New to the world of metastatic melanoma, help please

The rare type might be "Acral melanoma".  This is typically found on the soles of the feet or palms – more often in darker skinned individuals.  Is that called out on your pathology report?

Staging.   It might be that he is stage IV if the lymph nodes "deep in the abdomen" are not considered part of the groin node basin.  Anything that goes beyond the first drainage basin is considered stage IV even it if is just in the lymph nodes.  The staging would probably need to be discussed with the doctor.

Is your father seeing a general oncologist or a melanoma specialist?  If he can see a specialist, that is where he needs to be.  You want all the treatment options available.  He might also consider clinical trials as possible option.   http://www.clinicaltrials.gov is the site.  General oncologists aren't typically as up to date on current procedures as specialists are.

PET scans have a resolution of about 5 or 6 millimeters.  Disease smaller than that can't be picked up.  But PET scans are also known for their false positive and false negative results.  That's why they are typically combined with a CT scan to help rule out false findings. 

Keep researching and keep asking questions!

Best wishes,

Janner

The rare type might be "Acral melanoma".  This is typically found on the soles of the feet or palms – more often in darker skinned individuals.  Is that called out on your pathology report?

Staging.   It might be that he is stage IV if the lymph nodes "deep in the abdomen" are not considered part of the groin node basin.  Anything that goes beyond the first drainage basin is considered stage IV even it if is just in the lymph nodes.  The staging would probably need to be discussed with the doctor.

Is your father seeing a general oncologist or a melanoma specialist?  If he can see a specialist, that is where he needs to be.  You want all the treatment options available.  He might also consider clinical trials as possible option.   http://www.clinicaltrials.gov is the site.  General oncologists aren't typically as up to date on current procedures as specialists are.

PET scans have a resolution of about 5 or 6 millimeters.  Disease smaller than that can't be picked up.  But PET scans are also known for their false positive and false negative results.  That's why they are typically combined with a CT scan to help rule out false findings. 

Keep researching and keep asking questions!

Best wishes,

Janner

Hi Trisha,

As Janner noted, it is really critical that your Dad be seen by a melanoma specialist as soon as possible to evaluate all this carefully.  He should also be tested for any genetic mutations he may be positive for such as Ckit which will help facilitate which treatment options may be most effective.

Where in California do you live (I live in the Bay Area of No. California0 and where is your Dad being treated currently?

Glad you found us – we are here to help ..

Mary

Hi Trisha,

As Janner noted, it is really critical that your Dad be seen by a melanoma specialist as soon as possible to evaluate all this carefully.  He should also be tested for any genetic mutations he may be positive for such as Ckit which will help facilitate which treatment options may be most effective.

Where in California do you live (I live in the Bay Area of No. California0 and where is your Dad being treated currently?

Glad you found us – we are here to help ..

Mary

Hi Trisha,

As Becky has noted,  I would highly recommend going to see either (or both) of these two doctors for opinions.

Dr. Adil Daud, UCSF:  415-353-9900

I am not his patient but have met him several times –  he is very nice and I have friends who have been his patients and they all love him.

Dr. David Minor, California Pacific Med. Ctr:  415-885-8600

I am currently a patient of Dr. Minor as I did a treatment at CPMC 2 years ago.  

Both of these Drs. have clinical trials going on, are melanoma specialists and have a great deal of knowledge..   I would think that your Dad needs to have CT scans as well to obtain a complete picture of what is going on.

Good luck and let us know of his progress . ..

Mary

Hi Trisha,

As Becky has noted,  I would highly recommend going to see either (or both) of these two doctors for opinions.

Dr. Adil Daud, UCSF:  415-353-9900

I am not his patient but have met him several times –  he is very nice and I have friends who have been his patients and they all love him.

Dr. David Minor, California Pacific Med. Ctr:  415-885-8600

I am currently a patient of Dr. Minor as I did a treatment at CPMC 2 years ago.  

Both of these Drs. have clinical trials going on, are melanoma specialists and have a great deal of knowledge..   I would think that your Dad needs to have CT scans as well to obtain a complete picture of what is going on.

Good luck and let us know of his progress . ..

