Husband now Stage 4
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Husband now Stage 4

› Forums › General Melanoma Community › Husband now Stage 4

  • Post
    • April 30, 2014 at 12:19 pm
    FayFighter
    Participant

    I am posting on the forum as I respect and think all the membershere are amazing. You have all kept me sane for the past 8 months but it looks like things are about to ramp up.  We will be meeting with two separate melanoma specialists (oncologists at Penn and MSKCC) and the surgeons in the next couple weeks.

    My husband had what was thought to be premelanocytic nevi in 2010 lower left calf.  July 2013 bump now appears at site under skin by originial lesion and he progresses to have an enlarged lymph note in groin.  Its metastatic melanoma and slides from 2010 are reread as melanoma by MSKCC.

    August 2013 Lymphadenectomy(just uppers/cloquet clear) and removal of calf lesion.

    October 2013 start of Ipi 3mg/kg (he did get four cycles in)

    December 2013 Colitis Tx with Remicade and Prednisone

    February 2014 Genetic Profiling of tumor reveal NRAS mutation

    February 2014 Brain MRI and CT Chest abdomen Clear

    Last monday PET shows lesion at originial site on calf, upper thigh of affected leg and spot in gastric body

    Upper endoscopy this past Monday reveals 3.5 cm melanoma (just in ulcerated region)

    We meet with MSKCC surgeon who removed lesions in leg/groin this past August today.  Friday the team from PENN…talk of Expanded Access for Anti PD 1.  Saving Mek inhibitors for later as they are not as durable.

    Any advice suggestion words of support appreciated. 

    And thank you all.

    Angela Wife to Mike (fayfighter)

     

Viewing 5 reply threads
  • Replies
      • April 30, 2014 at 1:02 pm
      JC
      Participant

      Sorry for your situation.  Slides from 2010 reread as melanoma. . that is extremely scary, there are people who have had 20, 30, 40+ biopsies and it only takes just one to be misread – are we to get 2nd opinions on every single biopsy that comes back benign?

      • April 30, 2014 at 1:02 pm
      JC
      Participant

      Sorry for your situation.  Slides from 2010 reread as melanoma. . that is extremely scary, there are people who have had 20, 30, 40+ biopsies and it only takes just one to be misread – are we to get 2nd opinions on every single biopsy that comes back benign?

      • April 30, 2014 at 1:02 pm
      JC
      Participant

      Sorry for your situation.  Slides from 2010 reread as melanoma. . that is extremely scary, there are people who have had 20, 30, 40+ biopsies and it only takes just one to be misread – are we to get 2nd opinions on every single biopsy that comes back benign?

      • April 30, 2014 at 1:46 pm
      BrianP
      Participant

      Angela,

      Can you add a little clarification to your husband's case.  Did he get the ipi as part of the ipi vs. interferon trial.  I'm assuming he was NED when he received the ipi.  Was the lesion in the upper intestines biopsied when they did the endoscopy?  Can this new disease be resected and are you all considering that?  If it is resectable that is great but it does limit your treatment options but there are a few trials right now for adjuvant treatment.  It's hard to go wrong with one of the PD1 treatments.  If I was looking right now I think I'd try to finding a PD-1 combo trial but they are probably getting harder to find.  You might look for a PD1+kir (I think there's one at MSKCC) or PD1+TIL (I think Moffitt is about to start one of these).  You are in a great place for treatment so I'm sure you are in good hands. 

      Brian

        • April 30, 2014 at 5:56 pm
        FayFighter
        Participant

        I am sorry for now being more specific. He got the ipi off label based on enlarged nodes in the lungs. The ulcerated melanoma is in his stomach and yes we are trying to get an answer on it bring resected. That is a great point about trying to get into a combo trial. I will ask today at our appt. I have never heard about kir. If a trial is offered at Moffitt do you have to travel to Florida?  Just entering into the clinical trial world. I know his prior ipi may disqualify him.  I feel like we are playing chess and we have to think 3-4 moves in advance. That's why this board is so helpful. 

