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Failed Ipi/ Need Help with Chemo (Carbotaxol) & Phase I Trial/ Please Help

Forums General Melanoma Community Failed Ipi/ Need Help with Chemo (Carbotaxol) & Phase I Trial/ Please Help

  • Post
    Rocklove
    Participant

    After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me… The IPI was like feeding melanoma candy that it loved.

    Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

    After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me… The IPI was like feeding melanoma candy that it loved.

    Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

    Does anyone know if the Carbotaxol treatment would cause a delay in getting any kind of trial 1 treatment. I have heard of so many things that cause delays with trials……..I don't want to agree when I should disagree.

    Please help.

    Rocky (Stage IV LIver Mets)

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  • Replies
      melanomabigsis
      Participant

      Rocky,

      I'm sorry you are going through this. My brother was diagnosed last June, stage IV, 3 mos. to live. Nothing they would do for him. He went to Rush Medical Center in Chicago. He has taken CVT. His Dr. is Dr. Kaufman. He is wonderful!!!! My brother 's melanoma is shrinking everywhere. He had it in brain,lungs,bones, and abdomen. Maybe they can help you!

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      melanomabigsis
      Participant

      Rocky,

      I'm sorry you are going through this. My brother was diagnosed last June, stage IV, 3 mos. to live. Nothing they would do for him. He went to Rush Medical Center in Chicago. He has taken CVT. His Dr. is Dr. Kaufman. He is wonderful!!!! My brother 's melanoma is shrinking everywhere. He had it in brain,lungs,bones, and abdomen. Maybe they can help you!

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      James from Sydney
      Participant

      Hi Rocky, i hope you still get a delayed response from the Ippi, there are ststs that show some respond after 3 months.

      As far as i know most Trials want you to be clear of any drugs for 3 weeks before starting a new Trial, not sure if its the same over there. Compassionate use of other drugs may allow you immediate access, but Weber should know all this.

      Just another thoughts, i seem to remember most of your tumor burden is in your Liver have you considered the Delcath system which infuses only the Liver and not the rest of the body meaning they can give you a much larger dose and i believe its only 1 treatment, i contacted Delcath directly and they responded immediately, unfortunately for us there were no locations here in Australia.. Whilst this is not a systemic treatment it might buy valuable time. Also another thought what about the combo of MEK/BRAF i have read people are having some great success with. 

      Keep fighting Rocky you have previously responded to treatments and you will again.

      best wishes

      James

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        Vermont_Donna
        Participant

        Hi Rocky,

        I am so sorry to hear this news! I am hoping that people email you the info you need to help make your decision, I unfortunately have nothing to offer in way of information. But I am thinking of you and praying for you.

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi Rocky,

        I am so sorry to hear this news! I am hoping that people email you the info you need to help make your decision, I unfortunately have nothing to offer in way of information. But I am thinking of you and praying for you.

        Vermont_Donna

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      James from Sydney
      Participant

      Hi Rocky, i hope you still get a delayed response from the Ippi, there are ststs that show some respond after 3 months.

      As far as i know most Trials want you to be clear of any drugs for 3 weeks before starting a new Trial, not sure if its the same over there. Compassionate use of other drugs may allow you immediate access, but Weber should know all this.

      Just another thoughts, i seem to remember most of your tumor burden is in your Liver have you considered the Delcath system which infuses only the Liver and not the rest of the body meaning they can give you a much larger dose and i believe its only 1 treatment, i contacted Delcath directly and they responded immediately, unfortunately for us there were no locations here in Australia.. Whilst this is not a systemic treatment it might buy valuable time. Also another thought what about the combo of MEK/BRAF i have read people are having some great success with. 

      Keep fighting Rocky you have previously responded to treatments and you will again.

      best wishes

      James

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      MichaelFL
      Participant

      Gosh, I'm really sorry to read this Rocky.

      I guess it really depends on what trial you will be able to go on after carboplatin and taxol. Maybe Weber can get with MD Anderson and give you a list and you can look at the exclusion criteria for the trials that may be of interest after carbo/taxol?

      I am sure you are already you can also check http://clinicaltrials.gov/ yourself too.

      Not sure what else to say. Maybe take it because it is available now?

      Hang in there!

      Michael

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      MichaelFL
      Participant

      Gosh, I'm really sorry to read this Rocky.

      I guess it really depends on what trial you will be able to go on after carboplatin and taxol. Maybe Weber can get with MD Anderson and give you a list and you can look at the exclusion criteria for the trials that may be of interest after carbo/taxol?

      I am sure you are already you can also check http://clinicaltrials.gov/ yourself too.

      Not sure what else to say. Maybe take it because it is available now?

      Hang in there!

      Michael

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      Lori C
      Participant

      Rocky, Will was on carbo-taxol and it did have a good effect on the liver tumor burden.  It proved very toxic to him but he had tumor in over 80% of his liver when he started it.  His LDH was extremely high. 

      What are your options post-carbo-taxol?  Will, by the way, was a patient of Dr. Kaufman out of Rush, who was cited by another poster here.  Are you HLA +?  B-raf+? 

