"Is it Kind? Is it True? Is it Necessary?"

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Comments

  • PhillieG
    PhillieG Member Posts: 4,866

    but phil, i feel i know the answer

    help me mate, am i loosing my mind?

    today the doc suggested 1 in 2, for say 50,000 and 4 weeks, then most of us will know!

    in principle removab post resection has potential. i am using it to stay ned by targetting the circulating tumour stem cells.

    sorry for any inadvertent statements, but most chemo damagesthe immune system, correct me if i am wrong, especially what us coloectals  use, 5fu, xeloda, folfox, folfiri. they all damage or disable the immune system.

    hugs,

    pete

    Hi Pete

    I'm not qualified to answer whether you're losing your mind or not Tongue Out

    Some chemo certainly does do damage to the immune system and some chemo can do a lot of harm. I don't dispute that at all. But when it's said ALL chemo WILL cause cancer, that's simply not true. Some newer targeted chemo can help and does little harm.

    It's like the other "claim" that nothing new has been discovered as far as treatment goes in over 30 years. Again, not true. It's like saying that everything already exists so nothing can ever be new. Even when something that may have been discovered years ago is repurposed for something else, a new treatment is created. Also, there are the newer class of targeted therapies that aren't carcinogenic. When some people keep repeating it over and over with the intention of scaring people it gets old... Most of us who have been here a while know it's nonsense so it's filed under BS but some new people can be frightened just for the sake of who-knows-why.

    Pete, you may know the answer and maybe it can help more people. Maybe it's a customized approach that will help only you. Who knows? If everyone who followed your lead had the exact same result (or better) I'd agree with you. I can say that my approach has given me 9 years with a quite good quality of life, no bag, great successful surgery, no complications, never had chemo withheld due to low blood counts so therefore while I haven't been cured, I'm living with cancer and doing great! But I know people who went where I went, did what I did, saw who I saw, and they're dead. Others are NED.

    There hasn't been a magical cure found (yet). So all I ask is for people to be careful before making absolute comments that use "always, never, will, all" and other words that leave no room for exceptions...

    And again, I'm VERY happy you've been doing treatments that have helped you. Will they always work for everyone? I have to say I have my doubts...

    It reminds me of the religion discussions. Some people found their way and that's FANTASTIC. Now I doubt that a Christian will convince a Muslim that they're following the wrong path to eternal salvation and visa-versa. And, is there even eternal salvation?

    Some like to play Monday Morning Quarterback. That's nice but anyone can tell a person what they SHOULD have done after the fact...

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    PhillieG said:

    Hi Pete

    I'm not qualified to answer whether you're losing your mind or not Tongue Out

    Some chemo certainly does do damage to the immune system and some chemo can do a lot of harm. I don't dispute that at all. But when it's said ALL chemo WILL cause cancer, that's simply not true. Some newer targeted chemo can help and does little harm.

    It's like the other "claim" that nothing new has been discovered as far as treatment goes in over 30 years. Again, not true. It's like saying that everything already exists so nothing can ever be new. Even when something that may have been discovered years ago is repurposed for something else, a new treatment is created. Also, there are the newer class of targeted therapies that aren't carcinogenic. When some people keep repeating it over and over with the intention of scaring people it gets old... Most of us who have been here a while know it's nonsense so it's filed under BS but some new people can be frightened just for the sake of who-knows-why.

    Pete, you may know the answer and maybe it can help more people. Maybe it's a customized approach that will help only you. Who knows? If everyone who followed your lead had the exact same result (or better) I'd agree with you. I can say that my approach has given me 9 years with a quite good quality of life, no bag, great successful surgery, no complications, never had chemo withheld due to low blood counts so therefore while I haven't been cured, I'm living with cancer and doing great! But I know people who went where I went, did what I did, saw who I saw, and they're dead. Others are NED.

    There hasn't been a magical cure found (yet). So all I ask is for people to be careful before making absolute comments that use "always, never, will, all" and other words that leave no room for exceptions...

    And again, I'm VERY happy you've been doing treatments that have helped you. Will they always work for everyone? I have to say I have my doubts...

    It reminds me of the religion discussions. Some people found their way and that's FANTASTIC. Now I doubt that a Christian will convince a Muslim that they're following the wrong path to eternal salvation and visa-versa. And, is there even eternal salvation?

