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Advice pls: systemic treatments stage 4

Forums General Melanoma Community Advice pls: systemic treatments stage 4

  • Post
    Terra
    Participant

    Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

     

    My husband is BRAF negative so I am assuming that ipi is the only one – does anyone know of the others?

    Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

     

    My husband is BRAF negative so I am assuming that ipi is the only one – does anyone know of the others?

    He had a lung nodule removed in June '10 and a lung node removed in January '11 -we will be having scans soon but I really want to be ready to discuss all and any options with her (most recent scans before surgery showed no other cancer although we have been watching some suspicious spots they have not changed and we don't what they are).

     

    Thank so much in advance

    Terra

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  • Replies
      Kim K
      Participant

      Sorry you are facing this.  I had similar discussions with my doctors a year ago and decided to try high dose IL-2.  To date, in spite of all the clinical trials and drugs like Ipi, high dose IL-2 has the highest rate of possible prolonged remission out of all other treatments.

      Around 6% will have a complete response.  Of those, the median survival is over 5 years.  If a recurrance happens, it tends to be a spot here or there and not the widespread wild fire typically seen.  If you are a complete responder and don't have a recurrance after 30 months, the survival median is still being set.  In one study, no one who went past 30 months without a recurrance, ever had one.  The longest survivor is out past 22 years without a recurrance.

      15-20% will have a partial response which will prolong survival.

      Biochemo may have a better response rate, but not as good a "cure" rate or overall survival.

      While toxic, if you can tolerate it, high dose IL-2 works or it won't and you can find that out within a few months.  The recovery is fairly rapid after that.

      You don't have the mutation so BRAF is probably out although some other inhibitors may help, or drugs like Ipi and other CTLA blockers.

      High dose IL-2 works best if you have a low tumor burden although there are longterm survivors that are NED that had multiple organ mets.

      You can qualify for most trials after having undergone high dose IL-2 whereas other trials / therapies may limit entering another trial if you fail it.

      Deciding on treatment is a crapshoot.  The main thing is to buy into the treatment and never look back if it dosen't work.  When decicing, be sure to note if plan B, C, or D will be affected by undergoing your initial treatment.  Some trials won't accept you if you had previous inhibitor or vaccine or CTLA inhibitors.  Leaving your options open and not closing a door is something to look at.  Some trials have a "washout" period that may vary.

      Regardless, there is no magic bullet and each person will respond differently.  You need to have an excellent relationship with open communication and ease of getting in contact with your treatment team.

      Best of luck,

      Kim

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      Kim K
      Participant

      Sorry you are facing this.  I had similar discussions with my doctors a year ago and decided to try high dose IL-2.  To date, in spite of all the clinical trials and drugs like Ipi, high dose IL-2 has the highest rate of possible prolonged remission out of all other treatments.

      Around 6% will have a complete response.  Of those, the median survival is over 5 years.  If a recurrance happens, it tends to be a spot here or there and not the widespread wild fire typically seen.  If you are a complete responder and don't have a recurrance after 30 months, the survival median is still being set.  In one study, no one who went past 30 months without a recurrance, ever had one.  The longest survivor is out past 22 years without a recurrance.

      15-20% will have a partial response which will prolong survival.

      Biochemo may have a better response rate, but not as good a "cure" rate or overall survival.

      While toxic, if you can tolerate it, high dose IL-2 works or it won't and you can find that out within a few months.  The recovery is fairly rapid after that.

      You don't have the mutation so BRAF is probably out although some other inhibitors may help, or drugs like Ipi and other CTLA blockers.

      High dose IL-2 works best if you have a low tumor burden although there are longterm survivors that are NED that had multiple organ mets.

      You can qualify for most trials after having undergone high dose IL-2 whereas other trials / therapies may limit entering another trial if you fail it.

      Deciding on treatment is a crapshoot.  The main thing is to buy into the treatment and never look back if it dosen't work.  When decicing, be sure to note if plan B, C, or D will be affected by undergoing your initial treatment.  Some trials won't accept you if you had previous inhibitor or vaccine or CTLA inhibitors.  Leaving your options open and not closing a door is something to look at.  Some trials have a "washout" period that may vary.

      Regardless, there is no magic bullet and each person will respond differently.  You need to have an excellent relationship with open communication and ease of getting in contact with your treatment team.

      Best of luck,

      Kim

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      jag
      Participant

      Terra, I chose Biochemotherapy as my first line of offense against melanoma, and not only did my tumors shrink they stabilized for over 1 year.  That said, if I had to do it over, I probably would have done interleukin 2 first(more than likely would have worked-instead I followed up with IL2.  Another bit of advice I would give would be to look for some sort of vaccine trial.  That can prime your husbands immune system for response to IL2, ipilimumab etc.  

