement, that seems promising. got the kids small presents at the shops today and icecreams ( not for me )

next tuesday i see a doctor who is looking at harvesting white blood cells from bone marrow. it should be an interesting meeting to say the least and tomorrow i meet the tcm oncologist to discuss to latest in tcm research.

no stone unturned i say. if i have missed a stone, let me know.

our forum here is filled with mostly love and concern from people sharing the most precious moments of our lives together. sometimes i guess that gets lost in our passion about our beliefs. i would say good manners first, passion second. at least thats what i try to do.

hugs,
pete

janie1
Posts: 753
Joined: Apr 2011

Wow Pete, you
Aren't leaving any stones unturned. Good for you. I love it. I think it will all work out fine. It is a fulltime job, but worth every bit.

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

dear janie,

but seems like a reasonable use of my time, its a lovelly world despite its imperfections. just like or forum.

hugs,
pete

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

I'm so sorry that you are so worried over CEA rise. I understand your feelings
completely. My husbands CEA was 1.5 then went to 3.4 three months after Chemo.
He will not have another CEA test until March....will have a cat scan at the same
time. The waiting is so hard. We are into everything possible to keep the beast
away. We are into raw veggies, juicing and exercise. My husband also loves the sauna.
You are in our thoughts and prayers. Let us know how the next test turns out.
Take care Linda

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

dear linda,

my very best wishes for you and your husband for xmass and well for ever. and thats along time.

your cea rise story was good to read.

i also combine meditation in the sauna, it works a treat, killing two birds with one stone.

we are doing the same things, exercise, juicing and raw veggies.

other peoples prayers are so uplifting. i wonder where new new found hope has come from, it could have been your prayers.

come what may, i find being positive and smiling is the best way to be. i am back to my old self, and this will be the best xmas with my family yet.

one day soon i will document everything i am doing, then we can compare everythings just for fun!!!!!!!!!

hugs,
pete

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