    Some like to play Monday Morning Quarterback. That's nice but anyone can tell a person what they SHOULD have done after the fact...

    thanks phil

    i see where your comments are targetted, your success, craig's are inspirational, hopefully mine too.

    the uncertainty factor is massive to me now, this NED stuff plays with my mind.

    you know i believe i have a workable set of therapies that would help most, and i bet in 2 years removab will be everywhere.

    how can i ever thankyou, you found all those removab links, remember when i was still in sydney checking it out. seems so long ago.

    well tomorrow i am getting hammered again, i should say my liver. i start sexond course of removab, trying to wipe out every last cell. how cool.

    the extent of success apparently depends on ecamp expression. i still think my health, my genetics, my qigong etc etc all synergise. i cannot wait to see how the first few go.

    but its peoples choice, i want no responsibility, i am not encouraging anyone to come, they can make a personal decision, just like i did. that said i will be here and i will help anyone on csn who wants a hand.

    i setup a portable paino in my apartment at the clinic tonight, one day somehow we should play some music and completely forget about this cancer stuff. but my music skills are rusty and basic. but i got plenty of time to practice between treatments, gym, enemas and making my documentary and writing my books. the interviews of the clinics patients will be compelling watching i think.

    my sydney onc, finally imported removab, he will test it on a sydney friend. its a step in the right direction, but they are not doing the full set of therapies. again onc's cherry picking, they are still drug based mind set not holistic , i doubt they will ever learn.

    hugs,

    pete

    ps i want use the word "cure" again, i think a set of benefical therapies is better. time will tell i think. if i kick the bucket tomorrow, say saying good about me. its unlikely, but the removab side effects, well you read them first, alas i experienced them second.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    It really saddens me that

    It really saddens me that some can't respect what others are doing. I am not seeing anyone saying, "Go out and try this...this is it, do this, do that." I'm seeing people put different strategies to beat this beast. Pete, you make me chuckle (it's your picture...u look like u're ready for an adventure). I applaud you for doing what you are doing.

    Judy

    thanks judy

    that photo was taken on christmas island, i was in this amazing underwater photo competition. i had 4 massive hammerhead sharks swim right past me and manta rays as well.

    it was a magnificent adverture, my last before the tumour was diagnosed.

    http://www.petertrayhurn.com/Other/2010-April-Christmas-and-Cocos/14717340_Kwb65f#!i=1098962641&k=Lv8rsRX&lb=1&s=X3

    http://www.petertrayhurn.com/Other/2010-April-Christmas-and-Cocos/14717340_Kwb65f#!i=1098963675&k=C8X2G4S

    hugs,

    pete

  • thxmiker
    thxmiker Member Posts: 1,278 Member

    thanks judy

    that photo was taken on christmas island, i was in this amazing underwater photo competition. i had 4 massive hammerhead sharks swim right past me and manta rays as well.

    it was a magnificent adverture, my last before the tumour was diagnosed.

    http://www.petertrayhurn.com/Other/2010-April-Christmas-and-Cocos/14717340_Kwb65f#!i=1098962641&k=Lv8rsRX&lb=1&s=X3

    http://www.petertrayhurn.com/Other/2010-April-Christmas-and-Cocos/14717340_Kwb65f#!i=1098963675&k=C8X2G4S

    hugs,

    pete

    Thanks for Sharing!

    Great Pics Pete!  Thanks for Sharing.

     

    Best Always, mike

     

    PS  Hopefully all of us will be remembered for our kind deeds.

  • Dyanclark
    Dyanclark Member Posts: 296
    Got your back

    Got your back on this AA.   I sometimes cant keep up with the new things on TV, or the doctor shows, eat this take that vitamin.   All I know is I am keeping my husband on a healthy diet, and I give him  the vitamins commonly  recommended.   D 3 etc.  

  • Dyanclark
    Dyanclark Member Posts: 296
    Got your back

    Got your back on this AA.   I sometimes cant keep up with the new things on TV, or the doctor shows, eat this take that vitamin.   All I know is I am keeping my husband on a healthy diet, and I give him  the vitamins commonly  recommended.   vitamin D, and a few others.   If we could buy the cure, then why did Steve Jobs not buy it????      

  • PhillieG
    PhillieG Member Posts: 4,866
    Dyanclark said:

    Got your back

    Got your back on this AA.   I sometimes cant keep up with the new things on TV, or the doctor shows, eat this take that vitamin.   All I know is I am keeping my husband on a healthy diet, and I give him  the vitamins commonly  recommended.   vitamin D, and a few others.   If we could buy the cure, then why did Steve Jobs not buy it????      

