SOME HELP FROM YOU MATES!

pepebcn
pepebcn Member Posts: 6,331 Member
edited February 2012 in Colorectal Cancer #1
I'm still offered to be on the dendritic cell vaccine Trail, but decided for folfox for the moment since it make wonders 3 years ago with me.So for the moment I'm quite well ,stable and hope we will se some regression in the next controls ,but this is my question , any of you have ever been in a successful trail ( so mean NED, or at least log time Stable?.)
Will appreciate your comments ,will help me in my next step if needed!.
Thanks in advance my friends!

Comments

  • tommycat
    tommycat Member Posts: 790 Member
    #2
    My thoughts Pepe
    I entered a Phase 3 clinical trial and recommend doing so to anyone who is dealing with a life-threatening disease. You get the standard of care PLUS cutting edge medicine that is poised to become part of the standard of care. I didn't want to look back and think I didn't to everything possible I could have done for myself.
    Dx 2009 Stage 3 rectal cancer, currently NED.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #3
    tommycat said:

    My thoughts Pepe
    I entered a Phase 3 clinical trial and recommend doing so to anyone who is dealing with a life-threatening disease. You get the standard of care PLUS cutting edge medicine that is poised to become part of the standard of care. I didn't want to look back and think I didn't to everything possible I could have done for myself.
    Dx 2009 Stage 3 rectal cancer, currently NED.

    Thanks Tori you know what kind of trail ? monoclonal?
    stem cells?
  • tommycat
    tommycat Member Posts: 790 Member
    #4
    pepebcn said:

    Thanks Tori you know what kind of trail ? monoclonal?
    stem cells?

    Oh gosh, I have the link but
    Oh gosh, I have the link but need to find it then will zip it over to you. Hey, since you're ahead of us by 12 hours, who won the SuperBowl???? Just kidding :)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    tommycat said:

    Oh gosh, I have the link but
    Oh gosh, I have the link but need to find it then will zip it over to you. Hey, since you're ahead of us by 12 hours, who won the SuperBowl???? Just kidding :)

    Hahahaha! don't know I been watching golf with a sergio Garcia
    Match!
  • tommycat
    tommycat Member Posts: 790 Member
    #6
    pepebcn said:

    Hahahaha! don't know I been watching golf with a sergio Garcia
    Match!

    http://clinicaltrials.gov/ct2
    http://clinicaltrials.gov/ct2/show/NCT00058474?term=oxaliplatin+rectal+cancer&recr=Open&state1=NA:US:CA&rank=1

    This was for rectal cancer...you had colon cancer right? But I hope it helps!
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #7
    Sorry Pepe, nothing to offer
    Sorry Pepe, nothing to offer except well wishes!

    plh4gail
  • gwhite
    gwhite Member Posts: 18
    #8
    Good on you, cobber!
    I just finished posting to Gerry O so I refer you to it to avoid repetition. This story does not with "alternative medcine" but a treatment modality that is designed to ENHANCE rather than replace the best treatment from modern medicine.
    She'll be right, mate!! ( If you aren't Australian, the above may seem a little silly and for that I apologize. I was in business in Australia for a few years and enjoyed it very much)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #9
    gwhite said:

    Good on you, cobber!
    I just finished posting to Gerry O so I refer you to it to avoid repetition. This story does not with "alternative medcine" but a treatment modality that is designed to ENHANCE rather than replace the best treatment from modern medicine.
    She'll be right, mate!! ( If you aren't Australian, the above may seem a little silly and for that I apologize. I was in business in Australia for a few years and enjoyed it very much)

    Thank you my friend but I'm very well for the moment!
    just interested in successful trails stories !.
    Lol.,hugs dear friend!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #10
    pepebcn said:

    Thank you my friend but I'm very well for the moment!
    just interested in successful trails stories !.
    Lol.,hugs dear friend!

    No one successful story .?
    Mates! .
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    No, sorry...
    I was one of the few lucky ones that the treatment for each cancer worked the first time. Actually, because of having the rectal cancer, it disallowed me from any trials on the breast cancer...skewed the results..

    Knuffels my firey Spaniard!

    K
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #12
    Pepe
    Trials have limited windows of opportunity, Folfox will be there forever.

    Take the trial, if it seems to not work out go back to Folfox.

    Blake
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #13
    virtual trials
    Virtual trial of one, based on most technical promise for the individual. Fewer permission hassles, at least some places. For us, immunochemo with mild toxicity, everything else non toxic. Chemonaive when started, it seems to stop the spread, killed a lot initially, dissolved some later, and slows down growth rates of remaining "old inventory" until we can find the right surgeon. Learning basics, considering possibilities, deciding, finding or importing stuff, getting support has been the effort.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #14
    Buckwirth said:

    Pepe
    Trials have limited windows of opportunity, Folfox will be there forever.

    Take the trial, if it seems to not work out go back to Folfox.

    Blake

    Yeh Buck but I'm having just a couple of nodes affected
    my main concern is what happens if in this four months trail does not work and cancer spreads to somewhere more serious?.
    Your coments will be appreciated , but the thing is that as per I see none here had a successful experience with trials beside tori!.
    Hugs! my friend!
  • janie1
    janie1 Member Posts: 753 Member
    #15
    tanstaafl said:

    virtual trials
    Virtual trial of one, based on most technical promise for the individual. Fewer permission hassles, at least some places. For us, immunochemo with mild toxicity, everything else non toxic. Chemonaive when started, it seems to stop the spread, killed a lot initially, dissolved some later, and slows down growth rates of remaining "old inventory" until we can find the right surgeon. Learning basics, considering possibilities, deciding, finding or importing stuff, getting support has been the effort.