        • April 30, 2014 at 7:25 pm
        Brendan
        Participant

        Hi Angela,

         

        Sorry to hear about your husband's recent developments.  I discovered I was stage IV 2 1/2 years ago  and II have been at Penn the entire time.  Last Novemebr two new mets were discovered; one in each lung.  I did not qualify for any of Penn's trials so I now fly to moffitt every other week for a PD-1 trial.  As part of the trial I must get all CT scans and infusions at Moffitt.  However, I am still able to have my brain MRIs at Penn (had one this morning!). 

         

        Good luck.

        Brendan

        • April 30, 2014 at 11:48 pm
        FayFighter
        Participant

        And thank you Brendan for explaining logistics around clinical trials at a distant site. 

        • April 30, 2014 at 11:48 pm
        FayFighter
        Participant

        And thank you Brendan for explaining logistics around clinical trials at a distant site. 

        • April 30, 2014 at 11:48 pm
        FayFighter
        Participant

        And thank you Brendan for explaining logistics around clinical trials at a distant site. 

        • April 30, 2014 at 7:25 pm
        Brendan
        Participant

        Hi Angela,

         

        Sorry to hear about your husband's recent developments.  I discovered I was stage IV 2 1/2 years ago  and II have been at Penn the entire time.  Last Novemebr two new mets were discovered; one in each lung.  I did not qualify for any of Penn's trials so I now fly to moffitt every other week for a PD-1 trial.  As part of the trial I must get all CT scans and infusions at Moffitt.  However, I am still able to have my brain MRIs at Penn (had one this morning!). 

         

        Good luck.

        Brendan

        • April 30, 2014 at 7:25 pm
        Brendan
        Participant

        Hi Angela,

         

        Sorry to hear about your husband's recent developments.  I discovered I was stage IV 2 1/2 years ago  and II have been at Penn the entire time.  Last Novemebr two new mets were discovered; one in each lung.  I did not qualify for any of Penn's trials so I now fly to moffitt every other week for a PD-1 trial.  As part of the trial I must get all CT scans and infusions at Moffitt.  However, I am still able to have my brain MRIs at Penn (had one this morning!). 

         

        Good luck.

        Brendan

        • April 30, 2014 at 5:56 pm
        FayFighter
        Participant

        I am sorry for now being more specific. He got the ipi off label based on enlarged nodes in the lungs. The ulcerated melanoma is in his stomach and yes we are trying to get an answer on it bring resected. That is a great point about trying to get into a combo trial. I will ask today at our appt. I have never heard about kir. If a trial is offered at Moffitt do you have to travel to Florida?  Just entering into the clinical trial world. I know his prior ipi may disqualify him.  I feel like we are playing chess and we have to think 3-4 moves in advance. That's why this board is so helpful. 

        • April 30, 2014 at 5:56 pm
        FayFighter
        Participant

        I am sorry for now being more specific. He got the ipi off label based on enlarged nodes in the lungs. The ulcerated melanoma is in his stomach and yes we are trying to get an answer on it bring resected. That is a great point about trying to get into a combo trial. I will ask today at our appt. I have never heard about kir. If a trial is offered at Moffitt do you have to travel to Florida?  Just entering into the clinical trial world. I know his prior ipi may disqualify him.  I feel like we are playing chess and we have to think 3-4 moves in advance. That's why this board is so helpful. 

        • April 30, 2014 at 11:46 pm
        FayFighter
        Participant

        Brian…thank you for responding to my post. I brought up the combo pd1 and KIR trial. We had chance to meet with the Oncologist.  It looks like he will qualify.  I had never heard of this trial until you mentioned. Thank you from the bottom of my heart. 

        • April 30, 2014 at 11:46 pm
        FayFighter
        Participant

        Brian…thank you for responding to my post. I brought up the combo pd1 and KIR trial. We had chance to meet with the Oncologist.  It looks like he will qualify.  I had never heard of this trial until you mentioned. Thank you from the bottom of my heart. 