Mary

Sounds likely to be stage III.  It also sounds like Acral Lentigimous Melanoma which is about as rare as my mucousal melanooma.  Out of my first pathology reportsfor the first four tumor removals, only one used the word mucousal.  Both types of melanoma are rare even among melanoma patients.  There is a relationship between these two types that can be beneficial to some of us.  Look in the archives for Mucousal and C-kit.  C-kit  oncoproteins and C-kit DNA mutations are not uncommon in either Mucousal nnor acral lentigamous melanomas.   Get a C-kit stain test run locally on the remmoved tumor tissue.   If the local stain test is posistive for c-kit, then have the tumor material sent to a specialized DNA capabale lab for the DNA mutation test.  There are at least 4 targeted drugs being tested relative to C-Kit melanona's.  Most are FDA approved for other cancers, such as GIST, some lymphomas, some lukemia's

Sounds likely to be a stage III.  It also sounds like Acral Lentiginous Melanoma which is about as rare as my Mucosal melanoma.  Out of my first pathology reports for the first four tumor removals, only one used the word mucosal.  Both types of melanoma are rare even among melanoma patients.  There is a relationship between these two types that can be beneficial to some of us.  Look in the archives for Mucosal and C-kit.  C-kit  oncoproteins and C-kit DNA mutations are not uncommon in either Mucosal nor Acral lentiginous melanomas.   Get a C-kit stain test run locally on the removed tumor tissue.   If the local stain test is positive for c-kit, then have the tumor material sent to a specialized DNA capable lab for the DNA mutation test.  There are at least 4 targeted drugs being tested relative to C-Kit melanoma’s.  Most are FDA approved for other cancers, such as GIST, some lymphomas, some leukemia’s. These drugs have turned many of the cases of GIST, lymphomas, leukemia’s. Into chronicle diseases rather than to be automatically catastrophic in the near term. Each drug may be more effective on a different DNA mutation. It has been learned that melanoma in neither just a skin cancer, nor just a melanoma. The location and specific oncoprotein and DNA mutations and effected signaling pathways all determine which of the actual melanoma's one actually has and how it needs to be attacked.

PET scans do not measure cancer locations. They measure locations with a high SUV uptake (high sugar concentration) This can be for many reasons other than cancer. Some of the highlighted locations might be cancer. PET is what showed my groin area inguinal and illiac lymph nodes like a bright light bulb. The PET spotted locations are a starting point to check out, not an end point. My Pets have warned about my damaged knee and ankle from a 1980 wreck in Germany, about my dental surgery work, my deep and superficial groin node tumors. The many PETs missed the additional tumors in my anus and groin and neck. I found them by feel myself.. Part of my History is in the profile. Part of the data has been removed since the new profile area seems to not allow as much data to be retained as did the old one. My Carepages.com blog (under JerryEllis) contains information beyond where data was dropped in the cut-over to the new profiles.

Short story: My GP misdiagnosed me for 3 ½ years. New GP sent me to a local surgeon who learned in May 2006 that I had melanoma. He delayed followup actions and wanted to wait until after the start of the next year to even look at a rapidity growing lump in my left groin that I identified in October 2006.. I went to another surgeon and the night before my fourth melanoma surgery, I found by feel anther lump near the anus. The UVA surgeon removed both the rear tumor and the left groin deep and superficial front lymph nodes. (Jan 26, 2007. Feb 2007 x-rays showed many spots in lungs. NOW STAGE IV Followup CT scans in March 2007 showed innumerable growing tumors in both lungs. I was told by the local general oncologist in Warrenton that I would have major breathing problems within 30 days and that by statistics should not expect to survive beyond six months. I researched options and talked to people that had received intensive abdominal radiation treatments and was very unhappy with what I heard about melanoma's response to radiation and the damage done to the abdominal organs by the intensive radiation treatments. I opted to do neither the radiation nor interferon. I spoke to many families whose loved on had had doctors delay truing IL-2 due to it's being a rough treatment. Most spouses stated that their loved one had the tried other chemo treatments, while saving IL-2 until the end. Most then stated that their loved one was not able to recover from the other chemo's in time to partake of the IL-2. They died first. I went with the ones that tried IL-2 early in the melanoma treatment path. These 49 bags of IL-2, expertly administered by Dr Weiss kept me stable as a partial responder for 20 months. During this time ONE per review articled was published about C-kit results on one mucosal melanoma c-kit patient. I reviewed this article and talked with Dr WenJen Hwu at MD Anderson about work she was doing. Presented my findings to my UVA Oncology team. They had nothing to offer that appeared to have a better chance than the targeted drug that I wanted done. The again wildly growing new tumors stopped growing within 30 days on Gleevec and have remained essentially staple from March 2009 through my June 13, 2011 scans.

