Nasal Mucosal Melanoma

Marcus, I love your attitude! Keep it up!

~Hazel

Marcus, I love your attitude! Keep it up!

~Hazel

Marcus, I love your attitude! Keep it up!

~Hazel

Sorry that you are now a member of this forum. Great bunch of people who will offer advise & opinions .Keep your PMA (positive mind attitude) for it is a major weapon against melanoma. Keep us updated on your treatment .Beat the Beast. Al

Sorry that you are now a member of this forum. Great bunch of people who will offer advise & opinions .Keep your PMA (positive mind attitude) for it is a major weapon against melanoma. Keep us updated on your treatment .Beat the Beast. Al

Sorry that you are now a member of this forum. Great bunch of people who will offer advise & opinions .Keep your PMA (positive mind attitude) for it is a major weapon against melanoma. Keep us updated on your treatment .Beat the Beast. Al

Hiya Marcus, your story sounds a whole lot like my father's.  His cancer was discovered after a nosebleed and nasal blockage too back in 2007 by his ENT.  He had follow up consultation and surgery at MDAnderson to get clean margins and also to remove lymphnodes after one started to swell soon after his first surgery.  He too received an aggressive course of radiation to his nose and neck area following his surgery.  We've essentially been in an endless cycle of monitoring ever since at MDAnderson going from visits every 2 months, 4 months and 6 months for the last 6 years.  However in March this year we had a setback and discovered a new local tumor in his nose after getting a checkup for what we thought was seasonal dry nose issues.  We went back to MDAnderson immediately, got more scans, got more surgery, more clear margins and are starting the monitoring process again back at every 2 months.  The surgeon thinks the tumor was caught very early. The clinical oncologist called this a local recurrence and is recommending a "watch and wait" strategy since the tumor was resected.  Back to basics I call it.  Be vigilant and aware of the warning signs.

Hiya Marcus, your story sounds a whole lot like my father's.  His cancer was discovered after a nosebleed and nasal blockage too back in 2007 by his ENT.  He had follow up consultation and surgery at MDAnderson to get clean margins and also to remove lymphnodes after one started to swell soon after his first surgery.  He too received an aggressive course of radiation to his nose and neck area following his surgery.  We've essentially been in an endless cycle of monitoring ever since at MDAnderson going from visits every 2 months, 4 months and 6 months for the last 6 years.  However in March this year we had a setback and discovered a new local tumor in his nose after getting a checkup for what we thought was seasonal dry nose issues.  We went back to MDAnderson immediately, got more scans, got more surgery, more clear margins and are starting the monitoring process again back at every 2 months.  The surgeon thinks the tumor was caught very early. The clinical oncologist called this a local recurrence and is recommending a "watch and wait" strategy since the tumor was resected.  Back to basics I call it.  Be vigilant and aware of the warning signs.

Hiya Marcus, your story sounds a whole lot like my father's.  His cancer was discovered after a nosebleed and nasal blockage too back in 2007 by his ENT.  He had follow up consultation and surgery at MDAnderson to get clean margins and also to remove lymphnodes after one started to swell soon after his first surgery.  He too received an aggressive course of radiation to his nose and neck area following his surgery.  We've essentially been in an endless cycle of monitoring ever since at MDAnderson going from visits every 2 months, 4 months and 6 months for the last 6 years.  However in March this year we had a setback and discovered a new local tumor in his nose after getting a checkup for what we thought was seasonal dry nose issues.  We went back to MDAnderson immediately, got more scans, got more surgery, more clear margins and are starting the monitoring process again back at every 2 months.  The surgeon thinks the tumor was caught very early. The clinical oncologist called this a local recurrence and is recommending a "watch and wait" strategy since the tumor was resected.  Back to basics I call it.  Be vigilant and aware of the warning signs.

Aloha from HI as well.  I live in Hilo.

Hope all goes well and you are in the 25% club.  Nasal / mucosal mel is rarer so it may take a while before you meet others in a similar situation as you.  

