Melvynman

For starters get away from milk and all dairy.  You could drink red wine instead of beer, I don't but I should.  Worry about that other shit later.  I will email you a list somebody sent me I have to go find it.  

For starters get away from milk and all dairy.  You could drink red wine instead of beer, I don't but I should.  Worry about that other shit later.  I will email you a list somebody sent me I have to go find it.  

What is the diagnosis?  I am seven year survivor of Clear Cell Sarcoma (CCS) and it is not a Melanoma. 

What is the diagnosis?  I am seven year survivor of Clear Cell Sarcoma (CCS) and it is not a Melanoma. 

Thats big ass lump!  

I don't remember but assume you were missed diagnosed when you first show this to a doctor, most of us had the lump for years and the doctors told it was noting.  I assume you move on to oncologist and some kind of surgeons.  Probably a team of doctors and you are the hottest topic today.  They have probably read every reported case all four hundred of them, they are prepared.  They are good people you want to trust them with you life.

You posted looking for others with this rare cancer.  I found your post because I have this cancer and I have search engines looking for and people with this cancer.  I found you because some replied talking about the proper names for this cancer and used the term Clear Cell Sarcoma and my search engine found it and alerted me to your post.  

I not here to pray or comfort you.  You will get plenty of that when your dying.   I hate this cancer.  I am a vegan and I like meat but I want to live.  I don't use deodorants so have to shower every few hour or I smell.  My toothpaste doesn't have fluoride.  At first glance people think I am health freak.  I didn't get here overnight but slowly I got here.  I never stop learning and making small changes to my life style, I want to live.  

Their is only you and I in this conversation.  I know of others with this cancer and they are more of the pray and comfort type.  One day this cancer is going to kill you and I. I am seven years in so I am either closer to death or farther away then you. I don't know which.  Death is coming to everyone.  

If somebody got a gun to your head do you want the first cop to show up and try and shoot the guy in head or would you rather wait for a swat team with a sharp shooter?  

Here is a list of qualified center in California or get to a Orthopedic Oncologist.  Your cancer is rare and it will open doors for you.  Call one of these centers.  You only get one shot at this next surgery and you want the best.  Got this off the web.  This cancer will kill you one day just not today.  These guy will help you live longer.  

The following is a list of some of the medical centers and hospitals specializing in sarcoma. While the list is not comprehensive, it includes the leaders in sarcoma research and treatment. Because sarcomas are rare, it is important to find physicians and multidisciplinary treatment centers that have experience with this disease. We hope the following list makes finding a specialist easier to accomplish.

California

Cedars Sinai
Los Angeles, CA

City of Hope
Duarte, CA

Children’s Hospital of Los Angeles
Los Angeles, CA

Stanford University Cancer Center
Palo Alto, CA

University of California Davis Sarcoma Program
Davis, CA

UCLA Sarcoma Program
Los Angeles, CA

University of California, San Francisco
San Francisco, CA

Thats big ass lump!  

I don't remember but assume you were missed diagnosed when you first show this to a doctor, most of us had the lump for years and the doctors told it was noting.  I assume you move on to oncologist and some kind of surgeons.  Probably a team of doctors and you are the hottest topic today.  They have probably read every reported case all four hundred of them, they are prepared.  They are good people you want to trust them with you life.

You posted looking for others with this rare cancer.  I found your post because I have this cancer and I have search engines looking for and people with this cancer.  I found you because some replied talking about the proper names for this cancer and used the term Clear Cell Sarcoma and my search engine found it and alerted me to your post.  

I not here to pray or comfort you.  You will get plenty of that when your dying.   I hate this cancer.  I am a vegan and I like meat but I want to live.  I don't use deodorants so have to shower every few hour or I smell.  My toothpaste doesn't have fluoride.  At first glance people think I am health freak.  I didn't get here overnight but slowly I got here.  I never stop learning and making small changes to my life style, I want to live.  

Their is only you and I in this conversation.  I know of others with this cancer and they are more of the pray and comfort type.  One day this cancer is going to kill you and I. I am seven years in so I am either closer to death or farther away then you. I don't know which.  Death is coming to everyone.  

