IV stage, info treatment
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IV stage, info treatment

› Forums › General Melanoma Community › IV stage, info treatment

  • Post
    • July 18, 2011 at 10:58 am
    manu000
    Participant

    My girlfriend just before his 25 years was diagnosed with stage 4 melanoma metastases, has been affected to the brain and  lung and other lymph nodes, in the neck, in the abdomen and in the left leg.
    She has already faced an surgery radio therapy (gamma kinfe) to the head and started a new treatment "ipilimumab+fotemustina (Muphoran).
    The treatment effects did not know that they have, but it certainly she is not feeling well. Is losing its vitality and even his work with disabled boy start to have problems.
    Someone has experience with this therapy?

    My girlfriend just before his 25 years was diagnosed with stage 4 melanoma metastases, has been affected to the brain and  lung and other lymph nodes, in the neck, in the abdomen and in the left leg.
    She has already faced an surgery radio therapy (gamma kinfe) to the head and started a new treatment "ipilimumab+fotemustina (Muphoran).
    The treatment effects did not know that they have, but it certainly she is not feeling well. Is losing its vitality and even his work with disabled boy start to have problems.
    Someone has experience with this therapy?
    I am believes that this is only a moment along our lives, and that we can overcome it.
    I believe she is doing in therapy, but in the meantime I am also informing about various alternative treatments. You have experience about it?
    I informed myself on the Gerson method, Di Bella.
    Now, after reading his story, the journey to Ginny Fraiser (http://www.timesonline.co.uk/tol/life_and_style/article715413.ece), knew her history? what do you think about?

    thanks to all

Viewing 7 reply threads
  • Replies
      • July 18, 2011 at 12:09 pm
      FormerCaregiver
      Participant

      Welcome to our forum. Sorry to read that your girlfriend is stage 4. Ipilimumab (Yervoy)
      and fotemustine sounds like an interesting combination.

      Fotemustine is a type of chemotherapy that crosses the blood brain barrier and therefore
      could help with any brain mets. It has side effects that are the same as with other types
      of chemo. See:
      http://www.cancervic.org.au/about-cancer/types-treatments-trials/chemotherapy/side_effects_of_chemotherapy.html

      There are people here who are being treated with Yervoy. Hopefully they will give you
      their opinions on it.

      If your girlfriend is considering alternative treatments, please read this first:
      http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html

      Hope this helps.

      Frank from Australia

      • July 18, 2011 at 12:09 pm
      FormerCaregiver
      Participant

      Welcome to our forum. Sorry to read that your girlfriend is stage 4. Ipilimumab (Yervoy)
      and fotemustine sounds like an interesting combination.

      Fotemustine is a type of chemotherapy that crosses the blood brain barrier and therefore
      could help with any brain mets. It has side effects that are the same as with other types
      of chemo. See:
      http://www.cancervic.org.au/about-cancer/types-treatments-trials/chemotherapy/side_effects_of_chemotherapy.html

      There are people here who are being treated with Yervoy. Hopefully they will give you
      their opinions on it.

      If your girlfriend is considering alternative treatments, please read this first:
      http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html

      Hope this helps.

      Frank from Australia

      • July 18, 2011 at 12:45 pm
      lhaley
      Participant

      I'm sorry you've had to join us and that your young girlfriend is so sick.  

      The alternative therapies that you mentioned have been talked about here before.   I only remember one person several years ago that decided to go to Mexico to follow up on one of the treatments.  He did pass away but we did not believe that he ever went to get the treatment.   If they had been proven to work I'm sure many here would have tried it. You have to be careful of programs you hear about on the internet that claim a cure.  We only wish they were true.

      You might want to have the hospital check you girlfriends tumor for the b-raf mutation. There are trials around the world for the drug. They also have trials for people with brain metastices.  The trial group would test the tumor (if a local lab does it the trial people just test it themselves anyway) to see if she has the right mutation. 

      I hope you find something quickly that will slow this down for her.

      Linda

      • July 18, 2011 at 12:45 pm
      lhaley
      Participant

      I'm sorry you've had to join us and that your young girlfriend is so sick.  

      The alternative therapies that you mentioned have been talked about here before.   I only remember one person several years ago that decided to go to Mexico to follow up on one of the treatments.  He did pass away but we did not believe that he ever went to get the treatment.   If they had been proven to work I'm sure many here would have tried it. You have to be careful of programs you hear about on the internet that claim a cure.  We only wish they were true.

      You might want to have the hospital check you girlfriends tumor for the b-raf mutation. There are trials around the world for the drug. They also have trials for people with brain metastices.  The trial group would test the tumor (if a local lab does it the trial people just test it themselves anyway) to see if she has the right mutation. 

