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Ipi failure, next steps

Forums Cutaneous Melanoma Community Ipi failure, next steps

  • Post
    nickmac56
    Participant

      My wife's 12 week PET/CT scan was not good news.  Her original lung tumor has grown, plus multiple mets in both lungs, lymph nodes and kidneys, plus skin tumors.  Maybe there will be some lag effect, but given disease progression it does not seem consistent with what other late responders on Ipi have experienced even by week 16.

      My wife's 12 week PET/CT scan was not good news.  Her original lung tumor has grown, plus multiple mets in both lungs, lymph nodes and kidneys, plus skin tumors.  Maybe there will be some lag effect, but given disease progression it does not seem consistent with what other late responders on Ipi have experienced even by week 16.  We are going to try 4 weeks of Tamoxifin to see if hormones have anything to do with it (weak link and a long shot but women have more melanoma than men and my wife is convinced tumor ignition times to her cycle), do the 4 week follow-up Ipi scan, and then go the Interleukin-2 route (a two week hospital stint).  Also going to see Dr. Cassian Yee at Cancer care Alliance (U of W professor) about his clinical trial (taking your own T-cells, creating hordes of them, bathing them in anti-cancer stuff and re-infusing).  Our oncologist does know him, and is pretty skeptical of it as they've only had one long term durable remission, but will support us.  Timing is fine as it takes couple months to harvest enough T-cells – they will use previous tumor already excised – so we can do the IL-2 route and still do the UW trial.  After that, maybe the NIH trial.  But we are clearly in a race against a disease progressing faster than the meds are working . We are also looking into all the naturopathic stuff, even though we are already on the anti-cancer diet.  

      Questions:  anyone on a non-randomized NIH trial?   A friend has also told me about some clinic in Tijuana with some success with melanoma patients (yea, I know…)  – anyone have any experience with it?

      thanks, Nick

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    • Replies
        Gene_S
        Participant

          Nick,

          Google "Ralph Moss and melanoma". He has a report available

          that covers treatments in different countries see:

          http://www.cancerdecisions.com/mrstore/index.php?main_page=index&cPath=9_10_60

          His report is over 450 pages, a lot of info on melanoma. He also has info about Mexico there.

          Best wishes,

          Gene

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          Gene_S
          Participant

            Nick,

            Google "Ralph Moss and melanoma". He has a report available

            that covers treatments in different countries see:

            http://www.cancerdecisions.com/mrstore/index.php?main_page=index&cPath=9_10_60

            His report is over 450 pages, a lot of info on melanoma. He also has info about Mexico there.

            Best wishes,

            Gene

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              Jerry from Cape Cod
              Participant

                MEXICO… let's all go to Tijuani and get…..

                Let's me sell you a guide to melanoma for only $297.00.  Not a scam at all, we tell the whole truth and nothing but.

                I'm sure glad this Gene fella came along to tell us about this so we can read about all these "Highly Documented" miracles.

                Makes me sick to see people who prey on folks in when they are vulnerable.

                Jerry from Cape Cod

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                Jerry from Cape Cod
                Participant

                  MEXICO… let's all go to Tijuani and get…..

                  Let's me sell you a guide to melanoma for only $297.00.  Not a scam at all, we tell the whole truth and nothing but.

                  I'm sure glad this Gene fella came along to tell us about this so we can read about all these "Highly Documented" miracles.

                  Makes me sick to see people who prey on folks in when they are vulnerable.

                  Jerry from Cape Cod

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                  NicOz
                  Participant

                    Oh I am SO hearing you, Jerry!

                    I think a lot of people step back from these posts as they don't want to be accused of destroying hope and the like. But really? If people would just think about it logically for one second they'd see that these clinics make a lot of money. If their treatments were actually of benefit, then they WOULD undergo studies to validate their claims and be able to pretty much charge whatever they wanted for it and we'd all be happy to be there and pay for it. They have the funds to undertake the research- they just don't have the outcomes, so this way they can keep throwing up some testimonials and people will pay because they need to believe that SOMETHING is going to work.

                    I urge you to… Step away from Tijuana. These types of clinics are renowned for not even being able to document that their patients even had cancer to begin with. Their case studies rarely include any mention of previous AND concurrent conventional therapies undertaken by their clients, their so called success rates are usually documented on assumptions with no medical evidence i.e. perceived results rather than any actual evidence such as pathology, diagnostic imaging, etc.