So briefly, Melanoma misdiagnosed Dec 2002-May 2006. Proper diagnoses May 2006. Slow follow-up thru DEC 2006. Rapid followup by the pro's at UVA Cancer Center.(Jan 2007) Loaded moving truck in March 2008 in Colorado Springs, Co. Drove it into the Rocky Mountains and unloaded it at 9652 feet. No breathing problems. When I went to STAGE IV, (Feb 2007) I told my spouse that she needed to learn all about our finances, bills, what is where and how to manage things without me. My next steps were to learn what I can/could learn about melanoma, myself and what was where in medical research that seemed to be relevant to my particular case.. I wanted her to be able to continue life without me, just didn't want to leave her. And all these great grand kids (#15 in August). (Even a wild horse couldn't drag me away for more than a few months! I will take proper riding boots this time!)

Shoot me an email and I will be glad to communicate either via, the MPIP/Chat room/ BB/emails/ or telephonically..

I live in Northern Virginia about 50 miles from the Washington, DC beltway.

JerryfromFauq

I ain't a statistic! Will be one day, but now, I'm just a stubborn ME.

10 ½ years with melanoma. (unstaged-undiagnosed 3.5 yrs, unstaged but diagnosed for 8 months, Stage IV for 4 yrs 4 months.(but not NED) Where is that fellow?

Sounds likely to be stage III.  It also sounds like Acral Lentigimous Melanoma which is about as rare as my mucousal melanooma.  Out of my first pathology reportsfor the first four tumor removals, only one used the word mucousal.  Both types of melanoma are rare even among melanoma patients.  There is a relationship between these two types that can be beneficial to some of us.  Look in the archives for Mucousal and C-kit.  C-kit  oncoproteins and C-kit DNA mutations are not uncommon in either Mucousal nnor acral lentigamous melanomas.   Get a C-kit stain test run locally on the remmoved tumor tissue.   If the local stain test is posistive for c-kit, then have the tumor material sent to a specialized DNA capabale lab for the DNA mutation test.  There are at least 4 targeted drugs being tested relative to C-Kit melanona's.  Most are FDA approved for other cancers, such as GIST, some lymphomas, some lukemia's

Sounds likely to be a stage III.  It also sounds like Acral Lentiginous Melanoma which is about as rare as my Mucosal melanoma.  Out of my first pathology reports for the first four tumor removals, only one used the word mucosal.  Both types of melanoma are rare even among melanoma patients.  There is a relationship between these two types that can be beneficial to some of us.  Look in the archives for Mucosal and C-kit.  C-kit  oncoproteins and C-kit DNA mutations are not uncommon in either Mucosal nor Acral lentiginous melanomas.   Get a C-kit stain test run locally on the removed tumor tissue.   If the local stain test is positive for c-kit, then have the tumor material sent to a specialized DNA capable lab for the DNA mutation test.  There are at least 4 targeted drugs being tested relative to C-Kit melanoma’s.  Most are FDA approved for other cancers, such as GIST, some lymphomas, some leukemia’s. These drugs have turned many of the cases of GIST, lymphomas, leukemia’s. Into chronicle diseases rather than to be automatically catastrophic in the near term. Each drug may be more effective on a different DNA mutation. It has been learned that melanoma in neither just a skin cancer, nor just a melanoma. The location and specific oncoprotein and DNA mutations and effected signaling pathways all determine which of the actual melanoma's one actually has and how it needs to be attacked.

