Liver mets
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Liver mets

› Forums › General Melanoma Community › Liver mets

  • Post
    • November 18, 2015 at 2:57 am
    Debbieamccoy
    Participant

    Talked to my  onc to day if my liver numbers don't get better and my liver doesn't decrease in size there's not much hope. I've only had 2 doses of the combo. My belly is still swollen. Buy no ascites . I'm exhausted from nine days in the hospital and exhausted and duds disappointed 

Viewing 8 reply threads
  • Replies
      • November 18, 2015 at 5:11 am
      AnitaLoree
      Participant

      Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

      • November 18, 2015 at 5:11 am
      AnitaLoree
      Participant

      Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

      • November 18, 2015 at 5:11 am
      AnitaLoree
      Participant

      Dear Debbie, I am so sorry that the ipi/nivo SE's have hit you so hard, so fast.  Hoping you are now in UofWA hospital and getting care from your mel oncologist and a good team. Good if this has maxed and your labs start coming down, down, you start feeling better, lots less scared. I'm rooting for you and for your docs to wisely treat you. Be strong. With caring, A.L.

      • November 18, 2015 at 4:21 pm
      Want2help
      Participant

      I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

      You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

      http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

       

      • November 18, 2015 at 4:21 pm
      Want2help
      Participant

      I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

      You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

      http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

       

        • November 18, 2015 at 5:50 pm
        Scooby123
        Participant

        Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

        thinking of you 

        scooby❤️

        • November 18, 2015 at 5:50 pm
        Scooby123
        Participant

        Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

        thinking of you 

        scooby❤️

        • November 18, 2015 at 9:08 pm
        Debbieamccoy
        Participant

        My dr said he will treat me as long as I want to get treated what ever that means 

        • November 18, 2015 at 9:08 pm
        Debbieamccoy
        Participant

        My dr said he will treat me as long as I want to get treated what ever that means 

        • November 19, 2015 at 1:21 pm
        Gwenmorgan
        Participant

        Any better?

        • November 19, 2015 at 1:21 pm
        Gwenmorgan
        Participant

        Any better?

        • November 19, 2015 at 1:21 pm
        Gwenmorgan
        Participant

        Any better?

        • November 18, 2015 at 9:08 pm
        Debbieamccoy
        Participant

        My dr said he will treat me as long as I want to get treated what ever that means 

        • November 18, 2015 at 5:50 pm
        Scooby123
        Participant

        Hi there  so sorry you are not getting much better with the combo, did yervoy not do nothing for your liver mets. Have you suggested they do another biopsy due to I did read some one say if not tested braf later you could devolope the braf gene . I so a second option and he suggested do another biopsy am not braf and have liver mets too..

        thinking of you 

        scooby❤️

      • November 18, 2015 at 4:21 pm
      Want2help
      Participant

      I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

      You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

      http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

       

      • November 20, 2015 at 9:35 pm
      AmandaLivingston
      Participant

      Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

      http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

      My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

       

      He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

       

      http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

      We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

      http://faculty.mdanderson.org/Sapna_Patel/

      We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

       

      Hang in there.

      • November 20, 2015 at 9:35 pm
      AmandaLivingston
      Participant

      Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

      http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

      My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

       

      He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

       

      http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

      We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

      http://faculty.mdanderson.org/Sapna_Patel/

      We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

       

      Hang in there.

      • November 20, 2015 at 9:35 pm
      AmandaLivingston
      Participant

      Please don't lost hope – my husband is stage IV and has liver mets (GNAQ postivie) as well and we know how stubborn those guys can be. We've been to hosptials all across the country and are leaving for UPMC in Pittsburgh for him to have a Isolate Hepatic Perfusion surgery on December 7. Google it. Dr. Pingpank is the only one who does it and he will review your scans remotely so you don't have to travel just for a consult. 

      http://www.upmc.com/media/experts/Pages/james-f-pingpank.aspx

      My husband is at 50% disease in his liver and we've been told by a number of docs at UCSF, MD Anderson, NCI that this is his best option.

       

      He also just heard about this Celldex therapy clinical trial out of LA (Dr. Hamid) that is showing promise in the liver. We're investigating this as we speak so don't have a ton more info. They are also doing the trial out of St. Mary's hospital in San Francisco. 

       

      http://www.theangelesclinic.org/Home/MeetOurTeam/Doctors/tabid/19273/Default.aspx

      We've also been in touch with Dr. Sapna Patel at MD Anderson and she has a clinical trial that's shown promise in the liver and is accepting patients.

      http://faculty.mdanderson.org/Sapna_Patel/

      We're investigating this all fast and furiously so I wish I had more data to share with you but look into these! 

       

      Hang in there.

Viewing 8 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics