Desmoplastic Neurotropic Spindle Cell Melanoma

Hello out there --

Is there anyone out there who has been diagnosed with desmoplastic neurotropic spindle cell melanoma?  My mother was diagnosed with this rare form of melanoma in 2006 with a large, very benign-looking growth on  her nose.  She was originally told the biopsy results showed it was benign. However, further testing (I guess the usual protocol for certain skin growths?) revealed that it was anything but even if it LOOKED totally benign.  She had the tumor removed along with 70 lymph nodes in her neck, five of which were diseased.  So she was in stage 3.  Three months after the surgery, she had a recurrence, again on her nose.  The cancer also appeared in her parotid gland.  She had more surgery (this past July) to remove the recurrent nose growth and also had a partial parotidectomy....She recently began immunotherapy -- leukine -- in the hopes of slowing down this monster. 

Since it's so rare (about 4% of humans on the planet have ever been diagnosed with it I believe) and although she is being treated as if she has the usual, everyday melanoma, it would help my mom and my family to learn as much as we can about this form or hear from anyone who has it.  We know that it has a bad rap.  But we've also read that if it spreads, it's known to do so locally or regionally which gives us hope.  Of course, it's hard to really know when it comes to cancer and melanoma but, we'd very much like to hear from anyone who has this form or who can offer some info....

She just finished her first round of leukine -- two weeks on -- and she's now in the two weeks off period.  She's doing very well thus far. 

Thank you very much. 

Tulip

 

 

Hi tulip.
My son (26)had a lump under his neck which was causing his arm to spasm and significant pain. Doctors weren't too concerned and put him on the waiting list to have it removed.

6 months later after continually chasing them for surgery they finally removed it. 2 days later, it was a different story..they couldn't have taken it more seriously. Desmoplastic neurotropic melanoma. They did further surgery to excise an area from neck to shoulder and also the first few lymph nodes in his armpit. They found that it had spread and did further surgery to remove all the lymph nodes. He is due to start interferon treatment Monday 5th November. I live 500 kms away and feel am on road constantly travelling to and fro. He lives alone and has no support where he lives. It is going to be a hard road for him. The hospital social workers seem to be working very hard for him, for which I am very grateful.

I am very worried about the interferon treatment having heard some horrific stories of the depression it can cause. He has already had treatment for this in the past. The panel that is looking after him assures us that this is his best chance for a good outcome, so he has said that this is what he is going to do.

Like you I have found it harder to find material that relates to this form because it is such a rare melanoma..there is not a designated treatment.

Good luck with your mother and will pass on any more information that I come in contact with.

cinders

 

On 11/2/2007 cinders wrote:

Hi tulip.
My son (26)had a lump under his neck which was causing his arm to spasm and significant pain. Doctors weren't too concerned and put him on the waiting list to have it removed.

6 months later after continually chasing them for surgery they finally removed it. 2 days later, it was a different story..they couldn't have taken it more seriously. Desmoplastic neurotropic melanoma. They did further surgery to excise an area from neck to shoulder and also the first few lymph nodes in his armpit. They found that it had spread and did further surgery to remove all the lymph nodes. He is due to start interferon treatment Monday 5th November. I live 500 kms away and feel am on road constantly travelling to and fro. He lives alone and has no support where he lives. It is going to be a hard road for him. The hospital social workers seem to be working very hard for him, for which I am very grateful.

I am very worried about the interferon treatment having heard some horrific stories of the depression it can cause. He has already had treatment for this in the past. The panel that is looking after him assures us that this is his best chance for a good outcome, so he has said that this is what he is going to do.

Like you I have found it harder to find material that relates to this form because it is such a rare melanoma..there is not a designated treatment.

Good luck with your mother and will pass on any more information that I come in contact with.

cinders

Hi Cinders --

Thanks so much for your note.  I haven't checked the board lately since there had been no replies and I was beginning to think there never would be.  And now, alas, there is one, unfortunately for you but comforting for me. 

