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

I'm stealing this from a political site I frequent (where the infighting is about ten times worse than anything here, I might add).  This is a "rule" set forth by one long time member.  Before posting, ask yourself "Is it true?  Is it kind?  Is it necessary?".  If the answer to any one of those questions is "no", then don't post.  If I was the Queen of the Internet Universe, this would be my one rule too.  Peace to y'all.  AA

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Comments

  • Brenda Bricco
    Brenda Bricco Member Posts: 579
    I guess I can see everyone's

    I guess I can see everyone's perspective (assuming that you are referring to Winter's post). It does bother me when I see someone boasting about their latest treatment and quite honestly at a price that I will never be able to afford, it just seems a little insensitive to me I guess.

    I know that we all want to survive this and we are doing as much as we can to make that happen but I start to wonder... what kind of life is getting saved if you spend every penny and moment on thinking about cancer and grasping at every straw that comes our way. I can only answer for myself (Care taker btw), I wouldn't want to use up everything that my spouse and I have in this life on trying to survive, it would break my heart to sell my families home to chase more treatments knowing that there are no garuantees that any of them will work. I wouldn't want to end up leaving this stage of life and leave my family with out a home. I believe that our homes can be of comfort to us when we lose someone, there are so many memories that live in those houses. If the patient doesn't make it he or she goes on to glorious things (I believe) so do we really want to think of leaving them here with nothing but the memories of cancer and no comfort of a familiar home? I am not speaking of grand mansions or beautiful estates, I am speaking of our homes, the little barn where my horse sleeps at night (or should I give up the horse that has carried me in more ways than one since all this started)? Won't I need her even more if my best friend has to leave me? BTW there is a ton of rejection feelings when being left behind, I know my Dennis doesn't want to die but it still feels like I will be abandoned. It could very well come down to cancer tearing us apart against our will? Death ripping my husband away form me and then suddenly the man that I rely on emotionally and physically everyday of my life is suddenly gone. I can't call him, I can't have him hold me ever again. He is just gone and I will be here by myself; how do you process that!?

    How can we ever begrudge anyone using chemo, radiation, or surgery for those of us in the US? That is what we have deemed acceptable by our insurances, the only resources available to us if we can't come up with large sums of money for the treatments that may or not be the cure. So I guess if someone wants to down us for doing the best we can then go on and do it. When my husband was doing chemo, I juiced everything I got my hands on and he couldn't turn around without me making him drink something (not  even asking, just telling him to drink). Maybe that is part of the reason he did so well with the chemo and surgeries.

    I just think that we should not forget that we are all here at this forum for the same reasons. We should try to respect each others ways. I support you all for how ever you choose to fight this and I ask that you all repect and support me in my beliefs, even if they aren't your the same as yours.

    If someone is talking about something that we don't under stand then maybe we could be tolerent and know that there has to be room for everyones belief's and needs here. I know I would never intentionally hurt any of you, if I ever did I would make it right as fast as I can type an apology.

    Let's love each other... we are very much like a family so there will be times when we don't all agree but we can get passed all the bumps if we have the will to not hurt anyone.

    Sorry for spilling my guts on you guys... I guess I need a release; thanks for being here.

    Brenda

  • Varmint5
    Varmint5 Member Posts: 384
    T.H.I.N.K. (Another take on the "rule")

    This is posted at the reception desk at the infusion room where my daughter gets her chemo. I am as guilty as anybody for not following this "THINK" thing before I open my mouth. Gets me in trouble!

    T - Is it true?

    H - Is it helpful?

    I - Is it inspiring?

    N - Is it necessary?

    K - Is it kind?

    Sandy

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    lovelly post aa

     

    brenda i dont intend to boost, you see i shared all my  alt therapies, then the germans. now the results are positive, am i boosting.

    i am sorry you are unable to afford these therapies.

    the lady i was helping last night, who i gave the  gcmaf yogurt to, has raised funds from everywhere to get these treatments.

    money is restricting her care. she found a way.

    the better my results, the unfairer the situation becomes.

    did you see lisa a new comer to the forum, she is doing german vaccines, i will offer her encouragement and support.

    if she does well, i will congratulate her, not criticise or call her post a boost.

    i cannot  help our individual situations, other than say i am committed to getting these therapies available, i will help anyone trying to change there world, we all deserve access to these therapies asap.

    besides healing myself, thats all i can do.

