Mom diagnosed with Stage IV Metatastic Melanoma
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Mom diagnosed with Stage IV Metatastic Melanoma

› Forums › General Melanoma Community › Mom diagnosed with Stage IV Metatastic Melanoma

  • Post
    • February 21, 2015 at 5:49 pm
    dmk252003
    Participant

    Hello

    My mom was diagnosed with Stage IV melanoma. She has tumors in her lungs, spine, adrenal gland, clavicle. Her oncologist is recommending Yervoy. I would like to get feedback from people who have gone through similiar situation. I appreciate it. Thanks, Donna

Viewing 8 reply threads
  • Replies
      • February 21, 2015 at 6:42 pm
      Gene_S
      Participant

      Hi Donna,

      My husband became Stage IV with tumors in his liver, lungs and an unresectable tumor on the back of his head pushing on the Cervical 1 or 2 spine (which would have left him a paraplegic if he had surgery) and some small sub q's on the scalp.

      He took Yervoy (Ipi) and GMCSF clinical trial and he has been NED for over 2 years.  If you would like to read more check out his profile.

      Judy (loving wife of Gene Stage IV and now NED)

      • February 21, 2015 at 6:42 pm
      Gene_S
      Participant

      Hi Donna,

      My husband became Stage IV with tumors in his liver, lungs and an unresectable tumor on the back of his head pushing on the Cervical 1 or 2 spine (which would have left him a paraplegic if he had surgery) and some small sub q's on the scalp.

      He took Yervoy (Ipi) and GMCSF clinical trial and he has been NED for over 2 years.  If you would like to read more check out his profile.

      Judy (loving wife of Gene Stage IV and now NED)

        • February 23, 2015 at 3:49 am
        dmk252003
        Participant

        Judy

        Thanks for your reply. My moms oncologist only recommended Yervoy. I will discuss with her doing a combination. Great to hear that your husband has been NED for over two years.

        • February 23, 2015 at 3:49 am
        dmk252003
        Participant

        Judy

        Thanks for your reply. My moms oncologist only recommended Yervoy. I will discuss with her doing a combination. Great to hear that your husband has been NED for over two years.

        • February 23, 2015 at 3:49 am
        dmk252003
        Participant

        Judy

        Thanks for your reply. My moms oncologist only recommended Yervoy. I will discuss with her doing a combination. Great to hear that your husband has been NED for over two years.

      • February 21, 2015 at 6:42 pm
      Gene_S
      Participant

      Hi Donna,

      My husband became Stage IV with tumors in his liver, lungs and an unresectable tumor on the back of his head pushing on the Cervical 1 or 2 spine (which would have left him a paraplegic if he had surgery) and some small sub q's on the scalp.

      He took Yervoy (Ipi) and GMCSF clinical trial and he has been NED for over 2 years.  If you would like to read more check out his profile.

      Judy (loving wife of Gene Stage IV and now NED)

      • February 21, 2015 at 8:14 pm
      arthurjedi007
      Participant

      I still have them in my spine clavicle and other places. For the FDA approved route then yes Yervoy is a first line treatment. Continuing on the fda route if she is B-RAF positive she can do the tafinlar mekinist combo pills and/or zelboraf. Otherwise the most recent fda approved is the pd1s opdivo and keytruda. I've done all these except opdivo. Currently on keytruda. There are also the older fda meds.

      There are also things like radiation and surgery but these only treat that area not all the tumors like the meds are supposed to.

      Or you can go to a clinical trial. I believe the best results so far are yervoy combined with opdivo. However the side affects can be severe. There are also many other trials all at clinicaltrials.gov.

      Or you can go to one of the big centers like msk in ny, mda in Houston, mofffitt in Tampa. Just to name a few.

      if I had to do this over I would get myself to one of the big centers and into a trial there. At the time I didn't know things like yervoy has a 15% response rate but in a trial with yervoy and opdivo is I think around a 40% response rate.

      So it's really how good of health your mom is in and what she wants to do.

      Artie

      • February 21, 2015 at 8:14 pm
      arthurjedi007
      Participant

      I still have them in my spine clavicle and other places. For the FDA approved route then yes Yervoy is a first line treatment. Continuing on the fda route if she is B-RAF positive she can do the tafinlar mekinist combo pills and/or zelboraf. Otherwise the most recent fda approved is the pd1s opdivo and keytruda. I've done all these except opdivo. Currently on keytruda. There are also the older fda meds.

      There are also things like radiation and surgery but these only treat that area not all the tumors like the meds are supposed to.

      Or you can go to a clinical trial. I believe the best results so far are yervoy combined with opdivo. However the side affects can be severe. There are also many other trials all at clinicaltrials.gov.

      Or you can go to one of the big centers like msk in ny, mda in Houston, mofffitt in Tampa. Just to name a few.

      if I had to do this over I would get myself to one of the big centers and into a trial there. At the time I didn't know things like yervoy has a 15% response rate but in a trial with yervoy and opdivo is I think around a 40% response rate.

      So it's really how good of health your mom is in and what she wants to do.

