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

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited January 2012 in Colorectal Cancer #1
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.
«13

Comments

  • toyfox
    toyfox Member Posts: 158 Member
    So sorry cea has gone up
    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
    coloCan Member Posts: 1,944 Member
    There's a phase III trial in Australia by a firm named Alchemia
    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......
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    ouch
    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
    pete43lost_at_sea Member Posts: 3,900 Member
    tanstaafl said:

    ouch
    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.

    i said something and it started with F
    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
    tanstaafl Member Posts: 1,313 Member

    i said something and it started with F
    i agree, just called saint vinnies, trying to speak to the oncall onc.
    going into do scan today. the little sucker has goto go.

    CIM city
    When/Did you start cimetidine?
  • janie1
    janie1 Member Posts: 753 Member
    coloCan said:

    There's a phase III trial in Australia by a firm named Alchemia
    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......


  • lauragb
    lauragb Member Posts: 370 Member
    Pete,
    I am so sorry to hear

    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
  • janie1
    janie1 Member Posts: 753 Member
    coloCan said:

    There's a phase III trial in Australia by a firm named Alchemia
    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......

    Sorry for all of this worry,
    Sorry for all of this worry, Pete. It is good, though, like you said, that you have been strengthening your body.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    coloCan said:

    There's a phase III trial in Australia by a firm named Alchemia
    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......

    always good info steve
    i will ask............
    hugs,
    pete

    ps yes i am hoping the alternatives are helping
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    tanstaafl said:

    CIM city
    When/Did you start cimetidine?

    back on to it 4 weeks ago
    i was having a break from it and supplements to get my liver healthy for surgery or chemo.
    hugs,
    pete
  • MaggieCat
    MaggieCat Member Posts: 54

    i said something and it started with F
    i agree, just called saint vinnies, trying to speak to the oncall onc.
    going into do scan today. the little sucker has goto go.

    Enjoy Your Holiday
    Summertime in your neck of the woods. I so appreciate exploring the margins via your thoughtful posts.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Thinking of you, Pete-
    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
    Sundanceh Member Posts: 4,392 Member
    Wanted to Talk to You Tonight.....
    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
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    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
    pepebcn Member Posts: 6,331 Member

    Sorry
    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

    Pete wishing you the best in this new adventure , you are used
    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 !
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    Sundanceh said:

    Wanted to Talk to You Tonight.....
    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

    about the DQ dude...
    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.
  • MrsJP
    MrsJP Member Posts: 157
    comfort
    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
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Just wanted to let you know

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

    All my best,

    Cynthia
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    MrsJP said:

    comfort
    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

    Thinking of you Pete and
    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
  • tina dasilva
    tina dasilva Member Posts: 641
    sorry
    I'm so sorry pete I wish you all the best my friend .