    Steve Jobs

    Hi Dyan,
    It's not about the money. The word on the street was that Steve Jobs had a very curable type of PC. One that had huge success/cure rate with "conventional treatment". He opted to try non-conventional treatments. They seem to have failed in his case. 

    Would he still be here if he did what his doctors suggested he do? Who knows. No one can say one way or the other since he choose his own route. He's certainly not here now though....

    I do believe that whatever path one chooses, there's the Luck Factor involved. It would certainly explain why what works for one doesn't always work for someone else with a near identical case.
    -p

  • annalexandria
    annalexandria Member Posts: 2,571
    Dyanclark said:

    Got your back

    Got your back on this AA.   I sometimes cant keep up with the new things on TV, or the doctor shows, eat this take that vitamin.   All I know is I am keeping my husband on a healthy diet, and I give him  the vitamins commonly  recommended.   D 3 etc.  

    Thanks!

    And this is OT, but we have a cat that looks just like your avatar!  His name is Smokey, because he looks like he fell face-first into a fireplace, but everyone calls him "Merp", because that's the sound he makes when he mews.  Think it's the Siamese in him...

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    PhillieG said:

    Steve Jobs

    Hi Dyan,
    It's not about the money. The word on the street was that Steve Jobs had a very curable type of PC. One that had huge success/cure rate with "conventional treatment". He opted to try non-conventional treatments. They seem to have failed in his case. 

    Would he still be here if he did what his doctors suggested he do? Who knows. No one can say one way or the other since he choose his own route. He's certainly not here now though....

    I do believe that whatever path one chooses, there's the Luck Factor involved. It would certainly explain why what works for one doesn't always work for someone else with a near identical case.
    -p

    If we could buy the cure, then why did Steve Jobs not buy it??

    A very interesting question.    If we could buy the cure, then why did Steve Jobs not buy it??

    My answer is we cannot buy the cure, we cannot buy our health with some vitamins and minerals and supplements. of course i beleive they can help.

    but only I can relax my brain, only i can take my body for a walk and feed my body healthy food.

    maybe the rich can pay someone else to go for a walk for them.

    of course money helps to buy access to medical services, but it does not necessarily mean the "rich guy" makes the right choices.

    it comes down to who you are going to trust, the easy answer is yourself.

    I don't know much about steve jobs story, I just hope he is resting peacefully. he battled his cancer his way, thats all any of us can do.

    implication that he could have done better using conventional, raises the issue of challenging someones personal choices.

    I don't think we can leave our health to luck, I think we have to make our own luck, or at least try too.

    I think our personal choices should be out of bounds and repsected. For example In future I hope never to say to anyone, your doing chemo, oh you should try alternatives.

    I will only point out my observations and conclusions in a general way, because what works for one, may not work for another. we are so unique. this is a blessing and a curse.

    hugs,

    Pete

    PS I met doctor Ra at the baden baden conference, he treated jobs. the choices we make today have profound implications for our future. Did jobs met this great doctor to late, i don't know. Its immaterial really. His case proves the point that money cannot buy a cure on its own. Maybe nothing can sometimes. Sometimes maybe money can buy a cure. I wish only for health, not money. but i need the money to pay for my medical treatment, so they are related.

  • Dyanclark
    Dyanclark Member Posts: 296
    PhillieG said:

    Steve Jobs

    Hi Dyan,
    It's not about the money. The word on the street was that Steve Jobs had a very curable type of PC. One that had huge success/cure rate with "conventional treatment". He opted to try non-conventional treatments. They seem to have failed in his case. 

    Would he still be here if he did what his doctors suggested he do? Who knows. No one can say one way or the other since he choose his own route. He's certainly not here now though....

    I do believe that whatever path one chooses, there's the Luck Factor involved. It would certainly explain why what works for one doesn't always work for someone else with a near identical case.
    -p

    Cure

    I did not know that about Steve Jobs, this sight is so interesting.   Everyday I read it I learn something knew.  The one thing I wish we could figure out is why some people get a cure and are told NED and others dont and they can be on same treatment, same stage cancer.  

    This cat of mine she is a Jewel her name is Sheba and she excels is sleep and rest.  We love her like a child.