      Artie

        • February 22, 2015 at 1:04 am
        ncdaniel
        Participant

        Yervoy is a good choice and can have good results. But I highly reccomend you make sure the peRson treating is a melanoma specialist. Also my wife had a terrible experience with yervoy as the people administering it were new and inexperienced with what can turn into terrible side effects. This is a good choice but make very sure they are experienced and know how to handle cases where there are problems. Good luck with treatments.

        • February 22, 2015 at 1:04 am
        ncdaniel
        Participant

        Yervoy is a good choice and can have good results. But I highly reccomend you make sure the peRson treating is a melanoma specialist. Also my wife had a terrible experience with yervoy as the people administering it were new and inexperienced with what can turn into terrible side effects. This is a good choice but make very sure they are experienced and know how to handle cases where there are problems. Good luck with treatments.

        • February 22, 2015 at 2:55 am
        Jubes
        Participant

        I think the response rate of the Ipi /Nivo trial is more like 80% but maybe Celeste has more acurate figures.

        In any case I wish you great results and not too many side effects. Mine have been manageable so far.

        Anne-louise

        • February 22, 2015 at 2:55 am
        Jubes
        Participant

        I think the response rate of the Ipi /Nivo trial is more like 80% but maybe Celeste has more acurate figures.

        In any case I wish you great results and not too many side effects. Mine have been manageable so far.

        Anne-louise

        • February 22, 2015 at 2:55 am
        Jubes
        Participant

        I think the response rate of the Ipi /Nivo trial is more like 80% but maybe Celeste has more acurate figures.

        In any case I wish you great results and not too many side effects. Mine have been manageable so far.

        Anne-louise

        • February 23, 2015 at 4:06 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wife.

        • February 23, 2015 at 4:06 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wife.

        • February 23, 2015 at 4:10 am
        dmk252003
        Participant

        I just realized I posted my response to you instead of someone else. Any rate, thanks for your reply. I will look into more information on Yervoy and combination therapy. Take care

        • February 23, 2015 at 4:10 am
        dmk252003
        Participant

        I just realized I posted my response to you instead of someone else. Any rate, thanks for your reply. I will look into more information on Yervoy and combination therapy. Take care

        • February 23, 2015 at 4:10 am
        dmk252003
        Participant

        I just realized I posted my response to you instead of someone else. Any rate, thanks for your reply. I will look into more information on Yervoy and combination therapy. Take care

        • February 23, 2015 at 4:06 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wife.

        • February 23, 2015 at 4:11 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wif

        • February 23, 2015 at 4:11 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wif

        • February 23, 2015 at 4:11 am
        dmk252003
        Participant

        Thanks for your reply. Her oncologist is not a melanoma specialist but my siblings and I are currently looking into one. I am so scared of what the side effects will do to my mom. She already has so many health issues besides the cancer. All the best to your wif

        • February 22, 2015 at 1:04 am
        ncdaniel
        Participant

        Yervoy is a good choice and can have good results. But I highly reccomend you make sure the peRson treating is a melanoma specialist. Also my wife had a terrible experience with yervoy as the people administering it were new and inexperienced with what can turn into terrible side effects. This is a good choice but make very sure they are experienced and know how to handle cases where there are problems. Good luck with treatments.

        • February 23, 2015 at 3:59 am
        dmk252003
        Participant

        Artie

        Thanks for your reply. My mom is B-RAF negative. She did have a tumor removed at T12  in October along with radiation to her right sacrum area. Her oncologist is now recommending Yervoy. I will be asking her about Yervoy with Opdivo. As far as my moms health goes, she was recently admitted to the hospital for irreguar heart rate and high blood pressure. She is also anemic and has chronic kidney disease. I do worry about what Yervoy will do to her. Only could hope for the best.

        • February 23, 2015 at 3:59 am
        dmk252003
        Participant

        Artie

        Thanks for your reply. My mom is B-RAF negative. She did have a tumor removed at T12  in October along with radiation to her right sacrum area. Her oncologist is now recommending Yervoy. I will be asking her about Yervoy with Opdivo. As far as my moms health goes, she was recently admitted to the hospital for irreguar heart rate and high blood pressure. She is also anemic and has chronic kidney disease. I do worry about what Yervoy will do to her. Only could hope for the best.

        • February 23, 2015 at 3:59 am
        dmk252003
        Participant

        Artie

        Thanks for your reply. My mom is B-RAF negative. She did have a tumor removed at T12  in October along with radiation to her right sacrum area. Her oncologist is now recommending Yervoy. I will be asking her about Yervoy with Opdivo. As far as my moms health goes, she was recently admitted to the hospital for irreguar heart rate and high blood pressure. She is also anemic and has chronic kidney disease. I do worry about what Yervoy will do to her. Only could hope for the best.

      • February 21, 2015 at 8:14 pm
      arthurjedi007
      Participant

      I still have them in my spine clavicle and other places. For the FDA approved route then yes Yervoy is a first line treatment. Continuing on the fda route if she is B-RAF positive she can do the tafinlar mekinist combo pills and/or zelboraf. Otherwise the most recent fda approved is the pd1s opdivo and keytruda. I've done all these except opdivo. Currently on keytruda. There are also the older fda meds.

