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msitz

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      msitz
      Participant

      Always have hope.

      My father had multple bowel and lung metastases and had a complete response to Keytruda. Make sure that you are seeing a melanoma specialist. See the link below for my dad's story. My profile has more detail. It was a difficult journey, but he had a very large tumor burden (tumours as large as 8+cm) and a perforated bowel. He is now cancer free.

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/march-2015-stage-4-diagnosis

      All the best,

      Msitz

      msitz
      Participant

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/stage-4-diagnosis-positive

      This is the initial post with more details of how extensive this all was.

      All the best to everyone.

      msitz
      Participant

      Hi Josh,

      My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

      My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

      – msitz

      msitz
      Participant

      Hi Josh,

      My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

      My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

      – msitz

      msitz
      Participant

      Hi Josh,

      My dad had 2 subcutaneous tumours. One was removed for TIL but he had the other when he started on Keytruda. It was a couple of centimeters and was not at all painful prior to beginning treatment. It is hard to remember the exact timeline of events, but after he started Keytruda it swelled up and got very hard and painful. It then shrunk entirely (within several weeks?) and is now gone.

      My dad has been on Keytruda since March 2015 and has had an almost complete response. His last few tumours continue to shrink. He has metastatic melanoma of unknown primary and had a very high tumour burden with lung, bowel and brain metastases at diagnosis (and tumours up to 7-8cm). Next week will be 19 months since his diagnosis when he was given a prognosis of 2 months. He is back at work full time and you would never know he has cancer. There is hope!!

      – msitz

      msitz
      Participant

      My dads LDH has fluctuated while on Keytruda. It was not elevated before he started the drug despite having tumours as large as 8cm. LDH is a marker of cell turnover so I am not sure how useful a marker it is for someone clearly responding to Keytruda who is having their cells attacked by the immune system. This would be a good question for your oncologist. One might even think that elevation in LDH shows that cells are being destroyed which would be a good thing. For reference, my dad is also stage 4 with tumours in his bowel, lungs, lymph nodes and brain. We thought we were going to lose him in April but his tumour burden is down 70% since starting Keytruda with some large masses (4-5cm) entirely gone. 

      -msitz

      msitz
      Participant

      My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

      He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

      His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

       

       

       

      msitz
      Participant

      My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

      He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

      His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

       

       

       

      msitz
      Participant

      My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

      He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

      His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

       

       

       

      msitz
      Participant

      My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.

      -msitz

      msitz
      Participant

      My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.

      -msitz

      msitz
      Participant

      My dad was diagnosed in March of 2015 with a very high tumour burden and widely metastatic disease (brain, lungs, bowel, lymph nodes). He had multiple tumours larger than 8cm and was very sick at presentation (the story is available in my previous posts). He has been on Keytruda since the end of March of 2015 with about an 80% response and all remaining lesions continue to shrink. His quality of life is outstanding and you would never know that he has stage 4 melanoma.

      -msitz

      msitz
      Participant

      Immunotherapy may cause tumours to grow before they shrink. My father's initial CT scan showed "significant disease progression". It took some time before the tumours started to shrink. Wait until you have spoken to your oncologist before making any drastic decisions. My father was given a "grave" prognosis by an ER doctor in April and is currently doing excellently on Keytruda living a normal quality of life with his tumours 70% gone. The treatment of melanoma is evolving so rapidly that there is no way for non-melanoma specialists to keep up with it.

      – msitz

      msitz
      Participant

      Immunotherapy may cause tumours to grow before they shrink. My father's initial CT scan showed "significant disease progression". It took some time before the tumours started to shrink. Wait until you have spoken to your oncologist before making any drastic decisions. My father was given a "grave" prognosis by an ER doctor in April and is currently doing excellently on Keytruda living a normal quality of life with his tumours 70% gone. The treatment of melanoma is evolving so rapidly that there is no way for non-melanoma specialists to keep up with it.

      – msitz

      msitz
      Participant

      Immunotherapy may cause tumours to grow before they shrink. My father's initial CT scan showed "significant disease progression". It took some time before the tumours started to shrink. Wait until you have spoken to your oncologist before making any drastic decisions. My father was given a "grave" prognosis by an ER doctor in April and is currently doing excellently on Keytruda living a normal quality of life with his tumours 70% gone. The treatment of melanoma is evolving so rapidly that there is no way for non-melanoma specialists to keep up with it.

      – msitz

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