Phyllis in IA

Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

Phyllis 

Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

Phyllis 

Matt, I will just add one more success story to those already posted.  I rarely come to this site any more–not sure why I did today, but your post caught my eye and I wanted to offer a bit more encouragement to what you've already gotten.  My husband was originally diagnosed in 1985 at age 38 when a mole was removed from his back. Fast forward 13 years to 1998 when it was discovered in his axillary lymph nodes.  Long story short, he had 35 positive axillary lymph nodes, and 24 positive supra-clavicular nodes.  He had a full dissection of both basins, 4 rounds of bio-chemo, and radiation to his shoulder/neck.  He has remained NED since 1999, and the melanoma has never gone to his major organs.  He does have significant lymphedema, along with both muscle and nerve damage which has left his right arm pretty useless.  The trade-off is that he is alive and living a normal life.  (We think some of the damage is due to the local radiation oncologist who a few years later lost his license because of his overly aggressive radiation practices.)  I would concur with the others that your feelings at this time are very normal.  Give yourself some time to process all this info, be sure you are being seen by a melanoma specialist, get 2nd and 3rd opinions if it seems necessary (you can sometimes get answers by phone), but above all, don't give up, and remember that melanoma does not have to be a death sentence.  Wishing you all the best, and my prayers are with you.

Phyllis 

My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years.  I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III.  The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found.  All contained black pigment, which the doctor said was like melanoma leaving its footprint.  He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.  

I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then.  But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work.  Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum.  I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight. 

Blessings,

Phyllis

My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years.  I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III.  The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found.  All contained black pigment, which the doctor said was like melanoma leaving its footprint.  He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.  

I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then.  But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work.  Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum.  I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight. 

Blessings,

Phyllis

My husband had a complete response to biochemo in 1999, and has remained NED for over 13 years.  I must add that he was not stage IV, but IIIC, but he had nearly 60 positive nodes, both axillary and supraclavicular, so a very aggressive stage III.  The supraclavicular nodes were not removed until after the 2nd round of treatment. He'd had two needle biopsies to confirm that they were melanoma before start of treatment, and after round two, 24 nodes were removed and no viable cancer cells were found.  All contained black pigment, which the doctor said was like melanoma leaving its footprint.  He went on to have 2 more rounds of the treatment, followed by radiation to that area, and we have been blessed to be free of melanoma since.  

I know that biochemo is not used as much as it was at that time, partly I would guess because there are several options now that didn't exist back then.  But I agree with the person who said, when you are stage IV, all options should be on the table, because you just don't know what may work.  Response rates may be low, and the side effects can be brutal (though my husband's experience wasn't as bad as we had feared), but I have heard of other complete responses to biochemo for stage IV patients on this forum.  I'm glad you have found someone willing to be aggressive in fighting the melanoma, and I wish your brother the best in his fight. 

Blessings,

Phyllis

I'm very sorry to hear this.  Kellie Sue approached her situation with such a great attitude, and she was always supportive of others in her posts.  I really hoped she would make it.  I'll keep her family in my prayers.

Phyllis

I'm very sorry to hear this.  Kellie Sue approached her situation with such a great attitude, and she was always supportive of others in her posts.  I really hoped she would make it.  I'll keep her family in my prayers.

Phyllis

I'm very sorry to hear this.  Kellie Sue approached her situation with such a great attitude, and she was always supportive of others in her posts.  I really hoped she would make it.  I'll keep her family in my prayers.

Phyllis

My husband had nearly 50 positive nodes in both axillary and supraclavicular lymph basins.  After 4 rounds of biochemo and 4 weeks of radiation he has remained NED for 12 years (as of Feb).  It is possible to be a long-term survivor after multiple positive nodes.  Praying your current issues are non-melanoma related. 

Phyllis

Interferon was included in the biochemo along with IL2 and 3 chemo drugs.  It was tough, but he got through it, and we're very thankful for the result.  It's all so unpredictable.  So glad that your scans have come back clear so far, and do hope this next will too.  I know the waiting can be terrible, but hang in there.  We'll be praying for you. 

Phyllis

Interferon was included in the biochemo along with IL2 and 3 chemo drugs.  It was tough, but he got through it, and we're very thankful for the result.  It's all so unpredictable.  So glad that your scans have come back clear so far, and do hope this next will too.  I know the waiting can be terrible, but hang in there.  We'll be praying for you. 

Phyllis