Mucosal Melanoma update

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

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

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

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….

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….

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….