    if i could i would all  here over but i cannot, i asked doctors for a freeby for a csn friend. the answer no. i am looking into german corporate sponsorship.

    at least its a dream, i have not critised chemo, but now i see these therapies are mutually exclusive to some extents.

    hugs,

    pete

    ps peoples personal treatment choices should not be criticised, not yours, inever have

     

  • jen2012
    jen2012 Member Posts: 1,607
    Great reminder AA! I think
    Great reminder AA! I think i may print and hang in all rooms as a reminder to my kids! I love Petes enthusiasm and energy and hope this is his cure! I understand what Brenda feels too...i think it may be harder as caregiver because we are afraid of being left alone with the worries that we missed something that could have saved them. It could drive us crazy ... and thats not living either. My husband doesnt want me thinking about and researching cancer all the time...wants to live in the today. What bothers me more than all the different opinions are the fsmily and friends that insist positive attitude is all you need ...and oh theyve come so far..he'll be fine. To me that almost insinuates that if yoy dont make it then its your fault for not wanting to enough. I think we could all agree thats furthest from the truth for those who havent made it. Sometimes i feel like its a crap shoot and those who make if will make it almost regardless of what they do.
  • janie1
    janie1 Member Posts: 753

    lovelly post aa

     

    brenda i dont intend to boost, you see i shared all my  alt therapies, then the germans. now the results are positive, am i boosting.

    i am sorry you are unable to afford these therapies.

    the lady i was helping last night, who i gave the  gcmaf yogurt to, has raised funds from everywhere to get these treatments.

    money is restricting her care. she found a way.

    the better my results, the unfairer the situation becomes.

    did you see lisa a new comer to the forum, she is doing german vaccines, i will offer her encouragement and support.

    if she does well, i will congratulate her, not criticise or call her post a boost.

    i cannot  help our individual situations, other than say i am committed to getting these therapies available, i will help anyone trying to change there world, we all deserve access to these therapies asap.

    besides healing myself, thats all i can do.

    if i could i would all  here over but i cannot, i asked doctors for a freeby for a csn friend. the answer no. i am looking into german corporate sponsorship.

    at least its a dream, i have not critised chemo, but now i see these therapies are mutually exclusive to some extents.

    hugs,

    pete

    ps peoples personal treatment choices should not be criticised, not yours, inever have

     

    Brenda
    I know that you have had and still are having an extremely hard time with this awful disease. It does that for sure. I hate what it does.

    Yes, Pete has thrown around the fees to his therapies. But you see, he is trying to help so many people. I don't expect to go to Germany, but what I am grateful for is that he is "drawing huge attention to this disease". At some point, many people WILL be helped by what he is doing, directly and indirectly. To that I am grateful, even if I am not the one who lasts long enough to get that help. I care beyond myself. People are dying every day. People much younger than myself, people with children, children themselves.

    And, Pete is not selling the family home. I read all of the posts (not so much lately, though), so that I can remember each person's story and what is going on with them......where they've been, what they hope for. And, a post several months ago, Pete actually said what his net worth is. He has ample money. His children and wife will have plenty of money in case something happens to him. He is not robbing them. If they couldn't live comfortably on that amount, then there is something seriously wrong. And, Pete was not a trust fund baby, meaning he made his own fortune. He put a lot of blood, sweat, and I'm sure tears.... into his work. He is trying to help himself obviously....who wouldn't......but his generosity is humbling.....to me...that is.

    Brenda, I am so happy Dennis is NED. I wish that we all were. I will never be unless I try things. You see, after a while chemo stops working....that is a fact.
    That is why people live 2, 3, 4, maybe 5 years. Yes, there are exceptions to the rule, if you add in ALL of the VARIABLES........but for the MAJORITY......people die. That is why some people see this much sooner than others and they start to get pro-active.

    Chemo doesn't work for me, but my doctor wants me to keep using it (and yes, this is at the #1 U.S. top institution), because they don't want to admit there isn't a lot of hope. Also, I don't even know if my liver can recover from the effects of chemo. Surgery is not an option. I already had a failed liver surgery. The doctor didn't even tell me, had to find out myself by getting a copy of the pathology report. I am a nurse, so I can understand a pathology report pretty well. Of course, the docs probably think I am a stupid idiot.

    You see, this is why sometimes, we have to help ourselves, FIGHT for ourselves. If anything, this is what I have learned from Pete.

