Mli0709
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Mli0709

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      • August 16, 2016 at 10:13 pm
      Mli0709
      Participant

      Hi Mat,

      In a similar situation. My mom tried chemo as last line but side effects were too much so they discountinued. Benefits on staying on it just weren't there. We've seen 2 oncologist so far and best they could offer is palliative care. I'm trying to look into clinical trials but I am overwhelmed bc it's so much out there and don't know where to start. She also has an autoimmune disease already (psoriasis) which excludes her from a lot of trials. I just don't know what else to do. Can't think of anything else. I want to keep looking and trying and praying but I'm so discouraged at this point. 

       

      Its so painful even writing this. 

       

      Maria

      • August 16, 2016 at 10:13 pm
      Mli0709
      Participant

      Hi Mat,

      In a similar situation. My mom tried chemo as last line but side effects were too much so they discountinued. Benefits on staying on it just weren't there. We've seen 2 oncologist so far and best they could offer is palliative care. I'm trying to look into clinical trials but I am overwhelmed bc it's so much out there and don't know where to start. She also has an autoimmune disease already (psoriasis) which excludes her from a lot of trials. I just don't know what else to do. Can't think of anything else. I want to keep looking and trying and praying but I'm so discouraged at this point. 

       

      Its so painful even writing this. 

       

      Maria

      • August 16, 2016 at 10:13 pm
      Mli0709
      Participant

      Hi Mat,

      In a similar situation. My mom tried chemo as last line but side effects were too much so they discountinued. Benefits on staying on it just weren't there. We've seen 2 oncologist so far and best they could offer is palliative care. I'm trying to look into clinical trials but I am overwhelmed bc it's so much out there and don't know where to start. She also has an autoimmune disease already (psoriasis) which excludes her from a lot of trials. I just don't know what else to do. Can't think of anything else. I want to keep looking and trying and praying but I'm so discouraged at this point. 

       

      Its so painful even writing this. 

       

      Maria

      • August 15, 2016 at 6:13 pm
      Mli0709
      Participant

      have you tried getting second opinion? Are you being followed by a specialist?

      • August 15, 2016 at 6:13 pm
      Mli0709
      Participant

      have you tried getting second opinion? Are you being followed by a specialist?

      • August 15, 2016 at 6:13 pm
      Mli0709
      Participant

      have you tried getting second opinion? Are you being followed by a specialist?

      • August 15, 2016 at 7:55 pm
      Mli0709
      Participant

      Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.

       

      Thanks,

      Maria

      • August 15, 2016 at 7:55 pm
      Mli0709
      Participant

      Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.

       

      Thanks,

      Maria

      • August 15, 2016 at 7:55 pm
      Mli0709
      Participant

      Hi Paul, can you share more about your experience? I'm just very curious to know. My mom had stage 3c mucosal melanoma on her vulva so surgery was not an option. She was started on ipi/nevo but had to d/c due to severe rash (she has psoriasis) so they dropped the ipi kept her on nevo. Tumor kept growing so they gave her 6 weeks radiation to shrink the tumor down for the pain (she was on heavy opiods and could barely sit down)….the tumor shrunk completely but later scans showed mats to her lungs and back. They stopped nevo (she got 6 treatments) because she said she failed on it and then recommended chemo. She got 2 cycles of chemo (dacarbazine/cisplastin/vinblastine) but could not tolorate weakness and tumors didn't shrink in follow up scan. I'm just interested to know why they didn't consider keytruda as an option for her. I'm not too familiar with the drug. Is it in the same class as nevo? do you know what the differences are? They told my mom that she ran out of options as well at this point but we are seeking second opinion.

       

      Thanks,

      Maria

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