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cea 66 today up from 7 in 4 weeks, i might have more than the common cold going on !!!!!

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

cea 66 today up from 7 in 4 weeks, i might have more than the common cold going on !!!!!

that was an attempt at humour! yes i know poor.

not the best news friends,

Well I have tried a pretty heavy supplement regime which was supposed to be effective against my tumours.

details on the blog.

the regime or the tumour or both have caused my liver to be messed up, early stages.

still don't know where the little tumour or tumours have landed, trying to do ct scan tomorrow.

been a bit teary, told wife that the game is back on for sure.

my tcm was changed from anti cancer to digestive.

so i am on a bit of a supplement break to detox liver and get digestive system in order.

now i think lots of the alternatives i have tried have some merits, they just don't seem to have worked for me at this point. and i suspect chemo/surgery is the way to go, will see onc asap.

its likely i will be back on chemo and hopefully surgery if the tumour is found and is operable.

the good news is we are away for a weeks holiday with family and friends tomorrow.

I am scared and confident, so i must be crazy.

Of course I am investigating some treatment options in germany, got some interesting emails to write.

Thanks for listening. I am a bit lost for words. I am enjoying a quiet time with the wife at home.

2012 the year of challenges. I am glad i am so strong and fit at least.

hugs,
Pete

PS I forgot the good news, well great to me at least.
Even though all the natural therapies have not stopped the cea.
But guess what has more than doubled in a month
my lymphocytes went from 0.4 to 0.9 which is a doubling. i have had no improvement
my rcc is down a little, and i know this is critical and i am trying to get onto haecrit.
basically my view is now getting my blood ready for chemo.
my religious devotion to tcm has helped in many ways i am certain but has not in my case stopped the march of the little crc devils. I have a formula for tcm that is to work with chemo everyday.

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

We are so sorry that your cea has gone up.
Hopefully it has gone up for some other reason
than a recurrence. If not than it is caught early.
Sending many hugs your way.
Linda

coloCan
Posts: 1956
Joined: Oct 2009

of something called HA-Irinotecan/HyACT which you might want to ask about, which i had read about at a site called market.......watch (ignore the .......-typed in full and 4 letters get **** here) Hopefully your CEA is rising because of what you've been doing lately......

janie1
Posts: 753
Joined: Apr 2011

Sorry for all of this worry, Pete. It is good, though, like you said, that you have been strengthening your body.

janie1
Posts: 753
Joined: Apr 2011
pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i will ask............
hugs,
pete

ps yes i am hoping the alternatives are helping

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

That sucks. This is the point where we went into fast forward, enough daily chemo to stop growth and spread, got scans, and networked to find willing surgeons for surgery no.2 because needed to get it while resectable by somebody.

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

i agree, just called saint vinnies, trying to speak to the oncall onc.
going into do scan today. the little sucker has goto go.

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

When/Did you start cimetidine?

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

i was having a break from it and supplements to get my liver healthy for surgery or chemo.
hugs,
pete

MaggieCat
Posts: 54
Joined: Dec 2011

Summertime in your neck of the woods. I so appreciate exploring the margins via your thoughtful posts.

lauragb
Posts: 370
Joined: Aug 2011

Pete,
I am so sorry to hear about your CEA. I know you have been working so hard to keep
the beast at bay. You are on it early. Please let us know when you have news.
I'm still keeping the thought that maybe something else raised it....

Sending light and prayers.
Laura

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and hoping the scan results are ok. It's great that you are strong and fit for whatever the year has to throw at you, but I'm sending lots of positive vibes your way that all will be well. Hugs-Ann

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

Pete
I’ve wanted to talk to you about this for a year now – though for various reasons, I tabled it until I could see an appropriate window to talk about it. Your post seems like the right time today to do so.

So, I’ve watched your quest and your approach with supplemental and alternative therapies. It has been interesting to see. One of the aspects of your journey that I’ve been evaluating was whether your strategy resulted in a recurrence, or whether you stayed clear for an indefinite period of time.

If confirmation does come back as a recurrence, I will be dismayed at the prospect at such news for you, but from a medical standpoint, would not be completely surprised to hear that bad news from you.

I’ve had cancer 3x, Pete…and 3x have I come back to ‘watch and wait’ state – utilizing a few different strategies, but fighting mostly a conventional battle.

This last year of my fighting, I watched as you tried everything there was to try. At times, I felt you held on ‘too tight’ and were like a Don Quixote – out chasing after windmills….

And still I watched…

I came to the realization after much reflection, that Pete was in the middle of his process...he had to sort through and flail away and do due diligence with the things he felt he needed to do. It takes time and does not happen overnight.

It's sort of reminescent of plucking a fish from the waters and watching it squirm around, fighting to get free.

Your story sort of reminds me of that analogy. I mean that in a good way.

To a large degree, your approach made me consider fighting my last round of cancer another way – a complete 180 approach to the way you were fighting your fight.

Now, it was not a Me vs Pete thing…it was more scientific to see if I tried another way to fight, would it yield the same results as that of someone, who was fighting with a supplemental and alternative strategy. Like you, I figured I would use myself as the experiement – with my life as the stakes of my decision.

I suppose it was for me to try another way that differed from the previous time I had cancer – I fought that recurrence with diet and exercise….I mixed in a few safe supplements that did not raise any eyebrows, took some vitamins and anti-oxidants and did good old-fashioned work, and ate as well as I could. Not strict, but just conscious.

I ended up with last year’s recurrence…so this time, watching you go gung-ho, I decided to give my body and the cancer cells “nothing good” to work from or draw strength from.

The theories around the board suggest that diet is the culprit, but anti-oxidants work for the cancer cell as well as the good ones…..so my theory suggested that if I not feed it the good things, then I will be depriving the cancer cells as well.

I had been walking good after lung surgery, but Folfiri knocked the tar out of me and I was too sick and weak to exercise. I did not always eat the right things…when on chemo, you usually eat what you can tolerate or swallow and keep down….so there was dairy and some powdered donuts – these helped quell some of the nausea for me…..but there was sugar introduced, though not to excess.

Long story short, with either approach I took, I reached a ‘watch and wait’ state – the credit goes to western medicine and its barbaric approaches to cancer fighting….poisoning yourself slowly in attempts to outlast the cancer.

It’s safe to say that the key to longevity to any approach is surgery – no case on the board has been successful without it…and while it’s no guarantee that it works, it gives us our best chance with an outcome we’re shooting for.

I’ve done the whole thing 3x now – surgery / radiation / chemo…..and have recurred every single time….they come quicker and quicker now as I’ve just crossed over the 7.5 year marker.

“What’s the point?”

The point is – there is no point, Pete.

There is no right way or wrong way – only a way – and a way that may change tomorrow from what it currently is today.

I wrote a whole book exploring the issues, Pete…if I could sum up the entire cancer experience in just one sentence or phrase, it would go something like this…

“There is no SINGLE answer to Cancer.”

And that’s exactly what I showed myself with my latest experiment – I reached the same state that you did – and the same state that I did before with myself with some base supplements and vitamins that I was trying then…

In the end, no matter what we try, I've reached the conclusion that there are many ways to attack the problem - and there are many paths in which to reach this Nirvana. The issue to me at this stage of my journey is not so much on "If We can Get There", because we can.

Rather, the real question we should be asking ourselves is "How Can I Stay There?", once we attain that precious threshold. And the even bigger question, "Is Anything That I Do - Really Going to Make a Difference in the Long Run?"

While I may have had my concerns with some aspects of your approach, I realize more than ever now, that is important to let each person do the things that they need to do – to ensure that they feel that they did everything that they felt they should be doing.

The victory lies somewhere in there…

Your story is important in that it shows us another example of the things that might or might not work…what’s really important is that you have pursued your endeavor. We all learn by watching others and their experiences…..good and bad.

That’s where the real gift of this board lies – in the folks who are willing to put it out there for all the world to see – and you’ve certainly done that.

As I sit here and think about you, I’m reminded that this is Pete’s Journey – this is the way that he sees it – at this place – and at this time. From that perspective, anything that you are doing can only be right – for you.

Thanks for sharing…you know, Pete…as I head towards my 8th year, I see things from a slightly different perspective than someone like yourself – we are at different stages of our journeys, yet we walk along the same path to some degree.

Where we have been different in protocol – we are united with the “Common Chords of Humanity” that reside in each one of us.

If your cancer is back, I know you will do okay…and agree some WM is going to have to be part of the protocol – you’ve got a lot of livin’ to do, after all.

BTW: I talked with a smart nurse the other day and she shared something with me that you might find interesting….she said people who are overweight (not morbidly obese) – just pleasantly plump, like myself – actually fare better with chemo than someone who is skinny.

The reason is that there are more reserves in the body to draw from, in the event that a person develops a problem with nutritional intake…

But, you are right in the fact that you are fit and tone – and if you have to do battle again, this will carry you up the hill aways…I’ll get there too, I’ll just be a little slower, LOL!

Take care, Pete…I’m sorry if the news is bad…but as a man with several recurrernces under his belt and still not in the grave as a Stage IV…….well, if I can do it, so can you.

Chin up – off you go, Mate!