    I may be able to get into an immunotherapy trial, if it isn't too late. It may, or may not help. I pray that I get in and that it does buy some time. I'm running out of time....FAST. I have elderly parents and inlaws who I want so badly to take care of. I don't want to have fun and travel and spend a lot of money.....i want to help those who no longer can help themselves.......i believe that is what we are here to do. Just my opinion.

    I pray for everyone here. I just don't have time to separate into lists who I will pray for, and who isn't worthy.
  • PhillieG
    PhillieG Member Posts: 4,866
    A.K.A. "Common Courtesy"

    It would be nice if the words "all, always, none, never, will, can" were used only after carefully reading one's post before they use them. I can understand being pumped up because a person choose a therapy (or numerous therapies) and had success with them. I'm very pleased that the chemo that I'm on (which is NOT carcinogenic contrary to continuing claims that ALL chemo are known carcinogens, and WILL ruin your immune system - SOME and CAN could make a FALSE statement TRUE. Amazing isn't it?) has been doing its job of targeting MY cancer and keeping things in check where I enjoy a quite good quality of life while living with cancer.

    As long as people continue to feel they know the answer there is little chance of some people thinking before they write...
    -phil

  • tachilders
    tachilders Member Posts: 313
    Agree with the "THINK" before

    Agree with the "THINK" before posting, but take issue with folks criticizing others for doing what they can to try and beat this disease.  I will likely never get to NED (unless I try some unconventional stuff like Pete in Germany), but does that mean I should take issue with others posting here that are NED?  My outlook is also not very good for long term survival on standard chemo, but should I take issue with those who have lived for 8, 10, more years and that post about it here?  Newsflash, life isn't fair, and neither is cancer.  Let's support and encourage everyone in their fight, regardless of whether or not we have the same opportunities or successes.  There are times when I do feel a little jealous of the folks on here that are NED or that have survived a long time with this disease, but I try not to let those feelings get into my posts.  We all have our blessings, and mine has been that I have tolerated chemo very well and have so far led a pretty normal life.  That could all change very quickly if my chemo stops working.  I also have a good job and good insurance, and a great support system at home that not everyone here has.  The tough part is that I have very advanced stage 4 disease, am not a candidate for surgery, and have 6 young kids and a wife that will likely have to get by w/out a dad in the not so diatant future.  Let's try to help and support each other as much as possible, and leave the pettiness out of our posts.  Best of luck to all with their disease and treatment.

    Tedd

  • Brenda Bricco
    Brenda Bricco Member Posts: 579

    lovelly post aa

     

    brenda i dont intend to boost, you see i shared all my  alt therapies, then the germans. now the results are positive, am i boosting.

    i am sorry you are unable to afford these therapies.

    the lady i was helping last night, who i gave the  gcmaf yogurt to, has raised funds from everywhere to get these treatments.

    money is restricting her care. she found a way.

    the better my results, the unfairer the situation becomes.

    did you see lisa a new comer to the forum, she is doing german vaccines, i will offer her encouragement and support.

    if she does well, i will congratulate her, not criticise or call her post a boost.

    i cannot  help our individual situations, other than say i am committed to getting these therapies available, i will help anyone trying to change there world, we all deserve access to these therapies asap.

    besides healing myself, thats all i can do.

    if i could i would all  here over but i cannot, i asked doctors for a freeby for a csn friend. the answer no. i am looking into german corporate sponsorship.

    at least its a dream, i have not critised chemo, but now i see these therapies are mutually exclusive to some extents.

    hugs,

    pete

    ps peoples personal treatment choices should not be criticised, not yours, inever have

     

    My post was general or

    My post was general or atleast meant to be. I didn't say any names other than Winter's because honestly I just can't remember who is doing what for treatment. I was just being very honest about my feelings, I wasn't trying to lay judgement on any one person.

    Pete, it was very nice of you to ask for help for the other CSN member. I don't believe you are trying to hurt anyone and you are trying to help your situation which will in turn help someone else one day.

    Trust me when I say that I am most thankful that Dennis is NED and I wish the same for eveyyone here.

    I posted what I was feeling at the moment; sorry if it seem rude.

    Brenda

  • janie1
    janie1 Member Posts: 753

    My post was general or

    My post was general or atleast meant to be. I didn't say any names other than Winter's because honestly I just can't remember who is doing what for treatment. I was just being very honest about my feelings, I wasn't trying to lay judgement on any one person.

    Pete, it was very nice of you to ask for help for the other CSN member. I don't believe you are trying to hurt anyone and you are trying to help your situation which will in turn help someone else one day.