Was your mass tested for C-KIT mutaions?  More common with mucosal mel and why it may not respond as well to some of the drugs you will see commonly posted about.  There are some C-KIT pathway blockers / inhibitors that work better for C-KIT mutations, anti PD1 or anti PDL1 drugs, and Ipi will work by unleashing your immune system and are good cards to have in your back pocket if needed.

Who is your onc there?  I see Dr. Palalay & Morita.

I am 3 years NED from stage IV mel.  I was originally diagnosed as IIA in 2002.

Just remember, even though you live on a rock in the middle of the Pacific, you have access to great medical care, even in HI.  I underwent my lung VATS surgery and IL-2 at Queen's.  I am soooo happy I was able to be treated at home, but was willing to travel if needed.

Best of luck, kick Mel's A$$.

Aloha from HI as well.  I live in Hilo.

Hope all goes well and you are in the 25% club.  Nasal / mucosal mel is rarer so it may take a while before you meet others in a similar situation as you.  

Was your mass tested for C-KIT mutaions?  More common with mucosal mel and why it may not respond as well to some of the drugs you will see commonly posted about.  There are some C-KIT pathway blockers / inhibitors that work better for C-KIT mutations, anti PD1 or anti PDL1 drugs, and Ipi will work by unleashing your immune system and are good cards to have in your back pocket if needed.

Who is your onc there?  I see Dr. Palalay & Morita.

I am 3 years NED from stage IV mel.  I was originally diagnosed as IIA in 2002.

Just remember, even though you live on a rock in the middle of the Pacific, you have access to great medical care, even in HI.  I underwent my lung VATS surgery and IL-2 at Queen's.  I am soooo happy I was able to be treated at home, but was willing to travel if needed.

Best of luck, kick Mel's A$$.

Aloha from HI as well.  I live in Hilo.

Hope all goes well and you are in the 25% club.  Nasal / mucosal mel is rarer so it may take a while before you meet others in a similar situation as you.  

Was your mass tested for C-KIT mutaions?  More common with mucosal mel and why it may not respond as well to some of the drugs you will see commonly posted about.  There are some C-KIT pathway blockers / inhibitors that work better for C-KIT mutations, anti PD1 or anti PDL1 drugs, and Ipi will work by unleashing your immune system and are good cards to have in your back pocket if needed.

Who is your onc there?  I see Dr. Palalay & Morita.

I am 3 years NED from stage IV mel.  I was originally diagnosed as IIA in 2002.

Just remember, even though you live on a rock in the middle of the Pacific, you have access to great medical care, even in HI.  I underwent my lung VATS surgery and IL-2 at Queen's.  I am soooo happy I was able to be treated at home, but was willing to travel if needed.

Best of luck, kick Mel's A$$.

I am also newly diagnosed and looking for others to share and learn with.  Looks like we are in this thing alone as there is so little to go by.  Let me know how your treatment goes and what other options your docs come up with and I wll share my info with you as well.  Good luck and when we hit five years we need to PARTY!!!

Your place or mine!

I am also newly diagnosed and looking for others to share and learn with.  Looks like we are in this thing alone as there is so little to go by.  Let me know how your treatment goes and what other options your docs come up with and I wll share my info with you as well.  Good luck and when we hit five years we need to PARTY!!!

Your place or mine!

I am also newly diagnosed and looking for others to share and learn with.  Looks like we are in this thing alone as there is so little to go by.  Let me know how your treatment goes and what other options your docs come up with and I wll share my info with you as well.  Good luck and when we hit five years we need to PARTY!!!

Your place or mine!

I love your attitude too! My son has another rare melanoma (oral, tongue) with similar stats…and he is almost 4 years NED!

I checked out your blog, cute family (i have 3 boys too)

Hang in there!!

Becky

I love your attitude too! My son has another rare melanoma (oral, tongue) with similar stats…and he is almost 4 years NED!

I checked out your blog, cute family (i have 3 boys too)

Hang in there!!

Becky

I love your attitude too! My son has another rare melanoma (oral, tongue) with similar stats…and he is almost 4 years NED!

I checked out your blog, cute family (i have 3 boys too)

Hang in there!!

Becky