    Pepe
    I assume this is the same vaccine trial that was just started at Roswell Park in NY.
    You can goggle Roswell Park cancer vaccine.
    The Phase 1 just started. There has been a lot of talk about it. To me, this sounds like the most interesting bit of information so far.
    I wish I could do both, chemo and the trial. Yes, it would be scary not to do the current chemo.
    I sure wish something becomes of this vaccine..... soon. The trial in NY accepted 20 people
    ....they received over 1000 inquiries.
    Hope all goes well for you.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #16
    janie1 said:

    Pepe
    I assume this is the same vaccine trial that was just started at Roswell Park in NY.
    You can goggle Roswell Park cancer vaccine.
    The Phase 1 just started. There has been a lot of talk about it. To me, this sounds like the most interesting bit of information so far.
    I wish I could do both, chemo and the trial. Yes, it would be scary not to do the current chemo.
    I sure wish something becomes of this vaccine..... soon. The trial in NY accepted 20 people
    ....they received over 1000 inquiries.
    Hope all goes well for you.

    If you are on a clinical
    If you are on a clinical trial don't they monitor you very closely?? Maybe they would see very fast if it's not working for you. Maybe check with onc. if you decide the trial is not for you and you leave the trial how soon you could go back onto your other chemo. I think the one at Roswell Park seems sounds like they try and get your own immune system to recognize and destroy the cancer, wonder if the trial you've been offered is the same. Sounds interesting. I would ask if your not actually getting the dendric cells if you'd be getting some kind of chemo..
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #17
    smokeyjoe said:

    If you are on a clinical
    If you are on a clinical trial don't they monitor you very closely?? Maybe they would see very fast if it's not working for you. Maybe check with onc. if you decide the trial is not for you and you leave the trial how soon you could go back onto your other chemo. I think the one at Roswell Park seems sounds like they try and get your own immune system to recognize and destroy the cancer, wonder if the trial you've been offered is the same. Sounds interesting. I would ask if your not actually getting the dendric cells if you'd be getting some kind of chemo..

    Hi smokey , in this case the results are at long term so even
    if monitor no way to see results before 4th months at least, just they control certain immune reactions thats all, of course you can abandon it but would be silly since you know no results will be shown before 4 months! also you can abandon if they see progression or spread in tumors but then would be late probably ,so you must be an ice man! hahaha! BtW the got lots of enquires from the US. hospitals and I think still accept people .
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #18
    janie1 said:

    Pepe
    I assume this is the same vaccine trial that was just started at Roswell Park in NY.
    You can goggle Roswell Park cancer vaccine.
    The Phase 1 just started. There has been a lot of talk about it. To me, this sounds like the most interesting bit of information so far.
    I wish I could do both, chemo and the trial. Yes, it would be scary not to do the current chemo.
    I sure wish something becomes of this vaccine..... soon. The trial in NY accepted 20 people
    ....they received over 1000 inquiries.
    Hope all goes well for you.

    Janie i have been already accepted but I refused the day before
    since not other chemo accepted until after month 4th, so a bit scary! Our trail is in Phase ll but don't want to give info about results yet since it seems dendritic cells don't show good results until few months later you have already been vaccinated ! I'm not good for that! hahahaha..
    Hugs!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #19
    my dear friend
    if i were given that option today i would take the vaccine,
    take the opportunity before you, it represents a better future, some hope.

    my long term survival depends on my immune system doing what it did well just before cancer started, that is destroying rogue cells at a precancerous stage.

    getting the dendritic cells to identify the cancer cells effectively is key. the other approach i am using at present to achieve this is called digestive enzyme therapy using pancreatic enzymes and bromelain in the absence of protein to remove the protective coating our tumour cells use to hide.

    view the time off chemo/folfox as a chemo break to build strength for the next stage of the battle. the is alot you can do with alternatives when off chemo. ie iv vit c, artemisinin.

    i would do a molecular analysis of my ctc's and find what therapies they recommend and i would do them on the quiet while on the trial. after all the are just supplements.

    i would heal my digestive system and detox my liver, not sure how this works if you have mets to the liver, but in principle the detox program i am on or elements of its protocol should be effective.

    i would do sfn therapy to activate 200 odd genes that turn on our cells internal repair mechanisms.

    i would do the fitgenes genetic test to find out all i would about my personal genetic expression with regard detox pathways and nutrition and immune system.

    i would then meditate and pray.

    also while on chemo break i would fix leaky gut and do a stool test and a heavy metal test just for fun.

    so that should take about 4 months while you are on the vaccine.

    of course juicing and tcm will not hurt either.

    good health to you my friend, message me anytime for details on any of this stuff. most of its on my blog.

    hugs,
    pete

    ps they are doing something similar to this vaccine in melbourne, hear as well for melanoma, and i was trying to fake a skin cancer to get on to it. only joking. but seriously it seems alot of places are pushing the dendric cell therapies. a friend of mine had his own vaccine made in germany over 2 years ago, he was stage 3 and he is clear today and i am well know knows. but so i know one guy who had the vaccine made and is going real well. his name is bob, he is a compounding chemist he gives me most of my supplements at cost. he is a legend and well.

    pps all of the areas i am trying may be useless, but its more interesting than TV.
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #20
    Can't offer any advice
    dare not to now :p just sending my love and hugs per usual. :-)

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