    Trust me when I say that I am most thankful that Dennis is NED and I wish the same for eveyyone here.

    I posted what I was feeling at the moment; sorry if it seem rude.

    Brenda

    Brenda
    You weren't rude at all. Cancer is hard. I just wanted to explain why people do what they do....they want to stay alive, and help others.

    Pete and others (myself included) have taken a lot of flack over the months (mostly Pete and another man trying to save the life of his son).

    I'm always glad to see you, Brenda. I know that you hurt and are almost paralyzed with fear.....i thoroughly get it. I always hope that you are enjoying some of the time. Dennis is NED and hopefully will always be. But you know, there's new stuff on the horizon for this monster....it's looking good. That's what keeps me motivated. Hopefully that helps a little. Please, please try to enjoy. I know.....easier said than done.

    (( HUG ))
  • annalexandria
    annalexandria Member Posts: 2,571
    I think I would like to add

    that this was NOT aimed at any one person.  I just thought it was a good reminder for all of us (me included) that it's important to try and remember that there are real, live people on the other "side" of that computer screen.  I know I'm guilty of forgetting that at times.

  • PhillieG
    PhillieG Member Posts: 4,866

    I think I would like to add

    that this was NOT aimed at any one person.  I just thought it was a good reminder for all of us (me included) that it's important to try and remember that there are real, live people on the other "side" of that computer screen.  I know I'm guilty of forgetting that at times.

    Queen of the Internet Universe

    I just LOVE that title!

    Queen of the Internet

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

    Queen of the Internet Universe

    I just LOVE that title!

    Queen of the Internet

    Hahaha...

    and you, my dear, can be King of Photoshop!  Make us all look 20 years younger, and 30 pounds lighter, ok?

  • wawaju04976
    wawaju04976 Member Posts: 316

    Agree with the "THINK" before

    Agree with the "THINK" before posting, but take issue with folks criticizing others for doing what they can to try and beat this disease.  I will likely never get to NED (unless I try some unconventional stuff like Pete in Germany), but does that mean I should take issue with others posting here that are NED?  My outlook is also not very good for long term survival on standard chemo, but should I take issue with those who have lived for 8, 10, more years and that post about it here?  Newsflash, life isn't fair, and neither is cancer.  Let's support and encourage everyone in their fight, regardless of whether or not we have the same opportunities or successes.  There are times when I do feel a little jealous of the folks on here that are NED or that have survived a long time with this disease, but I try not to let those feelings get into my posts.  We all have our blessings, and mine has been that I have tolerated chemo very well and have so far led a pretty normal life.  That could all change very quickly if my chemo stops working.  I also have a good job and good insurance, and a great support system at home that not everyone here has.  The tough part is that I have very advanced stage 4 disease, am not a candidate for surgery, and have 6 young kids and a wife that will likely have to get by w/out a dad in the not so diatant future.  Let's try to help and support each other as much as possible, and leave the pettiness out of our posts.  Best of luck to all with their disease and treatment.

    Tedd

    There are people on here that

    There are people on here that do not have insurance or financial help. They are not saying negative things to those of us using the conventional treatments covered by insurance...

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Hahaha...

    and you, my dear, can be King of Photoshop!  Make us all look 20 years younger, and 30 pounds lighter, ok?

    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

  • herdizziness
    herdizziness Member Posts: 3,624
    And sometimes

    You just have to call a duck a duck.  For instance Pete claims this and that cure, no one is sure which is the correct cure that he claims to have cured him.  In the end I'd say it was the CHEMO he did in Germany and Australia, not the numorous and often unbelieveable stuff that he put his poor body through.

    And when people come on here just touting their supplements and their often expensive supplements, then they need called out as to the unbelievability of their claims.  And their are some mighty fine unbelievable claims, some purple juice of some sort being one of them that was touted to a newbie. 

    Sometimes people are plain scared and vunerable and gullible, and if others want to tip toe around unbelieveable claims in order to be nice, sweet and whatever, that's up to you, but since the death of LISA42, whom was eventually convinced that she failed to live past the cancer because she didn't start doing those crazy supplements first, that it was her fault.  I will always feel anger at the people that convinced her to go for the supplements and attempts to convince her juicing alone was going to cure her.  She didn't have the money for it, she had guilt because she purchased an expensive juicer.  She said something to the point of she had these expensive supplements and she worried about what she was taking away from her family.  She wanted a dang piece of cake, but others here had convinced her it was wrong, how dare they!!  That whole thing hurt, it hurt bad.

