Stage IV Treatment Decisions..
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Stage IV Treatment Decisions..

› Forums › General Melanoma Community › Stage IV Treatment Decisions..

  • Post
    • July 13, 2011 at 2:25 am
    MariaH
    Participant

    Dave and I met with Dr. Kushilani at Roswell today.  Very articulate, intelligent, and personable.  Went very well.  He offered up every option I have researched and even encouraged us to think "outside the box" of melanoma treatments (I.e.

    Dave and I met with Dr. Kushilani at Roswell today.  Very articulate, intelligent, and personable.  Went very well.  He offered up every option I have researched and even encouraged us to think "outside the box" of melanoma treatments (I.e. clinical trials).  After research, and speaking with all of the clinicians (including the surgical onc who did Dave's LND, who Dave has great respect for) I think Dave is leaning towards IL-2.  He is very healthy with metastases to the paratracheal lymph nodes only, and it really is the only treatment showing complete response in any percentage of patients.  He is healthy enough now to try it, where as if his disease progresses, he won't be.  If IL-2 fails, then he recommended IPI, and if that doesn't work, his tumors are being tested for B-RAF.  I have contacted NIH about the trials with TIL and IL-2, but they are only available if he has failed a prior treatment. 

    I am curious though, has anybody heard of radiation prior to IL-2?  I could have sworn I heard of at least a trial which was promising.  If any of you know of this, can you let me know?  I have heard that it increases the chances of an IL-2 response.

    Best wishes to all the fellow Mel Warriors,

     

    Maria & Dave

Viewing 3 reply threads
  • Replies
      • July 13, 2011 at 2:51 am
      ValinMtl
      Participant

      Hi Maria

      I like what your doctor recommends.  IL-2 then ipi..this sounds like a very reasonable and well-laid out plan.

      I failed ipi and IL-2 is not available in Quebec so I am actually on the TIL at NIH.  I don't know about the radiation prior to IL-2 but I would advise you to tread carefully in the event that you rule out further options.  For instance, I should have tried IL-21 in Canada before ipi..having had ipi I can no longer participate in that trial.

      TIL exclusion # 12 is:

      Prior radiation therapy that, in the judgment of the radiation oncologist, precludes the administration of total body irradiation.

      Now, I did have radiation but only in the area of the upper thigh so fortunately that did not prevent me from this opportunity.

      Val, Stage IV…failed ipi, temodar, inteferon, numerous surgeries..currently on TIL

      • July 13, 2011 at 2:51 am
      ValinMtl
      Participant

      Hi Maria

      I like what your doctor recommends.  IL-2 then ipi..this sounds like a very reasonable and well-laid out plan.

      I failed ipi and IL-2 is not available in Quebec so I am actually on the TIL at NIH.  I don't know about the radiation prior to IL-2 but I would advise you to tread carefully in the event that you rule out further options.  For instance, I should have tried IL-21 in Canada before ipi..having had ipi I can no longer participate in that trial.

      TIL exclusion # 12 is:

      Prior radiation therapy that, in the judgment of the radiation oncologist, precludes the administration of total body irradiation.

      Now, I did have radiation but only in the area of the upper thigh so fortunately that did not prevent me from this opportunity.

      Val, Stage IV…failed ipi, temodar, inteferon, numerous surgeries..currently on TIL

        • July 13, 2011 at 10:51 am
        MariaH
        Participant

        Thanks for responding Val.  The onc said that there are studies saying IPI can work after IL-2, but none have been done on IPI then IL-2. It is so frustrating not knowing if a certain treatment you want to try will exclude you from another down the road.  Please keep me posted on how the trial is going for you.  I pray that it will be the magic combo!

        Maria

        • July 13, 2011 at 10:51 am
        MariaH
        Participant

        Thanks for responding Val.  The onc said that there are studies saying IPI can work after IL-2, but none have been done on IPI then IL-2. It is so frustrating not knowing if a certain treatment you want to try will exclude you from another down the road.  Please keep me posted on how the trial is going for you.  I pray that it will be the magic combo!

        Maria

        • July 13, 2011 at 6:54 pm
        jim Breitfeller
        Participant

        Maria, I know personally, patients that have done Ipi and then HD IL-2 and had a complete response. I am one: the other is a Dermatologist from Texas. Dr. Vivian Bucay.

        http://www.skincancer.org/surviving-advanced-melanoma.html

         

        Other patients have done IL-2 then Ipi and also had responses.