-Craig

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

It is too bad that Pete was unable to get more scientific medical support from literal day 1, perhaps like the rgcc blood test and others, perhaps have a few radiation enhancing supplements, have a hard answer for cimetidine by surgery time, get his resected tumor(s) directly tested against biological and chemotherapies, have better blood monitoring post chemo, and perhaps have a more sensitive test to decide on maintenance (immuno)chemo after the inital chemo blast. Vs an empirical, debilitating 6 mo chemo and just "wait 'n see" 3-9 months on UFO sized recurs. Instead he's left to acramble over massive technical ground that our industrial medical complex has largely managed to sabota-, er, f-o- for the last 25-70 years, even yet.

Hopefully surgery II straightens this out pronto.

MaggieCat
Posts: 54
Joined: Dec 2011

only through enlightened discussions can we know what new methods are available to us in this fight. Resected tumor testing has to be bought into by the surgeon... if not, the vast info that might be found is lost.... Tanstaafl, Pete, ... the challenge is for us... and for that next one "new to the board"... How can the latest science be stated in layman's terms? What needs to be said to the surgeon to get his attention and buy in?.... Maggie

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

First, is the surgeon's personality, experience, inclinations and technical background. In my limited experience it's harder to move a "conservative" doctor, or an A$CO member. Second, was being up to speed enough to have papers, personal data at finger tips, and simple clear requests (laboratory instructions). Third, for us, "practice" conversations on previous non-viable surgeons, made our presentation gold for the finale.

Next step is "training" enough doctors so that some will offer it upfront, rather than patients searching, pushing or begging. It may be a matter of causing competition.

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

Just wanted to let you know you are being thought of. Can't blame you for being scared. You have gone the route you thought right for you. Glad you are getting all your tests in quickly so you can be on the right path towards health.

Kim

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

to adventures and normally you manage them towards a happy end, so I'm sure another happy end is coming Pete!
Hugs from the other side !

MrsJP
Posts: 157
Joined: Jan 2011

Hi Pete-I wish I had some insight, knowledge or something of comfort to say. All I can come up with is: I'm thinking of you and your family. You mean alot to me..and THANK YOU! for sharing your journey...

You are a strong, kind and caring person....what ever the future holds you will be a the top of your game...

God Bless

jp

Brenda Bricco
Posts: 579
Joined: Aug 2011

Thinking of you Pete and just wanted to say "GO GET EM"! If there is something trying to rear it ugly head it sounds like you are there ready to take it off.
God bless you.
Brenda

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

Just wanted to let you know that you're in my thoughts and prayers.

All my best,

Cynthia

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

I'm so sorry pete I wish you all the best my friend .

RobinKaye
Posts: 93
Joined: Nov 2011

Pete,

My husband had chemoradiation for rc, with positive regional lymph nodes as well as malignant lymph nodes in the immediate area. One of the lymph nodes along the iliac artery tripled in size after completion of cr. He said to the surgeon that the chemoradiation didn't work to which the surgeon replied, "you don't know that, the node could be the size of a baseball if you hadn't had the treatments".

You don't know if your alternatives failed or helped you. You have no idea what the CEA numbers would be had you not been doing all that you've been doing. I don't know, no one does. One thing is almost certain, you didn't cause this to happen and you are no doubt much healthier for what you will be facing if it turns out the CEA numbers are an indication that the cancer is rearing its ugly head again.

Best to you...

Robin

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

oh Pete, i am so sorry to hear this. Seems the new year is not starting so good for some of us. it just never ends.
i am praying for you,
hugs, Judy

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I hope everything will be just fine. It's nuts how one day it seems good then boom all hell breaks loose!! I'll be praying for you.
Jeff

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

Hi Pete, man, this really sucks! You've tried to do so much to keep the cancer away, it just isn't fair! Then again, cancer never plays fair. I'll be praying for you and awaiting your scan results.

Hugs to you,
Lisa

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

So sorry to hear that even with all your valiant efforts, your CEA continues to rise. Hopefully, this scan will show you the cause. Please enjoy your holidays with friends and family. Will be thinking of you.

Luv,

Wolfen

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Ouch, that one had to hurt. Enjoy your vacation, cancer can wait a week. Whatever route you take to treat your possible recurrence, I know you will think it out thoroughly and make your decisions on what is right for you.

Take care - Tina

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

So sorry to hear about your CEA rising. I'm still praying that it is something else other than a recurrence. Glad to hear about your lymphocytes doubling. Keep up the good work and stay healthy.
Karen

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

Sorry about that CEA Pete...I hope your vacation is great for you and your family!

plh4gail

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

Strong and Fit are two key words.....you've worked hard to get healthy and strong.
Those may be your best allies in the days ahead.
I do so hope that the scans come back clear.
Hugs across the Big Pond!

