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Mucosal Melanoma update

Forums Mucosal Melanoma Community Mucosal Melanoma update

  • Post
    chrisholder
    Participant

      I've posted a few times, but many may not remember… Diagnosed with mm in right max. sinus in May of this year, started ipi/nivo course in June but knocked out of trial after two infusions with hepatitis, blown thyroid and long hospitalization.  Once recovered from side effects started Pembrolizumab (Keytruda) in Sept which has kept tumor confined to sinus – and no mets so far.  But since the tumor is still growing I will start aggressive radiation next week for 7 weeks while continuing Pembro to retain its benefits and to possibly gain the Rad-Vax effect (synergistic effect of dying cells being transformed by Pembro into a 'vaccine' against further cancer cell growth).  Likely will lose the sight in one eye where the tumor is encroaching, but hopefully will drastically reduce tumor size.  As many of you more experienced than I know, the side effects of the radiation will be very difficult and some likely permanent.  Would be grateful to hear from face/sinus radiation veterans about how you dealt with sores/burning/loss of salivary/loss of appetite, etc.  Thanks!  Will update as I can.  Chris

    Viewing 5 reply threads
    • Replies
        jyc
        Participant

          Hi Chris, good to hear your treatment is keeping things in place.  To share, my father had radiation to his nasal sinus area and right neck back in 2007.  During the 6 weeks of treatment he would describe the feeling of a burning sensation and smell that came from within and he had a lot of fatigue.  After his treatments, his skin did look a little sunburned too.  The doctors recommended Biotene for mouth washing to ease the sores and prescribed a compounded medication that contained lidocaine that could be ingested in case the pain got worse.  For a while his taste buds were out of whack.  Even the smallest amount of pepper would taste like a jalepeno.  Once we found out the triggers we tried our best to avoid heavily seasoned foods.  Chicken soup seemed to work best.  His taste eventually did mostly return after some time.  Weight loss will happen but we tried to minimize it by filling him with nutritious things like homemade soup or juice (pasteurized in case of lowered immunity can't tolerate fresh) or anything that's easy to ingest.  Prior to the radiation, I'm sure the doctors will dicuss with you, is to get a comprehensive dental evaluation and get the dental work done prior to radiation.  The radiation could affect your blood vessels in your face and jaw region and reduce its ability to supply ample blood supply to your teeth.  To this day, dental procedures must be done with extra caution and can't have any extractions because of complications from healing.  The doctors recommend that he use a fluoride rich toothpaste and mouthwash going forward to help maintain dental health so he can avoid dental work.  Good luck!

          J

            chrisholder
            Participant

              Dear J,

              Excellent – thanks so much for your very helpful and specific suggestions!  Chris

              chrisholder
              Participant

                Dear J,

                Excellent – thanks so much for your very helpful and specific suggestions!  Chris

                chrisholder
                Participant

                  Dear J,

                  Excellent – thanks so much for your very helpful and specific suggestions!  Chris

                jyc
                Participant

                  Hi Chris, good to hear your treatment is keeping things in place.  To share, my father had radiation to his nasal sinus area and right neck back in 2007.  During the 6 weeks of treatment he would describe the feeling of a burning sensation and smell that came from within and he had a lot of fatigue.  After his treatments, his skin did look a little sunburned too.  The doctors recommended Biotene for mouth washing to ease the sores and prescribed a compounded medication that contained lidocaine that could be ingested in case the pain got worse.  For a while his taste buds were out of whack.  Even the smallest amount of pepper would taste like a jalepeno.  Once we found out the triggers we tried our best to avoid heavily seasoned foods.  Chicken soup seemed to work best.  His taste eventually did mostly return after some time.  Weight loss will happen but we tried to minimize it by filling him with nutritious things like homemade soup or juice (pasteurized in case of lowered immunity can't tolerate fresh) or anything that's easy to ingest.  Prior to the radiation, I'm sure the doctors will dicuss with you, is to get a comprehensive dental evaluation and get the dental work done prior to radiation.  The radiation could affect your blood vessels in your face and jaw region and reduce its ability to supply ample blood supply to your teeth.  To this day, dental procedures must be done with extra caution and can't have any extractions because of complications from healing.  The doctors recommend that he use a fluoride rich toothpaste and mouthwash going forward to help maintain dental health so he can avoid dental work.  Good luck!