        • May 1, 2014 at 2:10 pm
        BrianP
        Participant

        Angela,

        That is such great news!  I really hope it works out for you all.  I know I've seen someone else post who is on that trial but I can't find the post right now.  Not sure if it was on this site or the MIF site.  I'll look for it and if I find it I'll send it to you so maybe you can reach out to that person to see how they are doing.

        Brian

        • May 1, 2014 at 2:10 pm
        BrianP
        Participant

        Angela,

        That is such great news!  I really hope it works out for you all.  I know I've seen someone else post who is on that trial but I can't find the post right now.  Not sure if it was on this site or the MIF site.  I'll look for it and if I find it I'll send it to you so maybe you can reach out to that person to see how they are doing.

        Brian

        • May 1, 2014 at 2:18 pm
        BrianP
        Participant

        HA! I found it!  Angela, if you don't have a MIF account yet I recommend creating one there as well.  This site is more active but the MIF site is good also.  Best of luck.

        http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34932&hilit=kir

        • May 1, 2014 at 2:18 pm
        BrianP
        Participant

        HA! I found it!  Angela, if you don't have a MIF account yet I recommend creating one there as well.  This site is more active but the MIF site is good also.  Best of luck.

        http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34932&hilit=kir

        • May 1, 2014 at 6:17 pm
        FayFighter
        Participant

        Thx again Brian. I joined MIF just last night. 

        • May 1, 2014 at 6:17 pm
        FayFighter
        Participant

        Thx again Brian. I joined MIF just last night. 

        • May 1, 2014 at 6:17 pm
        FayFighter
        Participant

        Thx again Brian. I joined MIF just last night. 

        • May 1, 2014 at 2:18 pm
        BrianP
        Participant

        HA! I found it!  Angela, if you don't have a MIF account yet I recommend creating one there as well.  This site is more active but the MIF site is good also.  Best of luck.

        http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34932&hilit=kir

        • May 1, 2014 at 2:10 pm
        BrianP
        Participant

        Angela,

        That is such great news!  I really hope it works out for you all.  I know I've seen someone else post who is on that trial but I can't find the post right now.  Not sure if it was on this site or the MIF site.  I'll look for it and if I find it I'll send it to you so maybe you can reach out to that person to see how they are doing.

        Brian

        • April 30, 2014 at 11:46 pm
        FayFighter
        Participant

        Brian…thank you for responding to my post. I brought up the combo pd1 and KIR trial. We had chance to meet with the Oncologist.  It looks like he will qualify.  I had never heard of this trial until you mentioned. Thank you from the bottom of my heart. 

      • April 30, 2014 at 1:46 pm
      BrianP
      Participant

      Angela,

      Can you add a little clarification to your husband's case.  Did he get the ipi as part of the ipi vs. interferon trial.  I'm assuming he was NED when he received the ipi.  Was the lesion in the upper intestines biopsied when they did the endoscopy?  Can this new disease be resected and are you all considering that?  If it is resectable that is great but it does limit your treatment options but there are a few trials right now for adjuvant treatment.  It's hard to go wrong with one of the PD1 treatments.  If I was looking right now I think I'd try to finding a PD-1 combo trial but they are probably getting harder to find.  You might look for a PD1+kir (I think there's one at MSKCC) or PD1+TIL (I think Moffitt is about to start one of these).  You are in a great place for treatment so I'm sure you are in good hands. 

      Brian

      • April 30, 2014 at 1:46 pm
      BrianP
      Participant

      Angela,

      Can you add a little clarification to your husband's case.  Did he get the ipi as part of the ipi vs. interferon trial.  I'm assuming he was NED when he received the ipi.  Was the lesion in the upper intestines biopsied when they did the endoscopy?  Can this new disease be resected and are you all considering that?  If it is resectable that is great but it does limit your treatment options but there are a few trials right now for adjuvant treatment.  It's hard to go wrong with one of the PD1 treatments.  If I was looking right now I think I'd try to finding a PD-1 combo trial but they are probably getting harder to find.  You might look for a PD1+kir (I think there's one at MSKCC) or PD1+TIL (I think Moffitt is about to start one of these).  You are in a great place for treatment so I'm sure you are in good hands. 

      Brian

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