If somebody got a gun to your head do you want the first cop to show up and try and shoot the guy in head or would you rather wait for a swat team with a sharp shooter?  

Here is a list of qualified center in California or get to a Orthopedic Oncologist.  Your cancer is rare and it will open doors for you.  Call one of these centers.  You only get one shot at this next surgery and you want the best.  Got this off the web.  This cancer will kill you one day just not today.  These guy will help you live longer.  

The following is a list of some of the medical centers and hospitals specializing in sarcoma. While the list is not comprehensive, it includes the leaders in sarcoma research and treatment. Because sarcomas are rare, it is important to find physicians and multidisciplinary treatment centers that have experience with this disease. We hope the following list makes finding a specialist easier to accomplish.

California

Cedars Sinai
Los Angeles, CA

City of Hope
Duarte, CA

Children’s Hospital of Los Angeles
Los Angeles, CA

Stanford University Cancer Center
Palo Alto, CA

University of California Davis Sarcoma Program
Davis, CA

UCLA Sarcoma Program
Los Angeles, CA

University of California, San Francisco
San Francisco, CA

This next surgery is the most important.  They have to get it all.  Your on a Melanoma massage broad and you do not have a melanoma.  You have a Sarcoma, a very aggressive  Sarcoma.  You need to see doctors that specialize in Sarcoma's.  Your life depends on this next surgery and its outcome.  You need to be seen by a Sarcoma specialist.  Your doctor should should be talking about amputation not radiation.  The must get it all or take the arm off.  Sorry.  Do you want to see your children go to school or junior high school or maybe graduate from high school?  How long you live depends on this next  surgery.  This surgery if done wrong you will die within the next couple of years.  Done right and maybe you can see your kids grow up.  

I see an orthopedic oncologist every year and we talk about patients that he sees that have come and gone.  One common thread is that others doctors send him patients after its too late.  They screw up the surgeries.  Everything you have written suggest these doctors are not Sarcoma specialist.  Your cancer can and will open doors.  There are Sarcoma center with specialist and Orthopedic Oncologist all over the county, go see one NOW.

I am seven years with this cancer and I plan to make it to ten and beyond.  I know it will kill me one day but not today.  

Good luck

This next surgery is the most important.  They have to get it all.  Your on a Melanoma massage broad and you do not have a melanoma.  You have a Sarcoma, a very aggressive  Sarcoma.  You need to see doctors that specialize in Sarcoma's.  Your life depends on this next surgery and its outcome.  You need to be seen by a Sarcoma specialist.  Your doctor should should be talking about amputation not radiation.  The must get it all or take the arm off.  Sorry.  Do you want to see your children go to school or junior high school or maybe graduate from high school?  How long you live depends on this next  surgery.  This surgery if done wrong you will die within the next couple of years.  Done right and maybe you can see your kids grow up.  

I see an orthopedic oncologist every year and we talk about patients that he sees that have come and gone.  One common thread is that others doctors send him patients after its too late.  They screw up the surgeries.  Everything you have written suggest these doctors are not Sarcoma specialist.  Your cancer can and will open doors.  There are Sarcoma center with specialist and Orthopedic Oncologist all over the county, go see one NOW.

I am seven years with this cancer and I plan to make it to ten and beyond.  I know it will kill me one day but not today.  

Good luck

YES!

I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue.  It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.

If this is what you have this is what I know and what you need to look into.

It's rare, I mean very very rare.  About 400 published reports of it since in discovered in the the 60's.  Only about  eight diagnosed yearly in the world.  Most likely your doctor has never seen this before.  You need to know if he has.   It does not respond to radiation or Chemo.  The size of your tumor matters.  

This is what I would do:

Go get seen by one of two types of doctors that specialize in the type of cancer.  

Orthopedic Oncologist only about 120 in the whole county.  

or a Sarcoma Specialist.  You have a Sarcoma.  I don't know much these guy but they are more common. 

Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report.  Hopefully the pathologist send it out for a second opinion.  

Numbers: 45% to 65 % live five years.  Only 10% live ten years or more.  Sorry.  I have read of people living 28 and 23 years.  Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do. 

Get to doctors that specialize in treating Soft Tissue Sarcoma's.  