PET scans do not measure cancer locations. They measure locations with a high SUV uptake (high sugar concentration) This can be for many reasons other than cancer. Some of the highlighted locations might be cancer. PET is what showed my groin area inguinal and illiac lymph nodes like a bright light bulb. The PET spotted locations are a starting point to check out, not an end point. My Pets have warned about my damaged knee and ankle from a 1980 wreck in Germany, about my dental surgery work, my deep and superficial groin node tumors. The many PETs missed the additional tumors in my anus and groin and neck. I found them by feel myself.. Part of my History is in the profile. Part of the data has been removed since the new profile area seems to not allow as much data to be retained as did the old one. My Carepages.com blog (under JerryEllis) contains information beyond where data was dropped in the cut-over to the new profiles.

Short story: My GP misdiagnosed me for 3 ½ years. New GP sent me to a local surgeon who learned in May 2006 that I had melanoma. He delayed followup actions and wanted to wait until after the start of the next year to even look at a rapidity growing lump in my left groin that I identified in October 2006.. I went to another surgeon and the night before my fourth melanoma surgery, I found by feel anther lump near the anus. The UVA surgeon removed both the rear tumor and the left groin deep and superficial front lymph nodes. (Jan 26, 2007. Feb 2007 x-rays showed many spots in lungs. NOW STAGE IV Followup CT scans in March 2007 showed innumerable growing tumors in both lungs. I was told by the local general oncologist in Warrenton that I would have major breathing problems within 30 days and that by statistics should not expect to survive beyond six months. I researched options and talked to people that had received intensive abdominal radiation treatments and was very unhappy with what I heard about melanoma's response to radiation and the damage done to the abdominal organs by the intensive radiation treatments. I opted to do neither the radiation nor interferon. I spoke to many families whose loved on had had doctors delay truing IL-2 due to it's being a rough treatment. Most spouses stated that their loved one had the tried other chemo treatments, while saving IL-2 until the end. Most then stated that their loved one was not able to recover from the other chemo's in time to partake of the IL-2. They died first. I went with the ones that tried IL-2 early in the melanoma treatment path. These 49 bags of IL-2, expertly administered by Dr Weiss kept me stable as a partial responder for 20 months. During this time ONE per review articled was published about C-kit results on one mucosal melanoma c-kit patient. I reviewed this article and talked with Dr WenJen Hwu at MD Anderson about work she was doing. Presented my findings to my UVA Oncology team. They had nothing to offer that appeared to have a better chance than the targeted drug that I wanted done. The again wildly growing new tumors stopped growing within 30 days on Gleevec and have remained essentially staple from March 2009 through my June 13, 2011 scans.

So briefly, Melanoma misdiagnosed Dec 2002-May 2006. Proper diagnoses May 2006. Slow follow-up thru DEC 2006. Rapid followup by the pro's at UVA Cancer Center.(Jan 2007) Loaded moving truck in March 2008 in Colorado Springs, Co. Drove it into the Rocky Mountains and unloaded it at 9652 feet. No breathing problems. When I went to STAGE IV, (Feb 2007) I told my spouse that she needed to learn all about our finances, bills, what is where and how to manage things without me. My next steps were to learn what I can/could learn about melanoma, myself and what was where in medical research that seemed to be relevant to my particular case.. I wanted her to be able to continue life without me, just didn't want to leave her. And all these great grand kids (#15 in August). (Even a wild horse couldn't drag me away for more than a few months! I will take proper riding boots this time!)

Shoot me an email and I will be glad to communicate either via, the MPIP/Chat room/ BB/emails/ or telephonically..

I live in Northern Virginia about 50 miles from the Washington, DC beltway.

JerryfromFauq

I ain't a statistic! Will be one day, but now, I'm just a stubborn ME.

10 ½ years with melanoma. (unstaged-undiagnosed 3.5 yrs, unstaged but diagnosed for 8 months, Stage IV for 4 yrs 4 months.(but not NED) Where is that fellow?

I have ALM Melanoma… sounds like what your father has. 3 weeks ago had surgery on the bottom of my foot and skin graft… I went to MD Anderson – they were wonderful there.

Logan

I have ALM Melanoma… sounds like what your father has. 3 weeks ago had surgery on the bottom of my foot and skin graft… I went to MD Anderson – they were wonderful there.

Logan