Acral litigious melanoma stage IV

I'm sorry to hear that your husband's melanoma has progressed. It's hard to stay calm and focused when you're in your situation. We've all been there.

You are doing the right thing by soliciting a second opinion. If it's any consolation, Hopkins has a trial going on for those with acral melanoma. I don't know if your husband would qualify but it is something worth asking about.

ECOG 2607: Phase II Study of Dasatinib in Patients with Unresectable Locally Advanced or Metastatic Mucosal, Acral, or Solar Melanoma.  This is a phase II multicenter study for patients with locally advanced or metastatic mucosal melanoma (arising in the mucous membranes, such as the nostrils, mouth, or rectum), acral melanoma (arising in the palms, soles or under the nails), or solar melanoma (arising in skin with long-term sun damage) that cannot be removed by surgery.  The purpose of this study is to evaluate if dasatinib can cause tumor regression in patients with these specific types of melanoma.  Dasatinib is an oral medication that blocks some of the molecules needed for tumor growth.  Dasatinib has historically been used in patients with certain types of leukemia, but has shown some activity in patients with certain types of melanoma.  On this trial, patients will receive dasatinib by mouth twice a day. Treatment may continue for as long as benefit is shown. After finishing treatment, patients will be evaluated periodically for up to 5 years. Eligible patients must be at least 18 years old, have measurable disease and be at least 4 weeks out from chemotherapy, biological therapy, or radiation therapy. Patients who have had previous imatinib or sunitinib are not eligible. Patients with melanomas arising in the eye (ocular) are not eligible.  Prior radiotherapy to a measurable lesion is allowed provided there is radiographic evidence of progression of that lesion.  Patients may have brain metastases provided they have completed radiotherapy or surgical treatment, there is no evidence of progression for at least 8 weeks, and they do not require steroids.  Tumor biopsy material must be available to evaluate genetic changes associated with susceptibility to dasatinib.

It's entirely possible that he may qualify for one of their other trials. But you won't know until you see one of their doctors.

As far as supplements go, you need to do your homework on them. And, lots of it. Medical doctors generally know little about them. MD Anderson in Houston has done studies on curcumin/turmeric. You may want to google that. You can also try to search this site for information on supplements.

I'm sorry to hear that your husband's melanoma has progressed. It's hard to stay calm and focused when you're in your situation. We've all been there.

You are doing the right thing by soliciting a second opinion. If it's any consolation, Hopkins has a trial going on for those with acral melanoma. I don't know if your husband would qualify but it is something worth asking about.

ECOG 2607: Phase II Study of Dasatinib in Patients with Unresectable Locally Advanced or Metastatic Mucosal, Acral, or Solar Melanoma.  This is a phase II multicenter study for patients with locally advanced or metastatic mucosal melanoma (arising in the mucous membranes, such as the nostrils, mouth, or rectum), acral melanoma (arising in the palms, soles or under the nails), or solar melanoma (arising in skin with long-term sun damage) that cannot be removed by surgery.  The purpose of this study is to evaluate if dasatinib can cause tumor regression in patients with these specific types of melanoma.  Dasatinib is an oral medication that blocks some of the molecules needed for tumor growth.  Dasatinib has historically been used in patients with certain types of leukemia, but has shown some activity in patients with certain types of melanoma.  On this trial, patients will receive dasatinib by mouth twice a day. Treatment may continue for as long as benefit is shown. After finishing treatment, patients will be evaluated periodically for up to 5 years. Eligible patients must be at least 18 years old, have measurable disease and be at least 4 weeks out from chemotherapy, biological therapy, or radiation therapy. Patients who have had previous imatinib or sunitinib are not eligible. Patients with melanomas arising in the eye (ocular) are not eligible.  Prior radiotherapy to a measurable lesion is allowed provided there is radiographic evidence of progression of that lesion.  Patients may have brain metastases provided they have completed radiotherapy or surgical treatment, there is no evidence of progression for at least 8 weeks, and they do not require steroids.  Tumor biopsy material must be available to evaluate genetic changes associated with susceptibility to dasatinib.

It's entirely possible that he may qualify for one of their other trials. But you won't know until you see one of their doctors.

As far as supplements go, you need to do your homework on them. And, lots of it. Medical doctors generally know little about them. MD Anderson in Houston has done studies on curcumin/turmeric. You may want to google that. You can also try to search this site for information on supplements.

I'm sorry to hear that your husband's melanoma has progressed. It's hard to stay calm and focused when you're in your situation. We've all been there.

You are doing the right thing by soliciting a second opinion. If it's any consolation, Hopkins has a trial going on for those with acral melanoma. I don't know if your husband would qualify but it is something worth asking about.