      At the time Will began the carbo-taxol, there were really no other options for him.  If you do go on it, make sure you have good nutritional support and good anti-nausea plans in place.  I didn't and that was a problem 

      If you are facing few other options at this point, I'd probably go with the chemo with the thought of buying time while reducing tumor burden. 

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      Lori C
      Participant

      Rocky, Will was on carbo-taxol and it did have a good effect on the liver tumor burden.  It proved very toxic to him but he had tumor in over 80% of his liver when he started it.  His LDH was extremely high. 

      What are your options post-carbo-taxol?  Will, by the way, was a patient of Dr. Kaufman out of Rush, who was cited by another poster here.  Are you HLA +?  B-raf+? 

      At the time Will began the carbo-taxol, there were really no other options for him.  If you do go on it, make sure you have good nutritional support and good anti-nausea plans in place.  I didn't and that was a problem 

      If you are facing few other options at this point, I'd probably go with the chemo with the thought of buying time while reducing tumor burden. 

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      Jim in Denver
      Participant

      Rocky:

      What about IL2 at Moffat?  It shows potentially much higher effectiveness if done just after Ipi.  Not sure MDA is worth the waiting since time is an issue.  Are brain mets an issue?  They should be addresed very soon if they are.  I don't recall if you are BRAF positive, but James has a point about MEK/ BRAF combo and it is available at Moffat (Phase I).

      Best Wishes,

      JIm

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      Jim in Denver
      Participant

      Rocky:

      What about IL2 at Moffat?  It shows potentially much higher effectiveness if done just after Ipi.  Not sure MDA is worth the waiting since time is an issue.  Are brain mets an issue?  They should be addresed very soon if they are.  I don't recall if you are BRAF positive, but James has a point about MEK/ BRAF combo and it is available at Moffat (Phase I).

      Best Wishes,

      JIm

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      Gene_S
      Participant

      Rocky, If you have any interest in alternative treatments do a search on "Ralph Moss and melanoma".

       I too am stage IV with liver mets. I will be taking my first ippi treatment this Friday.

      If this doesn't work for me , my doctor has suggested that the next step would be the Plexxikon's drug.

      ( Some info on it … Plexxikon is a leader in the structure-guided discovery and development of novel small molecule pharmaceuticals to treat human disease. The company’s lead compound, PLX4032, is in late-stage clinical trials for the treatment of melanoma).  

      Please keep us posted,

      Best wishes to you,

      Gene

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      Gene_S
      Participant

      Rocky, If you have any interest in alternative treatments do a search on "Ralph Moss and melanoma".

       I too am stage IV with liver mets. I will be taking my first ippi treatment this Friday.

      If this doesn't work for me , my doctor has suggested that the next step would be the Plexxikon's drug.

      ( Some info on it … Plexxikon is a leader in the structure-guided discovery and development of novel small molecule pharmaceuticals to treat human disease. The company’s lead compound, PLX4032, is in late-stage clinical trials for the treatment of melanoma).  

      Please keep us posted,

      Best wishes to you,

      Gene

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      vickirs
      Participant

      Rocky,

       

      I am in the same situation as you.  Everybody puts so much hope that ipi is going to be the cure but in reality it more people fail than get the help you so desperately need.  i just started a new trial Eisai inc. – E7080-G000-206.  Within in 2 weeks I am much stronger, my tumors are already shrinking, my pain level is down about 50% and i don't need the wheel chair for shorter trips.  This is the only drug in my year long battle that has actually given me hope.  The medicien in pill for with mild side effects.  They are expanding th trail because a lot of people are having similat experiences.  I go to Univ of Colorado withDr Gonzalez.  Good luck to you

      Vicki sheedy

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        Gene_S
        Participant

        Vicki,

        My oncologist told me that it is a 1 in 6 response rate for helping melanoma patients.

        The only thing that I don't know is how bad the patient is when they first started ippi.

        Maybe it works better when the melanoma has not progressed so far?

        Best wishes to you and to all of us fighting this disease.

        Gene_S 

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        Gene_S
        Participant

        Vicki,

        My oncologist told me that it is a 1 in 6 response rate for helping melanoma patients.

        The only thing that I don't know is how bad the patient is when they first started ippi.

        Maybe it works better when the melanoma has not progressed so far?

        Best wishes to you and to all of us fighting this disease.

        Gene_S 

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      vickirs
      Participant

      Rocky,

       

      I am in the same situation as you.  Everybody puts so much hope that ipi is going to be the cure but in reality it more people fail than get the help you so desperately need.  i just started a new trial Eisai inc. – E7080-G000-206.  Within in 2 weeks I am much stronger, my tumors are already shrinking, my pain level is down about 50% and i don't need the wheel chair for shorter trips.  This is the only drug in my year long battle that has actually given me hope.  The medicien in pill for with mild side effects.  They are expanding th trail because a lot of people are having similat experiences.  I go to Univ of Colorado withDr Gonzalez.  Good luck to you

      Vicki sheedy

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