                  J

                  jyc
                  Participant

                    Hi Chris, good to hear your treatment is keeping things in place.  To share, my father had radiation to his nasal sinus area and right neck back in 2007.  During the 6 weeks of treatment he would describe the feeling of a burning sensation and smell that came from within and he had a lot of fatigue.  After his treatments, his skin did look a little sunburned too.  The doctors recommended Biotene for mouth washing to ease the sores and prescribed a compounded medication that contained lidocaine that could be ingested in case the pain got worse.  For a while his taste buds were out of whack.  Even the smallest amount of pepper would taste like a jalepeno.  Once we found out the triggers we tried our best to avoid heavily seasoned foods.  Chicken soup seemed to work best.  His taste eventually did mostly return after some time.  Weight loss will happen but we tried to minimize it by filling him with nutritious things like homemade soup or juice (pasteurized in case of lowered immunity can't tolerate fresh) or anything that's easy to ingest.  Prior to the radiation, I'm sure the doctors will dicuss with you, is to get a comprehensive dental evaluation and get the dental work done prior to radiation.  The radiation could affect your blood vessels in your face and jaw region and reduce its ability to supply ample blood supply to your teeth.  To this day, dental procedures must be done with extra caution and can't have any extractions because of complications from healing.  The doctors recommend that he use a fluoride rich toothpaste and mouthwash going forward to help maintain dental health so he can avoid dental work.  Good luck!

                    J

                    tbh1835
                    Participant

                      Chris, my story – 

                      I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

                      I handled it all quite well, and was NED since last spring, living life pretty normally.

                      Radiation wasn't bad at all, I think because of proton beam technology.

                      But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

                      Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

                       

                      By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

                        chrisholder
                        Participant

                          Hi, TBH1835,

                          Thanks so much for your response and your story.  I am so very sorry to read of your recent recurrance and your Christmas night surgery – how hard this must be for you and your family after having been more than a year NED.  Suggestions?   Lordy, I'm a total novice and, unike you, chose not to have the extensive surgery/reconstruction/radiation/ chemo at first.  Immunotherapy is clearly having some positive effect on me, but the tumor and mm in general is very agressive.  Pressure and pain is increasing,  which is why I'm starting radiation now.  Yes, indeed, I would like to know of the fb groups for mm & even more would like to communicate w/ you directly if you are willing ([email protected]) .  Though I do not live in Boston, I'm in treatment at Dana Farber.  Chris

                          chrisholder
                          Participant

                            Hi, TBH1835,

                            Thanks so much for your response and your story.  I am so very sorry to read of your recent recurrance and your Christmas night surgery – how hard this must be for you and your family after having been more than a year NED.  Suggestions?   Lordy, I'm a total novice and, unike you, chose not to have the extensive surgery/reconstruction/radiation/ chemo at first.  Immunotherapy is clearly having some positive effect on me, but the tumor and mm in general is very agressive.  Pressure and pain is increasing,  which is why I'm starting radiation now.  Yes, indeed, I would like to know of the fb groups for mm & even more would like to communicate w/ you directly if you are willing ([email protected]) .  Though I do not live in Boston, I'm in treatment at Dana Farber.  Chris

                            chrisholder
                            Participant

                              Hi, TBH1835,

                              Thanks so much for your response and your story.  I am so very sorry to read of your recent recurrance and your Christmas night surgery – how hard this must be for you and your family after having been more than a year NED.  Suggestions?   Lordy, I'm a total novice and, unike you, chose not to have the extensive surgery/reconstruction/radiation/ chemo at first.  Immunotherapy is clearly having some positive effect on me, but the tumor and mm in general is very agressive.  Pressure and pain is increasing,  which is why I'm starting radiation now.  Yes, indeed, I would like to know of the fb groups for mm & even more would like to communicate w/ you directly if you are willing ([email protected]) .  Though I do not live in Boston, I'm in treatment at Dana Farber.  Chris

                            tbh1835
                            Participant

                              Chris, my story – 

                              I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

                              I handled it all quite well, and was NED since last spring, living life pretty normally.

                              Radiation wasn't bad at all, I think because of proton beam technology.

                              But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

                              Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

                               

                              By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

                              tbh1835
                              Participant

                                Chris, my story – 

                                I was diagnosed with MM in May '14, right sinus also.  One major surgery and two minor follow ups, followed by 33 rounds of proton beam radiation (highly accurate) at Mass General.  Then an interesting course of chemotherapy, cisplatin and temozolmide – 6 rounds.  A Beijing study showed it  being pretty effective.

                                I handled it all quite well, and was NED since last spring, living life pretty normally.

                                Radiation wasn't bad at all, I think because of proton beam technology.

                                But quarterly scans showed an enlarged lymph node (retropertirenum) a couple weeks ago, and before I could get the biopsy done, I developed pretty good headaches, and Christmas night brought me to Mass General ED, I had a brain MRI scan, and immediate surgery to remove the brain met.

                                Next week I will start to develop my plan with my docs.   IPI/Nivo is one of the options for sure, as is Keytruda.  Any advice??

                                 

                                By the way, there are Facebook sites for MM.   I can invite/introduce you to a couple….

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