      I hope you find something quickly that will slow this down for her.

      Linda

        • July 18, 2011 at 1:38 pm
        manu000
        Participant

        Thanks to all for the welcome and thanks for the advice you give me.
        Unfortunately I am in this situation and want to know everything that is possible with your help and I hope to learn more.

        Before I forget that it was found the B-RAF mutation.

        thanks

        • July 18, 2011 at 1:38 pm
        manu000
        Participant

        Thanks to all for the welcome and thanks for the advice you give me.
        Unfortunately I am in this situation and want to know everything that is possible with your help and I hope to learn more.

        Before I forget that it was found the B-RAF mutation.

        thanks

      • July 18, 2011 at 2:24 pm
      MichaelFL
      Participant

      Hi,

      I see that you are in Italy.

      I could find no trials with ipilimumab and +fotemustine at clinicaltrials.gov. Is she being given this in a trial or compassionate use?

      I understand you are doing all you can, but please be cautious of things like the Gerson therapy, Neoplas, and things of that nature. It is expensive, was discredited by NCI, not proven by other outside studies, and no conclusions about the effectiveness of the Gerson therapy, either as an adjuvant to other cancer therapies or as a cure, can be drawn from any of the studies they reported.

      Here is some reading on Gerson Therapy from NCI:

      http://www.cancer.gov/cancertopics/pdq/cam/gerson/healthprofessional

      Just click on anything you wish to read on the left side of the page.

      As for Ginny Fraiser, we do not know her story or specific circumstances. She has written a book, and I believe she is a cancer coach, so I think she has much to gain by keeping her story out there.

      It is good that she is BRAF positive, this may open up some trials that may buy her some time until something else can be tried.

      Whatever you both decide to do, please make her doctors aware of it, so it is not in conflict with her treatments.

      Michael

      • July 18, 2011 at 2:24 pm
      MichaelFL
      Participant

      Hi,

      I see that you are in Italy.

      I could find no trials with ipilimumab and +fotemustine at clinicaltrials.gov. Is she being given this in a trial or compassionate use?

      I understand you are doing all you can, but please be cautious of things like the Gerson therapy, Neoplas, and things of that nature. It is expensive, was discredited by NCI, not proven by other outside studies, and no conclusions about the effectiveness of the Gerson therapy, either as an adjuvant to other cancer therapies or as a cure, can be drawn from any of the studies they reported.

      Here is some reading on Gerson Therapy from NCI:

      http://www.cancer.gov/cancertopics/pdq/cam/gerson/healthprofessional

      Just click on anything you wish to read on the left side of the page.

      As for Ginny Fraiser, we do not know her story or specific circumstances. She has written a book, and I believe she is a cancer coach, so I think she has much to gain by keeping her story out there.

      It is good that she is BRAF positive, this may open up some trials that may buy her some time until something else can be tried.

      Whatever you both decide to do, please make her doctors aware of it, so it is not in conflict with her treatments.

      Michael

        • July 18, 2011 at 2:53 pm
        manu000
        Participant

        hi,

        She became part of a trial protocol. What does it mean that this mix is not mentioned at clinicaltrials.gov?

        thanks to all

        • July 18, 2011 at 2:53 pm
        manu000
        Participant

        hi,

        She became part of a trial protocol. What does it mean that this mix is not mentioned at clinicaltrials.gov?

        thanks to all

        • July 18, 2011 at 7:28 pm
        MichaelFL
        Participant

        Clinicaltrials.gov is a website I and others here use to search clinical trials.

        It is a database of federally and privately supported clinical trials conducted in the United States and around the world.

        You can check it below: Just type melanoma and which drug or drugs you are interested in and trials will come up.

        http://clinicaltrials.gov/

        Michael

        • July 18, 2011 at 7:28 pm
        MichaelFL
        Participant

        Clinicaltrials.gov is a website I and others here use to search clinical trials.

        It is a database of federally and privately supported clinical trials conducted in the United States and around the world.

        You can check it below: Just type melanoma and which drug or drugs you are interested in and trials will come up.

        http://clinicaltrials.gov/

        Michael

      • July 19, 2011 at 1:03 am
      Charlie S
      Participant

      You will not find me so kind as others.

      Here is an option………………….why don't you and you girlfriend fly here, then we will go to the hardware store,, buy some plastic tubing and a funnel along with a tarp

      Tthen we will stop at the grocery store and buy some coffee.