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      jag
      Participant

      Terra, I chose Biochemotherapy as my first line of offense against melanoma, and not only did my tumors shrink they stabilized for over 1 year.  That said, if I had to do it over, I probably would have done interleukin 2 first(more than likely would have worked-instead I followed up with IL2.  Another bit of advice I would give would be to look for some sort of vaccine trial.  That can prime your husbands immune system for response to IL2, ipilimumab etc.  

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      Sharyn
      Participant

      Hi Terra,

      I'm in Mtl now, so I have no research with me here. Hoping to get home tomorrow night if we're spared an east coast storm. I'll see what I can find out for you. Meanwhile, the suggestions already posted  are a good  start.

      Hugs

      Sharyn, Stage IV

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      Sharyn
      Participant

      Hi Terra,

      I'm in Mtl now, so I have no research with me here. Hoping to get home tomorrow night if we're spared an east coast storm. I'll see what I can find out for you. Meanwhile, the suggestions already posted  are a good  start.

      Hugs

      Sharyn, Stage IV

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      JerryfromFauq
      Participant

      Kim responded very well to your question.  For "general" cases of melanoma IL-2 has the best proven record for the long term to date.  Ipi may exceed the IL-2 in the broad spectrum of cases, but only time will tell the long term results. Many things have worked for a few people, but even the long term results of any individual drug treatment for targeted cases can vary from complete succes to remission.  If you read Jimmy Breitfeller's writings on his Carepages Blog you will learn of a possible timing relationship between taking IPI and IL-2 and having a successful outcome.

      http://www.carepages.com/carepages/jimmyBreitfeller

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      JerryfromFauq
      Participant

      Kim responded very well to your question.  For "general" cases of melanoma IL-2 has the best proven record for the long term to date.  Ipi may exceed the IL-2 in the broad spectrum of cases, but only time will tell the long term results. Many things have worked for a few people, but even the long term results of any individual drug treatment for targeted cases can vary from complete succes to remission.  If you read Jimmy Breitfeller's writings on his Carepages Blog you will learn of a possible timing relationship between taking IPI and IL-2 and having a successful outcome.

      http://www.carepages.com/carepages/jimmyBreitfeller

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      Carmon in NM
      Participant

      Hi Terra – I agree with what Kim said about making a decision and then not second guessing yourself after. Also, being careful that choosing one treatment won't keep you from trying others.

      I am being treated at UNM Cancer Center in Albuquerque, NM. When I went from being Stage 4 with two brain mets treated with surgery and gamma knife to having a new met on my adrenal gland, we decided on a systemic approach. I had a number of trial options and my onc was very careful to plot a treatment plan so that one trial would not keep me from participating in the next option. It was my choice to go with a phase 2 combined drug trial of carboplatin, carbotaxol and temodar. 

      I had done some research on the phase 1 results of this trial where the dosages were set and saw there were some good results. An advantage for me with this particular trial is that temodar is one of the few drugs that crosses into the brain. After the second infusion I had a full body CT and a new brain MRI and the CT showed that the adrenal tumor had shrunk by more than 50% and no new brain mets.

      I am due for my next set of scans and infusion on the 16th and my husband and I are hoping so much that the good news will continue. My last infusion on this trial will be in March followed by surgery to remove the entire adrenal gland. If I have recurrance after that, there will be other trial options available to me as well as the option of ipi.

      It sounds as though you and your husband are coming at this with a calm and well thought out approach which is a great place to be in! Carmon

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      Carmon in NM
      Participant

      Hi Terra – I agree with what Kim said about making a decision and then not second guessing yourself after. Also, being careful that choosing one treatment won't keep you from trying others.

      I am being treated at UNM Cancer Center in Albuquerque, NM. When I went from being Stage 4 with two brain mets treated with surgery and gamma knife to having a new met on my adrenal gland, we decided on a systemic approach. I had a number of trial options and my onc was very careful to plot a treatment plan so that one trial would not keep me from participating in the next option. It was my choice to go with a phase 2 combined drug trial of carboplatin, carbotaxol and temodar. 

      I had done some research on the phase 1 results of this trial where the dosages were set and saw there were some good results. An advantage for me with this particular trial is that temodar is one of the few drugs that crosses into the brain. After the second infusion I had a full body CT and a new brain MRI and the CT showed that the adrenal tumor had shrunk by more than 50% and no new brain mets.

      I am due for my next set of scans and infusion on the 16th and my husband and I are hoping so much that the good news will continue. My last infusion on this trial will be in March followed by surgery to remove the entire adrenal gland. If I have recurrance after that, there will be other trial options available to me as well as the option of ipi.

      It sounds as though you and your husband are coming at this with a calm and well thought out approach which is a great place to be in! Carmon

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        Terra
        Participant

        Thank-you so much for your replies – I will take all the advice and discuss our options with the Dr on Thursday – everything is so confusing.  I will also read Jim's message on his blog.

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        Terra
        Participant

        Thank-you so much for your replies – I will take all the advice and discuss our options with the Dr on Thursday – everything is so confusing.  I will also read Jim's message on his blog.

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