    So when someone comes on and claims his liver was healed by a supplement alone and etc., I'm going to call it as I see it.  I'm not going to tip toe around the issue in case I hurt their feelings.  Far better to hurt their feelings then have them hurt others on this board with bogus claims.

    Winter Marie

  • annalexandria
    annalexandria Member Posts: 2,571

    And sometimes

    You just have to call a duck a duck.  For instance Pete claims this and that cure, no one is sure which is the correct cure that he claims to have cured him.  In the end I'd say it was the CHEMO he did in Germany and Australia, not the numorous and often unbelieveable stuff that he put his poor body through.

    And when people come on here just touting their supplements and their often expensive supplements, then they need called out as to the unbelievability of their claims.  And their are some mighty fine unbelievable claims, some purple juice of some sort being one of them that was touted to a newbie. 

    Sometimes people are plain scared and vunerable and gullible, and if others want to tip toe around unbelieveable claims in order to be nice, sweet and whatever, that's up to you, but since the death of LISA42, whom was eventually convinced that she failed to live past the cancer because she didn't start doing those crazy supplements first, that it was her fault.  I will always feel anger at the people that convinced her to go for the supplements and attempts to convince her juicing alone was going to cure her.  She didn't have the money for it, she had guilt because she purchased an expensive juicer.  She said something to the point of she had these expensive supplements and she worried about what she was taking away from her family.  She wanted a dang piece of cake, but others here had convinced her it was wrong, how dare they!!  That whole thing hurt, it hurt bad.

    So when someone comes on and claims his liver was healed by a supplement alone and etc., I'm going to call it as I see it.  I'm not going to tip toe around the issue in case I hurt their feelings.  Far better to hurt their feelings then have them hurt others on this board with bogus claims.

    Winter Marie

    Hmmm,

    this conversation went well!  I didn't mean for it to be a chance for people to jump on and continue the same arguement, but maybe I posted too soon.   It was simply meant to be an expressed hope that we could all work on a higher degree of civility and compassion, understanding that none of us have the ultimate answer.  AA

  • wawaju04976
    wawaju04976 Member Posts: 316

    And sometimes

    You just have to call a duck a duck.  For instance Pete claims this and that cure, no one is sure which is the correct cure that he claims to have cured him.  In the end I'd say it was the CHEMO he did in Germany and Australia, not the numorous and often unbelieveable stuff that he put his poor body through.

    And when people come on here just touting their supplements and their often expensive supplements, then they need called out as to the unbelievability of their claims.  And their are some mighty fine unbelievable claims, some purple juice of some sort being one of them that was touted to a newbie. 

    Sometimes people are plain scared and vunerable and gullible, and if others want to tip toe around unbelieveable claims in order to be nice, sweet and whatever, that's up to you, but since the death of LISA42, whom was eventually convinced that she failed to live past the cancer because she didn't start doing those crazy supplements first, that it was her fault.  I will always feel anger at the people that convinced her to go for the supplements and attempts to convince her juicing alone was going to cure her.  She didn't have the money for it, she had guilt because she purchased an expensive juicer.  She said something to the point of she had these expensive supplements and she worried about what she was taking away from her family.  She wanted a dang piece of cake, but others here had convinced her it was wrong, how dare they!!  That whole thing hurt, it hurt bad.

    So when someone comes on and claims his liver was healed by a supplement alone and etc., I'm going to call it as I see it.  I'm not going to tip toe around the issue in case I hurt their feelings.  Far better to hurt their feelings then have them hurt others on this board with bogus claims.

    Winter Marie

    (No subject)

    Sealed

  • RobinKaye
    RobinKaye Member Posts: 93

    (No subject)

    Sealed

    No...

    That was an old post from 2011, revived by a new member looking for information on a treatment she used.

     

    Robin

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Hmmm,

    this conversation went well!  I didn't mean for it to be a chance for people to jump on and continue the same arguement, but maybe I posted too soon.   It was simply meant to be an expressed hope that we could all work on a higher degree of civility and compassion, understanding that none of us have the ultimate answer.  AA

    opps me neither

    sorry, i wont answer back, 

    hugs,

    pete

  • wawaju04976
    wawaju04976 Member Posts: 316

    opps me neither

    sorry, i wont answer back, 

    hugs,

    pete

    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

  • 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

    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.