H.D.W.

Mat –  Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.

As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically"  removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell.  In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma"  used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that  my  primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).

Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal.  I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.

I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son.  The support of family, friends, and our church.

Congratulations!

Dave

Mat –  Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.

As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically"  removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell.  In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma"  used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that  my  primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).

Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal.  I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.

I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son.  The support of family, friends, and our church.

Congratulations!

Dave

Mat –  Thank you for your post. You are an encouragement to me and, I'm sure, many more of us dealing with Melanoma.

As for me, I've been dealing with skin cancer for more than 12 years. I had over 15 "surgically"  removed, dozens of biopsies, and hundreds burned. All of those were supposedly Basal or Squamous Cell.  In January I felt a small lump just in front of my ear, nothing on the surface, to me it felt like an inflamed lymph node. Bottom line, March 19th I heard "Metastatic Melanoma"  used to describe my condition. No primary tumor was found. The surgeon and Melanoma Specialist both said that  my  primary was probably one of three prior surgeries and was misdiagnosed (those were above the sentinel lymph node where we discovered it).

Fortunately, my PET CT and brain scans were clear. In April I had surgery to remove my Parotid Gland, along with a Radical Neck Dissection for Lymph node removal.  I've recently started a Drug Study and was randomized to Yervoy and recently received my first infusion.

I too have learned what I call my "new normal" which includes the medical aspects and an appreciation of life and people. I too am grateful for simple things, time with family and friends, a fishing trip with my son.  The support of family, friends, and our church.

Congratulations!

Dave

I'm stage IIIb/c (unknown primary), I discovered a lump that ended up being a tumor in a lymph node in my Parotid Gland.  It was completely removed.  The surgeon told me right after surgery, "you are tumor free but you are not melanoma free."  I am now in a Clinical Trial and am receiving Yervoy.  

My best advice is to consult with a Melanoma Expert at a major cancer treatment center and make a decision after that.  I'm fortunate, at my first visit with my local oncologist  told that he was referring me to UCLA.  His statement was that anything he could offer me wouldn't really change the outcome.  The Radiologist I saw locally was more than happy to give me radiation.  When I asked how effective radiation is on Melanoma he wouldn't really answer the question.  He gave me a stack of articles to read, the most recent was from 2008.. I decided he wasn't the radiologist for me.

(An additional consideration for me was that radiation to my parotid area would have killed all of my tastebuds and destroyed the other parotid gland.  The results would have been the destruction of most, if not all of my teeth.  He even wrote a referral to an oncological dentist so we could prepare.)

I found the lump in mid January, 2014.  Diagnosed as Metastaticc Melanoma on March 19th, initial surgery on March 27th to confirm diagnosis, surgery at UCLA on April 22nd, started Yervoy in July 2014. So far all scans are clear and side effects minimal.  

God bless

I'm stage IIIb/c (unknown primary), I discovered a lump that ended up being a tumor in a lymph node in my Parotid Gland.  It was completely removed.  The surgeon told me right after surgery, "you are tumor free but you are not melanoma free."  I am now in a Clinical Trial and am receiving Yervoy.  

My best advice is to consult with a Melanoma Expert at a major cancer treatment center and make a decision after that.  I'm fortunate, at my first visit with my local oncologist  told that he was referring me to UCLA.  His statement was that anything he could offer me wouldn't really change the outcome.  The Radiologist I saw locally was more than happy to give me radiation.  When I asked how effective radiation is on Melanoma he wouldn't really answer the question.  He gave me a stack of articles to read, the most recent was from 2008.. I decided he wasn't the radiologist for me.

(An additional consideration for me was that radiation to my parotid area would have killed all of my tastebuds and destroyed the other parotid gland.  The results would have been the destruction of most, if not all of my teeth.  He even wrote a referral to an oncological dentist so we could prepare.)

I found the lump in mid January, 2014.  Diagnosed as Metastaticc Melanoma on March 19th, initial surgery on March 27th to confirm diagnosis, surgery at UCLA on April 22nd, started Yervoy in July 2014. So far all scans are clear and side effects minimal.  