  • annalexandria
    annalexandria Member Posts: 2,571
    Dyanclark said:

    Cure

    I did not know that about Steve Jobs, this sight is so interesting.   Everyday I read it I learn something knew.  The one thing I wish we could figure out is why some people get a cure and are told NED and others dont and they can be on same treatment, same stage cancer.  

    This cat of mine she is a Jewel her name is Sheba and she excels is sleep and rest.  We love her like a child.

    She's beautiful!

    Looks much more elegant than my goofy cat.

  • annalexandria
    annalexandria Member Posts: 2,571

    If we could buy the cure, then why did Steve Jobs not buy it??

    A very interesting question.    If we could buy the cure, then why did Steve Jobs not buy it??

    My answer is we cannot buy the cure, we cannot buy our health with some vitamins and minerals and supplements. of course i beleive they can help.

    but only I can relax my brain, only i can take my body for a walk and feed my body healthy food.

    maybe the rich can pay someone else to go for a walk for them.

    of course money helps to buy access to medical services, but it does not necessarily mean the "rich guy" makes the right choices.

    it comes down to who you are going to trust, the easy answer is yourself.

    I don't know much about steve jobs story, I just hope he is resting peacefully. he battled his cancer his way, thats all any of us can do.

    implication that he could have done better using conventional, raises the issue of challenging someones personal choices.

    I don't think we can leave our health to luck, I think we have to make our own luck, or at least try too.

    I think our personal choices should be out of bounds and repsected. For example In future I hope never to say to anyone, your doing chemo, oh you should try alternatives.

    I will only point out my observations and conclusions in a general way, because what works for one, may not work for another. we are so unique. this is a blessing and a curse.

    hugs,

    Pete

    PS I met doctor Ra at the baden baden conference, he treated jobs. the choices we make today have profound implications for our future. Did jobs met this great doctor to late, i don't know. Its immaterial really. His case proves the point that money cannot buy a cure on its own. Maybe nothing can sometimes. Sometimes maybe money can buy a cure. I wish only for health, not money. but i need the money to pay for my medical treatment, so they are related.

    I think you're on to something there, Pete...

    "our personal choices should be out of bounds and respected".  I think if everyone took this to heart, a lot of the quarreling could be reduced (which does not mean that there wouldn't be a place for civilized discussions about the impacts of chemo, the validity of alternatives, etc....it just means that when someone is already using a certain approach, other members should be respectful of that).  AA

  • tanstaafl
    tanstaafl Member Posts: 1,303 Member
    PhillieG said:

    Steve Jobs

    Hi Dyan,
    It's not about the money. The word on the street was that Steve Jobs had a very curable type of PC. One that had huge success/cure rate with "conventional treatment". He opted to try non-conventional treatments. They seem to have failed in his case. 

    Would he still be here if he did what his doctors suggested he do? Who knows. No one can say one way or the other since he choose his own route. He's certainly not here now though....

    I do believe that whatever path one chooses, there's the Luck Factor involved. It would certainly explain why what works for one doesn't always work for someone else with a near identical case.
    -p

    sj CAMeo

    Phil, ...The word on the street is aka idle gossip, in a population innumerate, techically illiterate, and getting worse every year.  Jobs might have done things better, certainly his alternative part.  Conventional medicine was simply too early in its game to have offered him good odds despite near infinite resources for several years.  Even some fierce CAM critics amongst  oncological doctors have acknowledged this.  Other critics look for venues to attack whenever, whatever, etc.  Jobs should be allowed to rest in peace.

  • PhillieG
    PhillieG Member Posts: 4,866
    tanstaafl said:

    sj CAMeo

    Phil, ...The word on the street is aka idle gossip, in a population innumerate, techically illiterate, and getting worse every year.  Jobs might have done things better, certainly his alternative part.  Conventional medicine was simply too early in its game to have offered him good odds despite near infinite resources for several years.  Even some fierce CAM critics amongst  oncological doctors have acknowledged this.  Other critics look for venues to attack whenever, whatever, etc.  Jobs should be allowed to rest in peace.

    What?

    My hairdresser lied to me???

