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Update on Mom (Anorectal Mucosal Melanoma)
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Update on Mom (Anorectal Mucosal Melanoma)

› Forums › Mucosal Melanoma Community › Update on Mom (Anorectal Mucosal Melanoma)

  • Post
    • January 5, 2017 at 6:08 am
    Cindyco
    Participant

      My mom's latest CT and MRI show that the primary anorectal mass has gotten larger, one enlarged inguinal lymph node has also gotten larger, and there is a suspicious new 5mm nodule showing up in her lung. Needless to say, we are disappointed.

      Since she got one dose of ipi/nivo back on October 20, before needing to stop and get on steroids, we're assuming that dose either did nothing or was cancelled out by the steroids. Since the primary mass has gotten bigger, her doctor suggested radiation and going from there. He said that it would stop a lot of the bleeding and ease some of the discomfort. Can anyone share their experience regarding radiation of this area? We are curious about how many sessions of radiation, what dosages are normal, pain from radiation, recovery time, etc…

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    • Replies
        • January 7, 2017 at 3:31 pm
        debwray
        Participant

          Hi CindyCo,

          Sorry you have not had any replies. Sometimes we just don't have the answers or experience.  However, I'll chip in my two penny worth of thoughts…

          Did your Mums side effects with ipi Nivo resolve with steroids- can she have further doses of either the combo or nivo only ? Sometimes responses can be delayed – but she has only had one dose- so got to be worth asking ?

          Radiation plus immunotherapy can be good as damage via the radiotherapy to the tumour can lead to the abscopal effect-and helps the immunotherapy to work and identify what it needs to attack.

          Both treatments are good in their own wat but together can have a greater impact.

          Have heardthat radiation isgood for pain relief but can have side effects of fatigue.  As for dosages,sessions etc – that has got to be tailored to your Mum's circumstances- but it does sound like a good idea. You might get more information from searching for information on radiation for rectal or colon cancer as this is more common than melanoma in this area.

          This link http://www.cancerresearchuk.org/about-cancer/anal-cancer/treatment/radiotherapy/side-effects-radiotherapy  probably covers the basics

          Hopefully she is being treated by a melanoma specialist  who is good at judging and managing immunotherapy drugs ?

          Best wishes

          Deb

           

            • January 12, 2017 at 6:14 pm
            Cindyco
            Participant

              Thank you Deb for taking the time to respond!  She is being treated by Dr. Ribas at UCLA, and we are hoping that the radiation will reduce most of the pain.  I think she is definitely willing to deal with fatigue instead.  We see Dr. Ribas the day after radiation to discuss immunotherapy options, so I will definitely ask him about the abscopal effect! 

              • January 12, 2017 at 6:14 pm
              Cindyco
              Participant

                Thank you Deb for taking the time to respond!  She is being treated by Dr. Ribas at UCLA, and we are hoping that the radiation will reduce most of the pain.  I think she is definitely willing to deal with fatigue instead.  We see Dr. Ribas the day after radiation to discuss immunotherapy options, so I will definitely ask him about the abscopal effect! 

                • January 12, 2017 at 6:14 pm
                Cindyco
                Participant

                  Thank you Deb for taking the time to respond!  She is being treated by Dr. Ribas at UCLA, and we are hoping that the radiation will reduce most of the pain.  I think she is definitely willing to deal with fatigue instead.  We see Dr. Ribas the day after radiation to discuss immunotherapy options, so I will definitely ask him about the abscopal effect! 

                • January 7, 2017 at 3:31 pm
                debwray
                Participant

                  Hi CindyCo,

                  Sorry you have not had any replies. Sometimes we just don't have the answers or experience.  However, I'll chip in my two penny worth of thoughts…

                  Did your Mums side effects with ipi Nivo resolve with steroids- can she have further doses of either the combo or nivo only ? Sometimes responses can be delayed – but she has only had one dose- so got to be worth asking ?

                  Radiation plus immunotherapy can be good as damage via the radiotherapy to the tumour can lead to the abscopal effect-and helps the immunotherapy to work and identify what it needs to attack.

                  Both treatments are good in their own wat but together can have a greater impact.

                  Have heardthat radiation isgood for pain relief but can have side effects of fatigue.  As for dosages,sessions etc – that has got to be tailored to your Mum's circumstances- but it does sound like a good idea. You might get more information from searching for information on radiation for rectal or colon cancer as this is more common than melanoma in this area.

                  This link http://www.cancerresearchuk.org/about-cancer/anal-cancer/treatment/radiotherapy/side-effects-radiotherapy  probably covers the basics

                  Hopefully she is being treated by a melanoma specialist  who is good at judging and managing immunotherapy drugs ?

                  Best wishes

                  Deb

                   

                  • January 7, 2017 at 3:31 pm
                  debwray
                  Participant

                    Hi CindyCo,

                    Sorry you have not had any replies. Sometimes we just don't have the answers or experience.  However, I'll chip in my two penny worth of thoughts…

                    Did your Mums side effects with ipi Nivo resolve with steroids- can she have further doses of either the combo or nivo only ? Sometimes responses can be delayed – but she has only had one dose- so got to be worth asking ?

                    Radiation plus immunotherapy can be good as damage via the radiotherapy to the tumour can lead to the abscopal effect-and helps the immunotherapy to work and identify what it needs to attack.

                    Both treatments are good in their own wat but together can have a greater impact.

                    Have heardthat radiation isgood for pain relief but can have side effects of fatigue.  As for dosages,sessions etc – that has got to be tailored to your Mum's circumstances- but it does sound like a good idea. You might get more information from searching for information on radiation for rectal or colon cancer as this is more common than melanoma in this area.

                    This link http://www.cancerresearchuk.org/about-cancer/anal-cancer/treatment/radiotherapy/side-effects-radiotherapy  probably covers the basics

                    Hopefully she is being treated by a melanoma specialist  who is good at judging and managing immunotherapy drugs ?

                    Best wishes

                    Deb

                     

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