So sorry to hear about your son. My mom was considering doing interferon but was later advised not to, due to the side effects.  She is a depressive to begin with and the flu-like side effects, tiredness, and all that would just exacerbate the depressive aspects.  Don't know if it causes depression or if the side effects of feeling lousy bring it on.  Anyway, she has been doing leukine and is faring well.  Have you and/or your son considered trying leukine instead?  The only side effects my mom is experiencing now are soreness/itchiness at the injection sites and some tiredness.  Other than that, she feels well.

I should add that, none-the-less she noticed a lump under her skin in her jawline area which, within almost two weeks, disappeared (!).  When I heard this, I was thrilled!  But then she mentioned another lump on the other side in her neck area and my hopes got dashed again.  She had a PET scan which showed no activity in either area!  Up went my hope....and then down it came again when the scan showed suspicious activity in her sacrum. 

So now she goes for an MRI to determine if this is what we all fear.  It's all very strange, especially since we were all thinking that for sure whatever the lump was in her neck was going to be another recurrence.  I was prepared to hear this, and certainly not about the sacrum.  Now we wait to see what the MRI reveals.  There is a tiny chance that it is not a metastatic tumor but it's not likely.  But who knows?  This leukine just might zap it, the way it appears to have zapped the lump in her jaw area.  The lump in her neck is still there but oddly did not show up in the PET scan....so it's all rather mysterious.

Will keep you posted. 

Perhaps you/your son might want to reconsider the leukine treatment?  It seems to me from what I've heard/read that it just might be as effective as interferon but without the nasty side effects.  My mom's doctors have said that interferon is only effective in 20% of cases.  Your son just may be one of the lucky 20 percenters....it's all a crapshoot really.  Positive thinking and god knows what else... with cancer, everyone is so different that you just never know and sometimes you just can't go by statistics...

I too am trying to figure out what to do about my mom.  She lives 1000 miles away...fortunately she lives with my stepfather but I still feel like I want to be there for her....it's hard to know what to do......

Please let me know how things are going and good luck with it all.  I too will let you know of any info I uncover....

Tulip 

 

   

 

 

On 11/18/2007 Tulip wrote:

 

On 11/2/2007 cinders wrote:

Hi tulip.
My son (26)had a lump under his neck which was causing his arm to spasm and significant pain. Doctors weren't too concerned and put him on the waiting list to have it removed.

6 months later after continually chasing them for surgery they finally removed it. 2 days later, it was a different story..they couldn't have taken it more seriously. Desmoplastic neurotropic melanoma. They did further surgery to excise an area from neck to shoulder and also the first few lymph nodes in his armpit. They found that it had spread and did further surgery to remove all the lymph nodes. He is due to start interferon treatment Monday 5th November. I live 500 kms away and feel am on road constantly travelling to and fro. He lives alone and has no support where he lives. It is going to be a hard road for him. The hospital social workers seem to be working very hard for him, for which I am very grateful.

I am very worried about the interferon treatment having heard some horrific stories of the depression it can cause. He has already had treatment for this in the past. The panel that is looking after him assures us that this is his best chance for a good outcome, so he has said that this is what he is going to do.

Like you I have found it harder to find material that relates to this form because it is such a rare melanoma..there is not a designated treatment.

Good luck with your mother and will pass on any more information that I come in contact with.

cinders

Hi Cinders --

Thanks so much for your note.  I haven't checked the board lately since there had been no replies and I was beginning to think there never would be.  And now, alas, there is one, unfortunately for you but comforting for me. 

So sorry to hear about your son. My mom was considering doing interferon but was later advised not to, due to the side effects.  She is a depressive to begin with and the flu-like side effects, tiredness, and all that would just exacerbate the depressive aspects.  Don't know if it causes depression or if the side effects of feeling lousy bring it on.  Anyway, she has been doing leukine and is faring well.  Have you and/or your son considered trying leukine instead?  The only side effects my mom is experiencing now are soreness/itchiness at the injection sites and some tiredness.  Other than that, she feels well.