God bless

I'm stage IIIb/c (unknown primary), I discovered a lump that ended up being a tumor in a lymph node in my Parotid Gland.  It was completely removed.  The surgeon told me right after surgery, "you are tumor free but you are not melanoma free."  I am now in a Clinical Trial and am receiving Yervoy.  

My best advice is to consult with a Melanoma Expert at a major cancer treatment center and make a decision after that.  I'm fortunate, at my first visit with my local oncologist  told that he was referring me to UCLA.  His statement was that anything he could offer me wouldn't really change the outcome.  The Radiologist I saw locally was more than happy to give me radiation.  When I asked how effective radiation is on Melanoma he wouldn't really answer the question.  He gave me a stack of articles to read, the most recent was from 2008.. I decided he wasn't the radiologist for me.

(An additional consideration for me was that radiation to my parotid area would have killed all of my tastebuds and destroyed the other parotid gland.  The results would have been the destruction of most, if not all of my teeth.  He even wrote a referral to an oncological dentist so we could prepare.)

I found the lump in mid January, 2014.  Diagnosed as Metastaticc Melanoma on March 19th, initial surgery on March 27th to confirm diagnosis, surgery at UCLA on April 22nd, started Yervoy in July 2014. So far all scans are clear and side effects minimal.  

God bless

Chris, I'll be hoping and praying all goes well for you. I'm stage IIIC, BRAF pos., with no known primary.  I received my 2nd dose of Yervoy last Friday.  Hang in there!

David

Chris, I'll be hoping and praying all goes well for you. I'm stage IIIC, BRAF pos., with no known primary.  I received my 2nd dose of Yervoy last Friday.  Hang in there!

David

Chris, I'll be hoping and praying all goes well for you. I'm stage IIIC, BRAF pos., with no known primary.  I received my 2nd dose of Yervoy last Friday.  Hang in there!

David

Melanoma does indeed suck! If your MD is not a Melanoma Specialist ask him/her why they don't refer you to one! I have a very limited HMO and as soon as my diagnosis was confirmed all of my "in-network" doctors informed the insurance company that a major cancer center, with world renowned surgeons and melanoma specialists, should be taking care of me. Get the "local" physicians to convince the insurance company you need a real specialist! Once my local doctors started referring me to UCLA things got moving. Learn how the referral process works and advocate for yourself! I'm stage III B/C (unknown primary) and had surgery at UCLA and am being seen there by one of the top Melanoma specialists (I'm in a drug trial).  Good luck, and God Bless you. Find and keep your faith!

Melanoma does indeed suck! If your MD is not a Melanoma Specialist ask him/her why they don't refer you to one! I have a very limited HMO and as soon as my diagnosis was confirmed all of my "in-network" doctors informed the insurance company that a major cancer center, with world renowned surgeons and melanoma specialists, should be taking care of me. Get the "local" physicians to convince the insurance company you need a real specialist! Once my local doctors started referring me to UCLA things got moving. Learn how the referral process works and advocate for yourself! I'm stage III B/C (unknown primary) and had surgery at UCLA and am being seen there by one of the top Melanoma specialists (I'm in a drug trial).  Good luck, and God Bless you. Find and keep your faith!

Melanoma does indeed suck! If your MD is not a Melanoma Specialist ask him/her why they don't refer you to one! I have a very limited HMO and as soon as my diagnosis was confirmed all of my "in-network" doctors informed the insurance company that a major cancer center, with world renowned surgeons and melanoma specialists, should be taking care of me. Get the "local" physicians to convince the insurance company you need a real specialist! Once my local doctors started referring me to UCLA things got moving. Learn how the referral process works and advocate for yourself! I'm stage III B/C (unknown primary) and had surgery at UCLA and am being seen there by one of the top Melanoma specialists (I'm in a drug trial).  Good luck, and God Bless you. Find and keep your faith!

Let them call you stage IV, more treatment options are available in most countries.

Let them call you stage IV, more treatment options are available in most countries.

Let them call you stage IV, more treatment options are available in most countries.