      There are also things like radiation and surgery but these only treat that area not all the tumors like the meds are supposed to.

      Or you can go to a clinical trial. I believe the best results so far are yervoy combined with opdivo. However the side affects can be severe. There are also many other trials all at clinicaltrials.gov.

      Or you can go to one of the big centers like msk in ny, mda in Houston, mofffitt in Tampa. Just to name a few.

      if I had to do this over I would get myself to one of the big centers and into a trial there. At the time I didn't know things like yervoy has a 15% response rate but in a trial with yervoy and opdivo is I think around a 40% response rate.

      So it's really how good of health your mom is in and what she wants to do.

      Artie

      • February 23, 2015 at 12:18 am
      Patina
      Participant
      In November of 2013 my Mom was diagnosed as stage IV. She had:

      6 tumors in her torso: liver, lungs, kidney, adrenal gland
      18 tumors were subcutaneous and on her scalp
      1 tumor one in a gland on her neck

      We tried to get her into the PD1 trials for Merck and BMS and were days away from it when the 3rd melanoma specialist looked at her MRI’s. The radiologist missed 3 brain tumors!

      She could not go into any trials and had gamma knife radiation on 12/09/13 for 8 brain mets (1 was missed) and Yervoy was started on 12/12/13. Combined the two have produced amazing results for her. I don’t know if this is a option for your Mom, but if it is you might look into it.

      While she ended up having 17 more brain mets treated on 4/15/14, she had colitis and only 3 infusions the thing she says that was going to kill her was thrush. She has had no cognitive issues and the last scan of her brain only showed 4 tumors. 21 were gone. There are none on her head or neck and the ones in her torso look like old disease or and really small.

      If you are not having her see a melanoma specialist find one.

      Good luck!

      • February 23, 2015 at 12:18 am
      Patina
      Participant
      In November of 2013 my Mom was diagnosed as stage IV. She had:

      6 tumors in her torso: liver, lungs, kidney, adrenal gland
      18 tumors were subcutaneous and on her scalp
      1 tumor one in a gland on her neck

      We tried to get her into the PD1 trials for Merck and BMS and were days away from it when the 3rd melanoma specialist looked at her MRI’s. The radiologist missed 3 brain tumors!

      She could not go into any trials and had gamma knife radiation on 12/09/13 for 8 brain mets (1 was missed) and Yervoy was started on 12/12/13. Combined the two have produced amazing results for her. I don’t know if this is a option for your Mom, but if it is you might look into it.

      While she ended up having 17 more brain mets treated on 4/15/14, she had colitis and only 3 infusions the thing she says that was going to kill her was thrush. She has had no cognitive issues and the last scan of her brain only showed 4 tumors. 21 were gone. There are none on her head or neck and the ones in her torso look like old disease or and really small.

      If you are not having her see a melanoma specialist find one.

      Good luck!

        • February 23, 2015 at 4:03 am
        dmk252003
        Participant

        Patina

        Thanks for your reply. I am sorry to hear that your mom has this horrible cancer as my mom does. I will look into combination therapy. Her current oncologist is not a melanoma specialist but I will also look into one. Wishing your mom all the best.

        • February 23, 2015 at 4:03 am
        dmk252003
        Participant

        Patina

        Thanks for your reply. I am sorry to hear that your mom has this horrible cancer as my mom does. I will look into combination therapy. Her current oncologist is not a melanoma specialist but I will also look into one. Wishing your mom all the best.

        • February 23, 2015 at 4:03 am
        dmk252003
        Participant

        Patina

        Thanks for your reply. I am sorry to hear that your mom has this horrible cancer as my mom does. I will look into combination therapy. Her current oncologist is not a melanoma specialist but I will also look into one. Wishing your mom all the best.

      • February 23, 2015 at 12:18 am
      Patina
      Participant
      In November of 2013 my Mom was diagnosed as stage IV. She had:

      6 tumors in her torso: liver, lungs, kidney, adrenal gland
      18 tumors were subcutaneous and on her scalp
      1 tumor one in a gland on her neck

      We tried to get her into the PD1 trials for Merck and BMS and were days away from it when the 3rd melanoma specialist looked at her MRI’s. The radiologist missed 3 brain tumors!

      She could not go into any trials and had gamma knife radiation on 12/09/13 for 8 brain mets (1 was missed) and Yervoy was started on 12/12/13. Combined the two have produced amazing results for her. I don’t know if this is a option for your Mom, but if it is you might look into it.

      While she ended up having 17 more brain mets treated on 4/15/14, she had colitis and only 3 infusions the thing she says that was going to kill her was thrush. She has had no cognitive issues and the last scan of her brain only showed 4 tumors. 21 were gone. There are none on her head or neck and the ones in her torso look like old disease or and really small.

      If you are not having her see a melanoma specialist find one.

      Good luck!

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