I should add that, none-the-less she noticed a lump under her skin in her jawline area which, within almost two weeks, disappeared (!).  When I heard this, I was thrilled!  But then she mentioned another lump on the other side in her neck area and my hopes got dashed again.  She had a PET scan which showed no activity in either area!  Up went my hope....and then down it came again when the scan showed suspicious activity in her sacrum. 

So now she goes for an MRI to determine if this is what we all fear.  It's all very strange, especially since we were all thinking that for sure whatever the lump was in her neck was going to be another recurrence.  I was prepared to hear this, and certainly not about the sacrum.  Now we wait to see what the MRI reveals.  There is a tiny chance that it is not a metastatic tumor but it's not likely.  But who knows?  This leukine just might zap it, the way it appears to have zapped the lump in her jaw area.  The lump in her neck is still there but oddly did not show up in the PET scan....so it's all rather mysterious.

Will keep you posted. 

Perhaps you/your son might want to reconsider the leukine treatment?  It seems to me from what I've heard/read that it just might be as effective as interferon but without the nasty side effects.  My mom's doctors have said that interferon is only effective in 20% of cases.  Your son just may be one of the lucky 20 percenters....it's all a crapshoot really.  Positive thinking and god knows what else... with cancer, everyone is so different that you just never know and sometimes you just can't go by statistics...

I too am trying to figure out what to do about my mom.  She lives 1000 miles away...fortunately she lives with my stepfather but I still feel like I want to be there for her....it's hard to know what to do......

Please let me know how things are going and good luck with it all.  I too will let you know of any info I uncover....

Tulip 

 

Hi Tulip,

 

My husband was diagnosed with DNM in June of 07.  Two yrs earlier He had a spot on the crown of his head.  It was removed and we were told that it was a sarcoma.  The docs told us it was all taken care of and not to worry.  Then 2 yrs later He had been at work and called and said something was wrong that he could walk straight, he was dizzy with a raging headache.  I took him to the ER.  within an hour we were told he had metastatic brain cancer and on the way to a larger hospital.   That is where we actually had found out this was the same cancer he had in 05.  My husband died just shy of 6 mos. after.   I am now looking to net work with other people who have had this or going thru this type of cancer.  I hope to find some kind of peace by doing so.

 Thank you, Davids wife

 

 

On 4/5/2008 Davidswife wrote:

 

On 11/18/2007 Tulip wrote:

 

On 11/2/2007 cinders wrote:

Hi tulip.
My son (26)had a lump under his neck which was causing his arm to spasm and significant pain. Doctors weren't too concerned and put him on the waiting list to have it removed.

6 months later after continually chasing them for surgery they finally removed it. 2 days later, it was a different story..they couldn't have taken it more seriously. Desmoplastic neurotropic melanoma. They did further surgery to excise an area from neck to shoulder and also the first few lymph nodes in his armpit. They found that it had spread and did further surgery to remove all the lymph nodes. He is due to start interferon treatment Monday 5th November. I live 500 kms away and feel am on road constantly travelling to and fro. He lives alone and has no support where he lives. It is going to be a hard road for him. The hospital social workers seem to be working very hard for him, for which I am very grateful.

I am very worried about the interferon treatment having heard some horrific stories of the depression it can cause. He has already had treatment for this in the past. The panel that is looking after him assures us that this is his best chance for a good outcome, so he has said that this is what he is going to do.

Like you I have found it harder to find material that relates to this form because it is such a rare melanoma..there is not a designated treatment.

Good luck with your mother and will pass on any more information that I come in contact with.

cinders

Hi Cinders --

Thanks so much for your note.  I haven't checked the board lately since there had been no replies and I was beginning to think there never would be.  And now, alas, there is one, unfortunately for you but comforting for me. 