      When we get to my apartment, you put the tarp on my bed while I brew the coffee, then, when that is done, you hike her ass up in the air and I stick the plastic tubing up her ass, screw the funnel in at the top and pour the coffee in until she screams.

      The Gerson Therapy is no more sophisticated than that and it is pure bullshit and is only meant to prey on people like you.

      I'm all about complimentary medicine and fully endorse it, but the course you suggest is nothing more than a fools chase. and you are stupid , ill informed, mis informed and living in some fantasy land i f you think otherwise.

      I know this is harsh, but use your head for something besides a hatrack.

       

      Charlie S

      • July 19, 2011 at 1:03 am
      Charlie S
      Participant

      You will not find me so kind as others.

      Here is an option………………….why don't you and you girlfriend fly here, then we will go to the hardware store,, buy some plastic tubing and a funnel along with a tarp

      Tthen we will stop at the grocery store and buy some coffee.

      When we get to my apartment, you put the tarp on my bed while I brew the coffee, then, when that is done, you hike her ass up in the air and I stick the plastic tubing up her ass, screw the funnel in at the top and pour the coffee in until she screams.

      The Gerson Therapy is no more sophisticated than that and it is pure bullshit and is only meant to prey on people like you.

      I'm all about complimentary medicine and fully endorse it, but the course you suggest is nothing more than a fools chase. and you are stupid , ill informed, mis informed and living in some fantasy land i f you think otherwise.

      I know this is harsh, but use your head for something besides a hatrack.

       

      Charlie S

        • July 19, 2011 at 8:36 am
        manu000
        Participant

        Grazie Micheal, guarderò con attenzione il sito.

        Hi Charlie S,

        Posso comprendere ciò che cerchi di farmi capire. Però credo che anche tu prima di me ti sia informato riguardo queste terapie. Io voglio informarmi su tutto ciò che concerne le possibili cure, e con anche il vostro aiuto scartare quelle inefficaci.

        In ogni caso sono convinto che le terapie naturali abbiano degli effetti su molte patologie. Come un ruolo fondamentale lo ha anche la nostra psiche.

        In ogni caso ti ringrazio per la tua opinione

        • July 19, 2011 at 9:46 am
        manu000
        Participant

        Sorry for the haste I wrote in Italian …

        Thanks Michael, I will watch carefully the site.

        Hi Charlie S

        I can understand what you want make me understand. But I believe that before me you also will be informed about these therapies. I want information on everything related to treatment options, and with your help also discard ineffective ones.

        In any case I am convinced that natural therapies have an effect on many diseases. As a fundamental role also our psyche.

        In any case, thank you for your opinion

        • July 19, 2011 at 9:46 am
        manu000
        Participant

        Sorry for the haste I wrote in Italian …

        Thanks Michael, I will watch carefully the site.

        Hi Charlie S

        I can understand what you want make me understand. But I believe that before me you also will be informed about these therapies. I want information on everything related to treatment options, and with your help also discard ineffective ones.

        In any case I am convinced that natural therapies have an effect on many diseases. As a fundamental role also our psyche.

        In any case, thank you for your opinion

        • July 19, 2011 at 8:36 am
        manu000
        Participant

        Grazie Micheal, guarderò con attenzione il sito.

        Hi Charlie S,

        Posso comprendere ciò che cerchi di farmi capire. Però credo che anche tu prima di me ti sia informato riguardo queste terapie. Io voglio informarmi su tutto ciò che concerne le possibili cure, e con anche il vostro aiuto scartare quelle inefficaci.

        In ogni caso sono convinto che le terapie naturali abbiano degli effetti su molte patologie. Come un ruolo fondamentale lo ha anche la nostra psiche.

        In ogni caso ti ringrazio per la tua opinione

        • July 19, 2011 at 1:19 pm
        boot2aboot
        Participant

        jeez Charlie, slow down, the guy is just frantic about his girlfriend…new to the waters and confused…but THERE is ONE point that is a good one you made…Fly to the U.S. go to MD Anderson along with all the medical records….

         

        MANU>>>>>I agree with Charlie, stop with the alternative treatments…Find Yervoy NOW whereever you can get it…DO THIS NOW  BEFORE IT IS TOO LATE

        • July 19, 2011 at 2:10 pm
        lhaley
        Participant

        reread what Manu wrote, she is on Yervoy.   It's easy to say to go to MD Anderson but if you are from another country I can't imagine how expensive it would be unless they have insurance that would cover.  It's also difficult to travel around the world when so ill and then to be away from family and familiar surroundings.  There are many considerations.

        • July 19, 2011 at 4:24 pm
        manu000
        Participant

        Although we leave for MD Anderson, what alternatives there could be?
        We are now followed by an excellent center of Milan where they say that doctors are specialists who follow us about melanoma.