ECOG 2607: Phase II Study of Dasatinib in Patients with Unresectable Locally Advanced or Metastatic Mucosal, Acral, or Solar Melanoma.  This is a phase II multicenter study for patients with locally advanced or metastatic mucosal melanoma (arising in the mucous membranes, such as the nostrils, mouth, or rectum), acral melanoma (arising in the palms, soles or under the nails), or solar melanoma (arising in skin with long-term sun damage) that cannot be removed by surgery.  The purpose of this study is to evaluate if dasatinib can cause tumor regression in patients with these specific types of melanoma.  Dasatinib is an oral medication that blocks some of the molecules needed for tumor growth.  Dasatinib has historically been used in patients with certain types of leukemia, but has shown some activity in patients with certain types of melanoma.  On this trial, patients will receive dasatinib by mouth twice a day. Treatment may continue for as long as benefit is shown. After finishing treatment, patients will be evaluated periodically for up to 5 years. Eligible patients must be at least 18 years old, have measurable disease and be at least 4 weeks out from chemotherapy, biological therapy, or radiation therapy. Patients who have had previous imatinib or sunitinib are not eligible. Patients with melanomas arising in the eye (ocular) are not eligible.  Prior radiotherapy to a measurable lesion is allowed provided there is radiographic evidence of progression of that lesion.  Patients may have brain metastases provided they have completed radiotherapy or surgical treatment, there is no evidence of progression for at least 8 weeks, and they do not require steroids.  Tumor biopsy material must be available to evaluate genetic changes associated with susceptibility to dasatinib.

It's entirely possible that he may qualify for one of their other trials. But you won't know until you see one of their doctors.

As far as supplements go, you need to do your homework on them. And, lots of it. Medical doctors generally know little about them. MD Anderson in Houston has done studies on curcumin/turmeric. You may want to google that. You can also try to search this site for information on supplements.

Maureen,

Stage IV is serious, but it can be beat.  I beat it with a lot of help and support from my wife, and good care. My initial diagnosis was stage 4 melanoma in February 2006, when I was living in Northern Virginia.  I went to Hopkins and saw Dr Sharfman.  I did 3 courses of IL-2 (2 rounds each), because the tumors were shrinking/disappearing after each course.  After the 3rd course, I only had one enlarged lymph node left, but it was getting bigger.  I was sent to NIH in Bethesda and participated in 2 different immunotherapy clinical trials.  I got a partial response in the first one, then had a brain met and went back to Hopkins to Dr Kleinberg for gamma knife.  The second clinical trial at NIH was December of 2007.  By November of 2008 there no trace of disease.  I have been clean since.  Since you are in the DC area I would suggest you investigate similar options.  Best of luck to you.

Steve (living in Maine)

Maureen,

Stage IV is serious, but it can be beat.  I beat it with a lot of help and support from my wife, and good care. My initial diagnosis was stage 4 melanoma in February 2006, when I was living in Northern Virginia.  I went to Hopkins and saw Dr Sharfman.  I did 3 courses of IL-2 (2 rounds each), because the tumors were shrinking/disappearing after each course.  After the 3rd course, I only had one enlarged lymph node left, but it was getting bigger.  I was sent to NIH in Bethesda and participated in 2 different immunotherapy clinical trials.  I got a partial response in the first one, then had a brain met and went back to Hopkins to Dr Kleinberg for gamma knife.  The second clinical trial at NIH was December of 2007.  By November of 2008 there no trace of disease.  I have been clean since.  Since you are in the DC area I would suggest you investigate similar options.  Best of luck to you.

Steve (living in Maine)

Maureen,

Stage IV is serious, but it can be beat.  I beat it with a lot of help and support from my wife, and good care. My initial diagnosis was stage 4 melanoma in February 2006, when I was living in Northern Virginia.  I went to Hopkins and saw Dr Sharfman.  I did 3 courses of IL-2 (2 rounds each), because the tumors were shrinking/disappearing after each course.  After the 3rd course, I only had one enlarged lymph node left, but it was getting bigger.  I was sent to NIH in Bethesda and participated in 2 different immunotherapy clinical trials.  I got a partial response in the first one, then had a brain met and went back to Hopkins to Dr Kleinberg for gamma knife.  The second clinical trial at NIH was December of 2007.  By November of 2008 there no trace of disease.  I have been clean since.  Since you are in the DC area I would suggest you investigate similar options.  Best of luck to you.

Steve (living in Maine)

Maureen, I live in Northern Va and go to UVA.  They are very good Oncologist there to. 

    Dr Sharfman at John Hopkins has a great reputation and is envolved in much cutting edge work and trials.