So sorry to hear about your son. My mom was considering doing interferon but was later advised not to, due to the side effects.  She is a depressive to begin with and the flu-like side effects, tiredness, and all that would just exacerbate the depressive aspects.  Don't know if it causes depression or if the side effects of feeling lousy bring it on.  Anyway, she has been doing leukine and is faring well.  Have you and/or your son considered trying leukine instead?  The only side effects my mom is experiencing now are soreness/itchiness at the injection sites and some tiredness.  Other than that, she feels well.

I should add that, none-the-less she noticed a lump under her skin in her jawline area which, within almost two weeks, disappeared (!).  When I heard this, I was thrilled!  But then she mentioned another lump on the other side in her neck area and my hopes got dashed again.  She had a PET scan which showed no activity in either area!  Up went my hope....and then down it came again when the scan showed suspicious activity in her sacrum. 

So now she goes for an MRI to determine if this is what we all fear.  It's all very strange, especially since we were all thinking that for sure whatever the lump was in her neck was going to be another recurrence.  I was prepared to hear this, and certainly not about the sacrum.  Now we wait to see what the MRI reveals.  There is a tiny chance that it is not a metastatic tumor but it's not likely.  But who knows?  This leukine just might zap it, the way it appears to have zapped the lump in her jaw area.  The lump in her neck is still there but oddly did not show up in the PET scan....so it's all rather mysterious.

Will keep you posted. 

Perhaps you/your son might want to reconsider the leukine treatment?  It seems to me from what I've heard/read that it just might be as effective as interferon but without the nasty side effects.  My mom's doctors have said that interferon is only effective in 20% of cases.  Your son just may be one of the lucky 20 percenters....it's all a crapshoot really.  Positive thinking and god knows what else... with cancer, everyone is so different that you just never know and sometimes you just can't go by statistics...

I too am trying to figure out what to do about my mom.  She lives 1000 miles away...fortunately she lives with my stepfather but I still feel like I want to be there for her....it's hard to know what to do......

Please let me know how things are going and good luck with it all.  I too will let you know of any info I uncover....

Tulip 

 

Hi Tulip,

 

My husband was diagnosed with DNM in June of 07.  Two yrs earlier He had a spot on the crown of his head.  It was removed and we were told that it was a sarcoma.  The docs told us it was all taken care of and not to worry.  Then 2 yrs later He had been at work and called and said something was wrong that he could walk straight, he was dizzy with a raging headache.  I took him to the ER.  within an hour we were told he had metastatic brain cancer and on the way to a larger hospital.   That is where we actually had found out this was the same cancer he had in 05.  My husband died just shy of 6 mos. after.   I am now looking to net work with other people who have had this or going thru this type of cancer.  I hope to find some kind of peace by doing so.

 Thank you, Davids wife

Hi   - i have just been told that i have a desmoplastic neurotropic melanoma  - on my right arm - I am currently waiting to have it further excised and am trying to find out more info on treatment etc.    My doctor at the oncology ward has not sent me for any scans as he said that it is unlikely to show up anything?!   He said that a sentinel lymph node biopsy is the best way to know if it has spread.  However in some readings it has said that this is not the case - so I am totally confused.       The hardest part is actually waiting for the surgery and thinking that whatever you are doing could make it spread!

Would be greatful for any recommendations?

Thanks

Jo 

 

 

Hi, I read somewhere that sometimes with DNM they will radiate the area before excising the cancer.  Do ;you live in a big or small town?  Have you heard of the cancer treatment center of america?  I chatted on line to them a couple of times.  They could be beneficial to you.  The best thing to do Is keep your options open and do lots of research and most importantly get another opinion or two.  Good luck to you.  If you dont mind me asking,  are you M or F, and how old are you?  my husband was a very young and healthy 62.

 

thanks, DAvidswife

Hi David'swife,

Thanks for your reply.

I'm 43, female and living in Australia.  Going to the Princess Alexandra In Brisbane which I have been told is the 2nd best to Sydney.    There doesn't appear to be too many different places that you can actually go to.

 Without knowing how the snl biopsy will turn out - it is hard trying to uncover the best course of action to take.  At this point think will just wait for the operation and skin graft and hope to just come out of that ok.