son of hal
Posts: 117
Joined: Mar 2011

Hey Pete- Sorry to hear this news I know how hard you've been trying to keep this thing down. I haven't been on here much lately but I keep up with some of the posts with yours being one. I don't recall if you are on Tagamet or not. I know when I had my recurrence I started on it and while my case was not as advanced as yours I did have my CEA drop by half just prior to surgery. I also have an immune system deficiency similar to yours that no one has figured out in two years. I'm low in all my counts and had active lymph nodes in PET scans that they thought was Lymphoma. Fortunatly the lymph node issue corrected itself after chemoradiation but my blood counts are still all bad. Anyway, if you're not, look into the Tagamet and give it a try. I've seen enough promising info on it for me.
Take care, keep the faith.
CJ

buckeye2
Posts: 428
Joined: Jul 2011

Just wanted to chime in with prayers for easy answers for you and echo Craigs thought that your fight and willingness to share is appreciated and admired. Lisa

mom_2_3
Posts: 964
Joined: Nov 2008

Pete,

Thinking of you Pete.....

Amy

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

Hey, Pete.

Praying that you will find the right answer to kick this thing HARD. We need your cheerful presence around here.

*hugs*
Gail

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

its 2.16am here in our little holiday unit in forster.
the fridge is covered in supplements.
it also has my 3g wifi wireless router, so i can talk to you guys anywhere and do research!
inside the fridge its full of veg/fruit and salmon and the drugs that have to be cold.
the tap has my portable top quality water purifier.
i got my champion juicer on one side of the sink, the chinese herb cooker on the other.
i have 2 boxes of medical files, to organise.

i am going to o/d on vit c and artemisinin see my blog for the methods of action.
it may still work, experimenting on myself before the onc gets my body.

today i have done the functional liver test, goto finish it now by taking some aspirin specific dose and then peeing into a bottle for 10 hours. the other part of the test is a caffiene based saliva test. pretty interested in the results.

my full bloods show no damage.
my live bloods show significant liver impairment.
the functional test will show something in between.

also doing a comprehensive stool test, looking for parasites.
i suspect my helicobacter is back, but will check tomorrow.

i am a busy busy boy, the 4 days of iv c at 60000ui each day is getting up their i think.
giving the alt a good run for its money. its not cheap, but if it saves on the cost of a coffin, it will be worth it.

my spendthirft ways of supplements and treatments are well if i fail the life insurance is big, if i win i will do some work and sooner or later to pay for all the credit card bills.
interest on interest is a good thing i think!!!!!!!!!

how do i answer everyones kind comments, i will find a way.

i loved everyones comments short like gails to long like especially craigs work of art.

my path reflects my obsessive personality, its out here, nowhere else really.

i have more empathy than i did before.

i just got results on a blood test, its just 3 letters cea. the amount of fear and power i give it bugs me. uncertainty the essence of life, or mine at least. i say bring it on.

every moment of research and reading from biology , to pubmed to yoga, to meditation , to diet. i have actually enjoyed and done enthusiastically.

crc just stimulated my interest my obsession about health and balance.
its late i have had my pills for the functional liver test, now i have to pee into a bottle for 10 hours.

i want to respond properly to everyones kind comments, just give me time.

hugs,
pete

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

A lot of vegetables helps increase potassium intake. However, frequent, high dose IV vitamin C may still deplete potassium levels in the body.

With all her IV C as sodium ascorbate, somewhat more grams/kg and frequent (3-4-5x, even 7x per wk), my wife's potassium levels eventually drifted down even with some vegetables. She needed to supplement prescription sized potassium tablets (over 100 mg potassium/pill, 2.5 milliequivalents, in the US is prescription. typical prescription tabs are 10 milliequivalents). Her potassium blood levels get checked periodically. Citrate was convenient, any prescription form is expensive.

Since she is winding down now, IVC "only" twice a week, potassium supplementation is borderline necessary for her. Else we would have moved to kitchen chemistry with bulk USP potassium (bi)carbonate and ascorbic acid in the supplements "milk shake", doctor okayed, for her.
-------------------------------
Sorry about all the liver issues, Pete. What level of milk thistle extract, NAC, lipoic, TMG, selenium might you be taking/starting? The naturopath may have some herbs like dandelion, burdock, Picrorhiza kurroa, or black radish in there too. Sometimes we catch sales on combo formulas that are inexpensive.

here4lfe
Posts: 306
Joined: Jan 2010

Keep fighting and smiling. Cancer never sleeps, and never should you.

Best

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

Dont give up Pete. But give your body that needed rest. You (if anyone) will gain the upper edge on this setback. Praying for you my friend. Stage 4 can still be beat.

k1
Posts: 220
Joined: Dec 2009

Pete, so sorry to hear about your situation. You are such an inspiration to others and I am sure you will continue to be throughout this current battle. Don't forget to take time and enjoy your holiday. If you are in for surgery soon, it may be awhile before you can take another one so be sure to enjoy this one.

K1

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Pete, I've been off the board for a long time. No special reason. Just wanted to say my thoughts and prayers are with you. Best wishes and big hug.... Joyce

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