        Hi Jimmy

        Your theory sounds very interesting! Here is the facts:
        Late October: PET/CT-scans showed app. 5-6 mets in each lung. The biggest was app.20 mm. They didnt count or measured.

        November 15: interferon
        November 22-26: interleukin-2

        December 6: interferon 
        December 13-17: interleukin-2

        Midway PET/CT-scans showed no activity in any met (PET scans negative), and some mets had even shrunk a little bit

        January 3: interferon
        January 10-14: interleukin-2

        January 24: interferon
        January 31-February 4: interleukin-2

        PET/CT-Scans showed 2 active mets, one of them had grown a lot relatively, now 32 mm in size.

        March 11: Ipilimumab
        April 4: Ipilimumab 
        April 27: Ipilimumab
        May 18: Ipilimumab

        CT-Scans showed the big met had disappeared completely. Another small mets still there, but probably necrotic? We were told that it was only neccessary with CT to measure the response. Therefore an eventual activity couldnt be determined?!

        Don´t hesitate to email me for further questions! 🙂

        Best wishes

         

        Jimmy B

         

         

        • July 13, 2011 at 6:54 pm
        jim Breitfeller
        Participant

        Maria, I know personally, patients that have done Ipi and then HD IL-2 and had a complete response. I am one: the other is a Dermatologist from Texas. Dr. Vivian Bucay.

        http://www.skincancer.org/surviving-advanced-melanoma.html

         

        Other patients have done IL-2 then Ipi and also had responses.

        Hi Jimmy

        Your theory sounds very interesting! Here is the facts:
        Late October: PET/CT-scans showed app. 5-6 mets in each lung. The biggest was app.20 mm. They didnt count or measured.

        November 15: interferon
        November 22-26: interleukin-2

        December 6: interferon 
        December 13-17: interleukin-2

        Midway PET/CT-scans showed no activity in any met (PET scans negative), and some mets had even shrunk a little bit

        January 3: interferon
        January 10-14: interleukin-2

        January 24: interferon
        January 31-February 4: interleukin-2

        PET/CT-Scans showed 2 active mets, one of them had grown a lot relatively, now 32 mm in size.

        March 11: Ipilimumab
        April 4: Ipilimumab 
        April 27: Ipilimumab
        May 18: Ipilimumab

        CT-Scans showed the big met had disappeared completely. Another small mets still there, but probably necrotic? We were told that it was only neccessary with CT to measure the response. Therefore an eventual activity couldnt be determined?!

        Don´t hesitate to email me for further questions! 🙂

        Best wishes

         

        Jimmy B

         

         

        • July 13, 2011 at 7:42 pm
        MariaH
        Participant

        Thanks for replying Jimmy!  In your opinion, would it be adviseable to do IPI first, then IL-2 or would it not matter?

        • July 13, 2011 at 7:42 pm
        MariaH
        Participant

        Thanks for replying Jimmy!  In your opinion, would it be adviseable to do IPI first, then IL-2 or would it not matter?

        • July 13, 2011 at 11:25 pm
        jim Breitfeller
        Participant

        Maria,

        Based on the science behind the two therapies, I would do the Ipi first, have your ALC (Absolute Lymphocyte Count) taken proir to starting the therapy. If The ALC doesn't increase by the week 7-12 , then I would discontinue the Ipi treatment and go on to the HD IL-2 therapy or biochemo. With the tregs knocked out, you should activate the immune response with IL-2 or Biochemo.

         

        Do you have  a lot of tumor burden? Tumors recruit the Tregs that surpress the immune system. If you have alot of tumors, you may want to do low-dose whole body radiation. This will help shed tumor-specific protein that would be comsumed by the macrophages and present tumor specific antigens on their surfaces. These cells are needed with the right antigen to activate the CD-8 T-cells to generate the right  immune response.

         

        Best regards

         

        Jimmy B

        • July 14, 2011 at 2:51 am
        MariaH
        Participant

        Thanks again Jimmy! I have been in contact with Dr. Curti's office in Portland (see post below), and they are saying that they are finding a higher response rate when doing radiation to said tumors (studies so far have been to the liver and lung, although a more comprehensive study will look into more areas, including bone).  A paper is supposed to be published very soon, but he is willing to work with Khushalani at Roswell, considering we cannot travel to Portland, OR from Buffalo, NY to assist us if Dave wishes to try this.  We are waiting for B-RAF results as well from Roswell.  We have until the 27th of July for Dave to make a decision.  It is very difficult to choose IPI first since it is so new, and there have already had positive results (although minimal) with Il-2, and his tumor burden is limited to his upper paratracheal lymph nodes only – which is good. 