                    Let me give you a link to describe how these clinics (and their "supposed" claims of cure) work in general:

                    http://www.users.on.net/~pmoran/cancer/Gerson.htm

                    It's pretty standard, unfortunately. Please at least take the time to apply some critical thinking to your decision as to whether or not it is worth it.

                    Perhaps it is worth getting some suggestions from the good people on here with regard to second opinions from other doctors with regard to what other possibilities may be available?

                    Best to you both!

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                    NicOz
                    Participant

                      Oh I am SO hearing you, Jerry!

                      I think a lot of people step back from these posts as they don't want to be accused of destroying hope and the like. But really? If people would just think about it logically for one second they'd see that these clinics make a lot of money. If their treatments were actually of benefit, then they WOULD undergo studies to validate their claims and be able to pretty much charge whatever they wanted for it and we'd all be happy to be there and pay for it. They have the funds to undertake the research- they just don't have the outcomes, so this way they can keep throwing up some testimonials and people will pay because they need to believe that SOMETHING is going to work.

                      I urge you to… Step away from Tijuana. These types of clinics are renowned for not even being able to document that their patients even had cancer to begin with. Their case studies rarely include any mention of previous AND concurrent conventional therapies undertaken by their clients, their so called success rates are usually documented on assumptions with no medical evidence i.e. perceived results rather than any actual evidence such as pathology, diagnostic imaging, etc.

                      Let me give you a link to describe how these clinics (and their "supposed" claims of cure) work in general:

                      http://www.users.on.net/~pmoran/cancer/Gerson.htm

                      It's pretty standard, unfortunately. Please at least take the time to apply some critical thinking to your decision as to whether or not it is worth it.

                      Perhaps it is worth getting some suggestions from the good people on here with regard to second opinions from other doctors with regard to what other possibilities may be available?

                      Best to you both!

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                      glewis923
                      Participant

                        Jerry -n- Nic-  Really!!   Jeez,  we could all just throw a party South of Cancun and hire a certified Mayan Witch Doctor.  Maybe someone, I dunno, one of the Tiheejuana clinic D"Drs" would volunteer for human sacrafice to appease the evial god od MEL !!    

                         

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                        glewis923
                        Participant

                          Jerry -n- Nic-  Really!!   Jeez,  we could all just throw a party South of Cancun and hire a certified Mayan Witch Doctor.  Maybe someone, I dunno, one of the Tiheejuana clinic D"Drs" would volunteer for human sacrafice to appease the evial god od MEL !!    

                           

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                          NicOz
                          Participant

                            $297 ???? Well, I could pay for it and read it over, certainly… OR I could buy some beers, make some margaritas, grab some meat and put on a bbq for my mates! *pauses for nanosecond* The beer, food and friends win. (I know you'll be surprised to hear that, Grady! :D)

                            You SAID we should open up a brain met clinic in Honduras last week!- your psychic abilities are obviously being enhanced my your (zapped, and about to be zapped THUS rapidly disappearing) mets, hun. Scary! Could you email me the lotto numbers please?

                            Now all we need to do is think about a name, what our speil is with regard to what actually causes the disease, throw in a couple of daily enemas, lots of "medication" retrieved from various animals (enzymes probably- they seem pretty popular for the past 50 years, so they HAVE to work!), name our price and we're away! [I'll be in touch after I get my off shore account squared away, love]

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                            NicOz
                            Participant

                              $297 ???? Well, I could pay for it and read it over, certainly… OR I could buy some beers, make some margaritas, grab some meat and put on a bbq for my mates! *pauses for nanosecond* The beer, food and friends win. (I know you'll be surprised to hear that, Grady! :D)

                              You SAID we should open up a brain met clinic in Honduras last week!- your psychic abilities are obviously being enhanced my your (zapped, and about to be zapped THUS rapidly disappearing) mets, hun. Scary! Could you email me the lotto numbers please?

                              Now all we need to do is think about a name, what our speil is with regard to what actually causes the disease, throw in a couple of daily enemas, lots of "medication" retrieved from various animals (enzymes probably- they seem pretty popular for the past 50 years, so they HAVE to work!), name our price and we're away! [I'll be in touch after I get my off shore account squared away, love]

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                              Gene_S
                              Participant

                                Jerry,

                                Since you haven't read this report, you have no right to say it is a scam!!! I have read this report and I will state that the info he has collected is very impressive. Nick has asked for advice about alternative therapies' and Mexico and I feel that the answers that he is seeking are in this report. There are no mention of ANY miracle cures in this report only the facts that the author has gathered for over 30 years. So unless you are willing to PURCHASE and UNDERSTAND what this report is about please keep your opinions to yourself!   BTW, he is not recommending Mexico.