        • July 19, 2011 at 4:24 pm
        manu000
        Participant

        Although we leave for MD Anderson, what alternatives there could be?
        We are now followed by an excellent center of Milan where they say that doctors are specialists who follow us about melanoma.

        • July 19, 2011 at 6:38 pm
        Lisa13
        Participant

        There are lots of alternative therapies out there, but my personal opinion is that they're wonderful to prevent cancers or heart disease, but once it's metastasized, it won't work to stop tumour growth. That being said, there is 1 person on this board who had brain and lung mets and has been NED for 10 years without any treatment other than mistletoe and other herbal injections. It worked for her, but she may be one of the very few who were lucky. Wonderful new medicine is available now for advanced melanoma and there are many people with Stage 4 melanoma who have beaten the odds and your girlfriend could be one of them.

        I tried a cocktail of herbs and naturopathic medicine while I was Stage 3c. 2 months later, I had lung mets, so all that was for nothing. I truly believe that alternative medicine is wonderful for the immune system, general health and in some rare cases, has shrunk cancers, but I believe the clinical trials and new meds available are the best fighting chance we have. We just have to keep going until something better comes along to kill off melanoma like it does for other cancers.

        Best of luck to you and your girlfriend. Don't ever give up!!

        Lisa

        • July 19, 2011 at 6:38 pm
        Lisa13
        Participant

        There are lots of alternative therapies out there, but my personal opinion is that they're wonderful to prevent cancers or heart disease, but once it's metastasized, it won't work to stop tumour growth. That being said, there is 1 person on this board who had brain and lung mets and has been NED for 10 years without any treatment other than mistletoe and other herbal injections. It worked for her, but she may be one of the very few who were lucky. Wonderful new medicine is available now for advanced melanoma and there are many people with Stage 4 melanoma who have beaten the odds and your girlfriend could be one of them.

        I tried a cocktail of herbs and naturopathic medicine while I was Stage 3c. 2 months later, I had lung mets, so all that was for nothing. I truly believe that alternative medicine is wonderful for the immune system, general health and in some rare cases, has shrunk cancers, but I believe the clinical trials and new meds available are the best fighting chance we have. We just have to keep going until something better comes along to kill off melanoma like it does for other cancers.

        Best of luck to you and your girlfriend. Don't ever give up!!

        Lisa

        • July 20, 2011 at 2:41 am
        FormerCaregiver
        Participant

        Lisa, I really agree with your comments. As I might have mentioned before, I have been
        interested in herbal medicine and the use of vitamin supplements for a very long time.
        Unfortunately, I could not find any natural treatment that would have any noticeable
        effect on metastasis or the growth of individual tumours. Although a number of things had
        the theoretical potential to work, my late wife and I found that it was impossible to know
        how much to take of any herb or supplement for it to have an anticancer effect.

        With any treatment, I think that one has to apply strict scientific principles as far as
        evidence goes. Scans are fairly accurate these days, and are the best way to see if any
        treatment is working.

        Take care

        Frank from Australia

        • July 20, 2011 at 2:41 am
        FormerCaregiver
        Participant

        Lisa, I really agree with your comments. As I might have mentioned before, I have been
        interested in herbal medicine and the use of vitamin supplements for a very long time.
        Unfortunately, I could not find any natural treatment that would have any noticeable
        effect on metastasis or the growth of individual tumours. Although a number of things had
        the theoretical potential to work, my late wife and I found that it was impossible to know
        how much to take of any herb or supplement for it to have an anticancer effect.

        With any treatment, I think that one has to apply strict scientific principles as far as
        evidence goes. Scans are fairly accurate these days, and are the best way to see if any
        treatment is working.

        Take care

        Frank from Australia

        • July 19, 2011 at 2:10 pm
        lhaley
        Participant

        reread what Manu wrote, she is on Yervoy.   It's easy to say to go to MD Anderson but if you are from another country I can't imagine how expensive it would be unless they have insurance that would cover.  It's also difficult to travel around the world when so ill and then to be away from family and familiar surroundings.  There are many considerations.

        • July 19, 2011 at 1:19 pm
        boot2aboot
        Participant

        jeez Charlie, slow down, the guy is just frantic about his girlfriend…new to the waters and confused…but THERE is ONE point that is a good one you made…Fly to the U.S. go to MD Anderson along with all the medical records….

         

        MANU>>>>>I agree with Charlie, stop with the alternative treatments…Find Yervoy NOW whereever you can get it…DO THIS NOW  BEFORE IT IS TOO LATE

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