    "In October 2003, Jobs was diagnosed with cancer, and in mid-2004, he announced to his employees that he had a cancerous tumor in his pancreas. The prognosis for pancreatic cancer is usually very poor; Jobs stated that he had a rare, far less aggressive type known as islet cell neuroendocrine tumor. Despite his diagnosis, Jobs resisted his doctors' recommendations for mainstream medical intervention for nine months, instead consuming a special alternative medicine diet in an attempt to thwart the disease. According to Harvard researcher Ramzi Amri, his choice of alternative treatment "led to an unnecessarily early death." According to Jobs's biographer, Walter Isaacson, "for nine months he refused to undergo surgery for his pancreatic cancer – a decision he later regretted as his health declined." Instead, he tried a vegan diet, acupuncture, herbal remedies and other treatments he found online, and even consulted a psychic. He also was influenced by a doctor who ran a clinic that advised juice fasts, bowel cleansings and other unproven approaches, before finally having surgery in July 2004." He eventually underwent a pancreaticoduodenectomy (or "Whipple procedure") in July 2004, that appeared to successfully remove the tumor. Jobs apparently did not receive chemotherapy or radiation therapy."

    -various sources

    The bottom line is that we all have to make our own decisions and live (or die) with them. No one knows what might have been but the "point" was that money does not equate to a cure.
    We all should be allowed to rest in peace...

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    PhillieG said:

    What?

    My hairdresser lied to me???

    "In October 2003, Jobs was diagnosed with cancer, and in mid-2004, he announced to his employees that he had a cancerous tumor in his pancreas. The prognosis for pancreatic cancer is usually very poor; Jobs stated that he had a rare, far less aggressive type known as islet cell neuroendocrine tumor. Despite his diagnosis, Jobs resisted his doctors' recommendations for mainstream medical intervention for nine months, instead consuming a special alternative medicine diet in an attempt to thwart the disease. According to Harvard researcher Ramzi Amri, his choice of alternative treatment "led to an unnecessarily early death." According to Jobs's biographer, Walter Isaacson, "for nine months he refused to undergo surgery for his pancreatic cancer – a decision he later regretted as his health declined." Instead, he tried a vegan diet, acupuncture, herbal remedies and other treatments he found online, and even consulted a psychic. He also was influenced by a doctor who ran a clinic that advised juice fasts, bowel cleansings and other unproven approaches, before finally having surgery in July 2004." He eventually underwent a pancreaticoduodenectomy (or "Whipple procedure") in July 2004, that appeared to successfully remove the tumor. Jobs apparently did not receive chemotherapy or radiation therapy."

    -various sources

    The bottom line is that we all have to make our own decisions and live (or die) with them. No one knows what might have been but the "point" was that money does not equate to a cure.
    We all should be allowed to rest in peace...

    thanks for the summary phil

    I liked 

    "we all should be allowed to rest in peace"

    now i would formally like to point out that I believe we should practice this while we are alive, 

    its the only way to assure us of this when we die.

    besides resting peacefully each day is not a bad way to live in my opinion, it works for me anyway.

    to each his own.

    hugs,

    Pete

    ps just for the record, jobs did not go to hallwang or see my danish doctor mikael nordfors who has a friends mum in remission with her pancreatic cancer with just tallberg powders and a range of alternative off label therapies. all of them unproven but effective. she is alive.

  • PhillieG
    PhillieG Member Posts: 4,866

    thanks for the summary phil

    I liked 

    "we all should be allowed to rest in peace"

    now i would formally like to point out that I believe we should practice this while we are alive, 

    its the only way to assure us of this when we die.

    besides resting peacefully each day is not a bad way to live in my opinion, it works for me anyway.

    to each his own.

    hugs,

    Pete

    ps just for the record, jobs did not go to hallwang or see my danish doctor mikael nordfors who has a friends mum in remission with her pancreatic cancer with just tallberg powders and a range of alternative off label therapies. all of them unproven but effective. she is alive.

    It's Making My Head Spin...

    Head Spin

     

  • annalexandria
    annalexandria Member Posts: 2,571
    PhillieG said:

    It's Making My Head Spin...

    Head Spin

     

    GIFs!!

    That's what this site needs...more GIFs!!

  • PhillieG
    PhillieG Member Posts: 4,866

    GIFs!!

    That's what this site needs...more GIFs!!

    :-)

    But it's of me! (Or is that the problem?)

    A new iPad app. It's fun. You should see the outtakes...

    Foot in Mouth

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    PhillieG said:

    :-)

    But it's of me! (Or is that the problem?)

    A new iPad app. It's fun. You should see the outtakes...

    Foot in Mouth

    as long as your head don't pop off

    how do you do that.

    what app ? maybe they got one for android.

    hugs,

    Pete

    ps I hope its not a chronic condition, the head spinning thing