You have grown a cancerous tumor and  you need to stop feeding them.  Don't eat dairy or red meat.   Change your diet to cancer fighting foods.  You have cancer stop feeding cancer.  

Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow. 

I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us.  I live in Orange County Ca, we can meet.  I have wife and two kids.

If you got what I got it wants to kill you!  You are in a fight for your life! I hope you win!

Darryl

YES!

I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue.  It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.

If this is what you have this is what I know and what you need to look into.

It's rare, I mean very very rare.  About 400 published reports of it since in discovered in the the 60's.  Only about  eight diagnosed yearly in the world.  Most likely your doctor has never seen this before.  You need to know if he has.   It does not respond to radiation or Chemo.  The size of your tumor matters.  

This is what I would do:

Go get seen by one of two types of doctors that specialize in the type of cancer.  

Orthopedic Oncologist only about 120 in the whole county.  

or a Sarcoma Specialist.  You have a Sarcoma.  I don't know much these guy but they are more common. 

Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report.  Hopefully the pathologist send it out for a second opinion.  

Numbers: 45% to 65 % live five years.  Only 10% live ten years or more.  Sorry.  I have read of people living 28 and 23 years.  Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do. 

Get to doctors that specialize in treating Soft Tissue Sarcoma's.  

You have grown a cancerous tumor and  you need to stop feeding them.  Don't eat dairy or red meat.   Change your diet to cancer fighting foods.  You have cancer stop feeding cancer.  

Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow. 

I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us.  I live in Orange County Ca, we can meet.  I have wife and two kids.

If you got what I got it wants to kill you!  You are in a fight for your life! I hope you win!

Darryl

YES!

I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue.  It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.

If this is what you have this is what I know and what you need to look into.

It's rare, I mean very very rare.  About 400 published reports of it since in discovered in the the 60's.  Only about  eight diagnosed yearly in the world.  Most likely your doctor has never seen this before.  You need to know if he has.   It does not respond to radiation or Chemo.  The size of your tumor matters.  

This is what I would do:

Go get seen by one of two types of doctors that specialize in the type of cancer.  

Orthopedic Oncologist only about 120 in the whole county.  

or a Sarcoma Specialist.  You have a Sarcoma.  I don't know much these guy but they are more common. 

Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report.  Hopefully the pathologist send it out for a second opinion.  

Numbers: 45% to 65 % live five years.  Only 10% live ten years or more.  Sorry.  I have read of people living 28 and 23 years.  Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do. 

Get to doctors that specialize in treating Soft Tissue Sarcoma's.  

You have grown a cancerous tumor and  you need to stop feeding them.  Don't eat dairy or red meat.   Change your diet to cancer fighting foods.  You have cancer stop feeding cancer.  

Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow. 

I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us.  I live in Orange County Ca, we can meet.  I have wife and two kids.

If you got what I got it wants to kill you!  You are in a fight for your life! I hope you win!

Darryl

YES!

I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue.  It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.

If this is what you have this is what I know and what you need to look into.

It's rare, I mean very very rare.  About 400 published reports of it since in discovered in the the 60's.  Only about  eight diagnosed yearly in the world.  Most likely your doctor has never seen this before.  You need to know if he has.   It does not respond to radiation or Chemo.  The size of your tumor matters.  

This is what I would do:

Go get seen by one of two types of doctors that specialize in the type of cancer.  

Orthopedic Oncologist only about 120 in the whole county.  

or a Sarcoma Specialist.  You have a Sarcoma.  I don't know much these guy but they are more common. 

Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report.  Hopefully the pathologist send it out for a second opinion.  

Numbers: 45% to 65 % live five years.  Only 10% live ten years or more.  Sorry.  I have read of people living 28 and 23 years.  Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do. 

Get to doctors that specialize in treating Soft Tissue Sarcoma's.  

You have grown a cancerous tumor and  you need to stop feeding them.  Don't eat dairy or red meat.   Change your diet to cancer fighting foods.  You have cancer stop feeding cancer.  

Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow. 

I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us.  I live in Orange County Ca, we can meet.  I have wife and two kids.

If you got what I got it wants to kill you!  You are in a fight for your life! I hope you win!

Darryl