All the Dasatinib melanoma trials I have heard of relaate to the c-kit melanomas.

I do use the curcumic and an adult aspirin a day in my supplements.  I used to take fair amount of anti-oxidents  until I went on the Gleevec (Same class  of drug as the Dasatinib).  These drugs are delivered into the tumor cells by oxidents, so heavy amounts of anti-oxidents, in many researchers beliefs, may reduce the volume of the active ingredient that gets inside the tumor cells.  My maian anti oxidents now come from the fresh fruits and vegetables versus supplemental pills.

   I have tried to increase (not drastically!) my intake of broccolli, asperagus and leavey green vegetables as well.

   I lean towards IL-2 and Yervoy as the FDA approved immunological treatments to try if one does not have specific DNA mutations for which targeted treatments are available.  Among the clinical trials, the Anti-PD-1 trials currently seem to provide the best option if one can get into one of these trials.  There are different criteria for getting   into different PD-1 trials.

Maureen, I live in Northern Va and go to UVA.  They are very good Oncologist there to. 

    Dr Sharfman at John Hopkins has a great reputation and is envolved in much cutting edge work and trials.

All the Dasatinib melanoma trials I have heard of relaate to the c-kit melanomas.

I do use the curcumic and an adult aspirin a day in my supplements.  I used to take fair amount of anti-oxidents  until I went on the Gleevec (Same class  of drug as the Dasatinib).  These drugs are delivered into the tumor cells by oxidents, so heavy amounts of anti-oxidents, in many researchers beliefs, may reduce the volume of the active ingredient that gets inside the tumor cells.  My maian anti oxidents now come from the fresh fruits and vegetables versus supplemental pills.

   I have tried to increase (not drastically!) my intake of broccolli, asperagus and leavey green vegetables as well.

   I lean towards IL-2 and Yervoy as the FDA approved immunological treatments to try if one does not have specific DNA mutations for which targeted treatments are available.  Among the clinical trials, the Anti-PD-1 trials currently seem to provide the best option if one can get into one of these trials.  There are different criteria for getting   into different PD-1 trials.

Maureen, I live in Northern Va and go to UVA.  They are very good Oncologist there to. 

    Dr Sharfman at John Hopkins has a great reputation and is envolved in much cutting edge work and trials.

All the Dasatinib melanoma trials I have heard of relaate to the c-kit melanomas.

I do use the curcumic and an adult aspirin a day in my supplements.  I used to take fair amount of anti-oxidents  until I went on the Gleevec (Same class  of drug as the Dasatinib).  These drugs are delivered into the tumor cells by oxidents, so heavy amounts of anti-oxidents, in many researchers beliefs, may reduce the volume of the active ingredient that gets inside the tumor cells.  My maian anti oxidents now come from the fresh fruits and vegetables versus supplemental pills.

   I have tried to increase (not drastically!) my intake of broccolli, asperagus and leavey green vegetables as well.

   I lean towards IL-2 and Yervoy as the FDA approved immunological treatments to try if one does not have specific DNA mutations for which targeted treatments are available.  Among the clinical trials, the Anti-PD-1 trials currently seem to provide the best option if one can get into one of these trials.  There are different criteria for getting   into different PD-1 trials.

Hi Maureen,

My wife Mariëtte is in the same situation as your husband, stage IV acral lentiginous, with mets in her lungs. She is in an anti-PD1 trial at UCSF in San Francisco. After 24 weeks she seems to be partially responsive in that the tumors stopped growing. It is very unlikely to be fully responsive to anti-PD1 with acral lentiginous, because it seems that there is no PD-L1 expression in that type, which recently was discovered to be an indication for responsiveness to anti-PD1. 

Hi Maureen,

My wife Mariëtte is in the same situation as your husband, stage IV acral lentiginous, with mets in her lungs. She is in an anti-PD1 trial at UCSF in San Francisco. After 24 weeks she seems to be partially responsive in that the tumors stopped growing. It is very unlikely to be fully responsive to anti-PD1 with acral lentiginous, because it seems that there is no PD-L1 expression in that type, which recently was discovered to be an indication for responsiveness to anti-PD1. 

Hi Maureen,

My wife Mariëtte is in the same situation as your husband, stage IV acral lentiginous, with mets in her lungs. She is in an anti-PD1 trial at UCSF in San Francisco. After 24 weeks she seems to be partially responsive in that the tumors stopped growing. It is very unlikely to be fully responsive to anti-PD1 with acral lentiginous, because it seems that there is no PD-L1 expression in that type, which recently was discovered to be an indication for responsiveness to anti-PD1.