        So much information out there, and I really appeciate you guidance.  We have a good oncologist who is willing to work with us, and for that I am very blessed.

        Thank you so much for your insight…and for all you do.

        Maria & Dave

        • July 14, 2011 at 2:51 am
        MariaH
        Participant

        Thanks again Jimmy! I have been in contact with Dr. Curti's office in Portland (see post below), and they are saying that they are finding a higher response rate when doing radiation to said tumors (studies so far have been to the liver and lung, although a more comprehensive study will look into more areas, including bone).  A paper is supposed to be published very soon, but he is willing to work with Khushalani at Roswell, considering we cannot travel to Portland, OR from Buffalo, NY to assist us if Dave wishes to try this.  We are waiting for B-RAF results as well from Roswell.  We have until the 27th of July for Dave to make a decision.  It is very difficult to choose IPI first since it is so new, and there have already had positive results (although minimal) with Il-2, and his tumor burden is limited to his upper paratracheal lymph nodes only – which is good. 

        So much information out there, and I really appeciate you guidance.  We have a good oncologist who is willing to work with us, and for that I am very blessed.

        Thank you so much for your insight…and for all you do.

        Maria & Dave

        • July 13, 2011 at 11:25 pm
        jim Breitfeller
        Participant

        Maria,

        Based on the science behind the two therapies, I would do the Ipi first, have your ALC (Absolute Lymphocyte Count) taken proir to starting the therapy. If The ALC doesn't increase by the week 7-12 , then I would discontinue the Ipi treatment and go on to the HD IL-2 therapy or biochemo. With the tregs knocked out, you should activate the immune response with IL-2 or Biochemo.

         

        Do you have  a lot of tumor burden? Tumors recruit the Tregs that surpress the immune system. If you have alot of tumors, you may want to do low-dose whole body radiation. This will help shed tumor-specific protein that would be comsumed by the macrophages and present tumor specific antigens on their surfaces. These cells are needed with the right antigen to activate the CD-8 T-cells to generate the right  immune response.

         

        Best regards

         

        Jimmy B

      • July 13, 2011 at 3:18 am
      ockelly
      Participant

      Maria,

      I responded to your last post "pathology confirmed…."  about IL2 and radiation.  Dr Curti at Portland Providence Cancer Center (Oregon) does a combination treatment and is having amazing results with it.  I'm sure your Onc could contact him.  He is an avid researcher and loves to discuss his studies.  Reread my last post,  I copied and pasted a comment from one of his patients who has received the IL2 and radiation tx.

      Good luck.

      Kelly

      • July 13, 2011 at 3:18 am
      ockelly
      Participant

      Maria,

      I responded to your last post "pathology confirmed…."  about IL2 and radiation.  Dr Curti at Portland Providence Cancer Center (Oregon) does a combination treatment and is having amazing results with it.  I'm sure your Onc could contact him.  He is an avid researcher and loves to discuss his studies.  Reread my last post,  I copied and pasted a comment from one of his patients who has received the IL2 and radiation tx.

      Good luck.

      Kelly

        • July 13, 2011 at 10:58 am
        MariaH
        Participant

        Thank you Kelly – I knew it was somewhere.  Was the patient a member of the MPIP or was that off of his website?  I brought it up to Kushalani, and he said that it is not standard practice.  I want to get a piece of paper in front of him (so I don't look like one of those people who just sits on the computer all day grasping at straws, although that's exactly what I do) to take it seriously.

        I'll keep you posted on what his onc decides.

        Best wishes,

         

        Maria

        • July 13, 2011 at 10:58 am
        MariaH
        Participant

        Thank you Kelly – I knew it was somewhere.  Was the patient a member of the MPIP or was that off of his website?  I brought it up to Kushalani, and he said that it is not standard practice.  I want to get a piece of paper in front of him (so I don't look like one of those people who just sits on the computer all day grasping at straws, although that's exactly what I do) to take it seriously.

        I'll keep you posted on what his onc decides.

        Best wishes,

         

        Maria

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