                                Jerry wrote "Makes me sick to see people who prey on folks in when they are vulnerable."

                                It make me equally sick when people comment on a honest reply only to realize that the person replying is so ignorant.

                                Jerry wrote "I'm sure glad this Gene fella came along to tell us about this so we can read about all these "Highly Documented" miracles."

                                There are NONE in this report, just facts and melanoma info….  There are NO cures or suggestions whatsoever!

                                Best wishes,

                                Gene

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                                Gene_S
                                Participant

                                  Jerry,

                                  Since you haven't read this report, you have no right to say it is a scam!!! I have read this report and I will state that the info he has collected is very impressive. Nick has asked for advice about alternative therapies' and Mexico and I feel that the answers that he is seeking are in this report. There are no mention of ANY miracle cures in this report only the facts that the author has gathered for over 30 years. So unless you are willing to PURCHASE and UNDERSTAND what this report is about please keep your opinions to yourself!   BTW, he is not recommending Mexico.

                                  Jerry wrote "Makes me sick to see people who prey on folks in when they are vulnerable."

                                  It make me equally sick when people comment on a honest reply only to realize that the person replying is so ignorant.

                                  Jerry wrote "I'm sure glad this Gene fella came along to tell us about this so we can read about all these "Highly Documented" miracles."

                                  There are NONE in this report, just facts and melanoma info….  There are NO cures or suggestions whatsoever!

                                  Best wishes,

                                  Gene

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                                  glewis923
                                  Participant

                                    gee, let's all make a collaborative book of infinite MEL knowledge and insight.  We can undercut the compitition and sell it for $39.95 (plus shippin' -n- handlin')….THEN we can all take a 2 week trip to Playa del Carmen resort, instead of paying for Teeheejuana.

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                                    glewis923
                                    Participant

                                      gee, let's all make a collaborative book of infinite MEL knowledge and insight.  We can undercut the compitition and sell it for $39.95 (plus shippin' -n- handlin')….THEN we can all take a 2 week trip to Playa del Carmen resort, instead of paying for Teeheejuana.

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                                      NicOz
                                      Participant

                                        I DO like your style… but $39.95?? You don't think it's a little cheap? People won't think it's any good unless it costs a mint!… which, upon reflecion, must be why people charge exorbitant prices for this type of  'information' rather than supplying it for nothing if you had any genuine interest in helping people. All this time, I just thought they were greedy, but now I realise my mistake.

                                        (And now, despite telling myself that I was not going to revisit this thread, you made me laugh so hard I couldn't help myself. I hope you are suitably ashamed of yourself :P)

                                        Apologies for the tangent Nick, it's just sometimes more beneficial and surprisingly less costly than throwing something at a compuetr screen.

                                        I hope you find something that works for you both, I really do.

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                                        NicOz
                                        Participant

                                          I DO like your style… but $39.95?? You don't think it's a little cheap? People won't think it's any good unless it costs a mint!… which, upon reflecion, must be why people charge exorbitant prices for this type of  'information' rather than supplying it for nothing if you had any genuine interest in helping people. All this time, I just thought they were greedy, but now I realise my mistake.

                                          (And now, despite telling myself that I was not going to revisit this thread, you made me laugh so hard I couldn't help myself. I hope you are suitably ashamed of yourself :P)

                                          Apologies for the tangent Nick, it's just sometimes more beneficial and surprisingly less costly than throwing something at a compuetr screen.

                                          I hope you find something that works for you both, I really do.

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                                        glewis923
                                        Participant

                                          Seriously Nick,  I've looked into places like Issels (on Mexico side).  Sure, there's no great harm in trying I guess, but mostly they'll just give you "healthy food", enemas, sweatings, natural supplements, whatever.  Nothing you couldn't find legally anywhere else.  Many of these clinics also offer the same "USA" legal treatments such as IL-2 or Interferon based stuff.,  but I personally would not trust the quality of care or  drugs that would tend to eminate from places like Mexican border towns.   

                                          Love, Grady.

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                                          glewis923
                                          Participant

                                            Seriously Nick,  I've looked into places like Issels (on Mexico side).  Sure, there's no great harm in trying I guess, but mostly they'll just give you "healthy food", enemas, sweatings, natural supplements, whatever.  Nothing you couldn't find legally anywhere else.  Many of these clinics also offer the same "USA" legal treatments such as IL-2 or Interferon based stuff.,  but I personally would not trust the quality of care or  drugs that would tend to eminate from places like Mexican border towns.   

                                            Love, Grady.

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