I'm truly sorry that your husband was diagnosed with melanoma.  This is a very scary and emotional time for both of you, but please know you're not alone. This is a wonderful support group with highly educated and experienced patients and caregivers.

I too was diagnosed this January with a 22mm nodular melanoma on my back. After entering a clinical trial and doing everything holistic, I advanced to Stage 4 almost 2 months ago.   To make matters worse, I'm only 40, just got married 2.5 years ago and have a 20 month old daughter.  I'm scared, but I'm not going to give in to this melanoma and let it break my spirits.  

This is not the end for your husband.  I know it's so easy to be scared and think the worst, but you need to both try and be optimistic and believe this isn't a death sentence.  First and formost, your husband should be in the care of a melanoma specialist – not a regular oncologist. There are lots of options for treatments available both in clinical trials and first line treatments. Medicine and research is booming right now for this horrible disease and there is hope. Don't be in denial about the reality of this beast, but do seek the advice of a melanoma professional 

Best of luck to you,

Lisa

I'm truly sorry that your husband was diagnosed with melanoma.  This is a very scary and emotional time for both of you, but please know you're not alone. This is a wonderful support group with highly educated and experienced patients and caregivers.

I too was diagnosed this January with a 22mm nodular melanoma on my back. After entering a clinical trial and doing everything holistic, I advanced to Stage 4 almost 2 months ago.   To make matters worse, I'm only 40, just got married 2.5 years ago and have a 20 month old daughter.  I'm scared, but I'm not going to give in to this melanoma and let it break my spirits.  

This is not the end for your husband.  I know it's so easy to be scared and think the worst, but you need to both try and be optimistic and believe this isn't a death sentence.  First and formost, your husband should be in the care of a melanoma specialist – not a regular oncologist. There are lots of options for treatments available both in clinical trials and first line treatments. Medicine and research is booming right now for this horrible disease and there is hope. Don't be in denial about the reality of this beast, but do seek the advice of a melanoma professional 

Best of luck to you,

Lisa

I am so sorry that you guys are dealing with this.  No other way to put…IT SUCKS!!!  Yes, run to the melanoma specialist!  I have been to both and you will see a world of difference.  Best of luck!

I am so sorry that you guys are dealing with this.  No other way to put…IT SUCKS!!!  Yes, run to the melanoma specialist!  I have been to both and you will see a world of difference.  Best of luck!

I believe you ought to get an appointent at a melanoma center because from the sound of it, the doc who did the diagnosis probably was not a melanoma specialist.

From what you mentioned about the scans that he had, it doesn't sound like it's affected any of his major organs and that's a good thing.  

I would also get him an appointment with his primary care physician to get a prescription for medication to help him deal with this. He needs sleep and if his mind is racing, he isn't doing that.

There are other options available besides interferon. Yervoy is a drug that was just recently approved for the treatment of melanoma. There also are clinical trials your husband may qualify for. Which trials he'd qualify for would depend on how he's been staged. This is why you need to get to a melanoma center.

I know that others will chime in with more information.

Hang in there, you will get through this.

Linda

I believe you ought to get an appointent at a melanoma center because from the sound of it, the doc who did the diagnosis probably was not a melanoma specialist.

From what you mentioned about the scans that he had, it doesn't sound like it's affected any of his major organs and that's a good thing.  

I would also get him an appointment with his primary care physician to get a prescription for medication to help him deal with this. He needs sleep and if his mind is racing, he isn't doing that.

There are other options available besides interferon. Yervoy is a drug that was just recently approved for the treatment of melanoma. There also are clinical trials your husband may qualify for. Which trials he'd qualify for would depend on how he's been staged. This is why you need to get to a melanoma center.

I know that others will chime in with more information.

Hang in there, you will get through this.

Linda

You should contact:

Cassian Yee, MD

Dr. Yee is an expert in T cell therapy for the treatment of patients with cancer. Title

• Member, Clinical Research Division, Fred Hutchinson Cancer Research Center
• Professor, Medical Oncology Division, University of Washington School of Medicine

Clinical Expertise

T cell therapy for the treatment of patients with cancer. Immunology, Immunotherapy, Medical Oncology, Melanoma, Bone Marrow Transplantation

Cassian Yee MD

FredHutchinsonCancerResearchCenter

Seattle, WA98109

206 667 6287 voice

206 667 7983 fax

[email protected]

I wish you all the best.

Jimmy B

You should contact:

Cassian Yee, MD

Dr. Yee is an expert in T cell therapy for the treatment of patients with cancer. Title

• Member, Clinical Research Division, Fred Hutchinson Cancer Research Center
• Professor, Medical Oncology Division, University of Washington School of Medicine

Clinical Expertise

T cell therapy for the treatment of patients with cancer. Immunology, Immunotherapy, Medical Oncology, Melanoma, Bone Marrow Transplantation

Cassian Yee MD

FredHutchinsonCancerResearchCenter

Seattle, WA98109

206 667 6287 voice

206 667 7983 fax

[email protected]

I wish you all the best.

Jimmy B

Welcome, welcome, sorry you are here. 

I too have scalp melanoma. Mine was diagnosed December 29, 2009 and I am still here!

You should definitely be seeing a melanoma specialist or have a general oncologist who stays in touch with a melanoma specialist (like me).

Yes, he should have had the neck dissection and taken out all of the nodes in that area. Then you have less to worry about and few chances of a recurrence, like you just had. I don't know if it's too late for that, I would think not.

My personal strategy for cancer : Slice and dice whenever possible. The more tissue you remove and the more nodes you remove, the fewer places for the cancer to grow.  

Be careful what you research online. There are some scary statistics online and some of them are true. Many of them are at least 10 years old and we now have better treatments. So hang in there,hubby, don't give up yet. You are not a statistic. Every stage of every type of cancer has been survived. Fight this monster and don't give up. HOPE is our middle name around here.

I had a wide excision of my scalp tumor, including a large skin graft. Then I tried interferon but didn't last long. 7 months later I had 3 new tumors pop up in the skin graft. Then extensive scalp surgery which resulted in a 14 inch incision snaking around my scalp (called a "flap")  After that I did 29 radiation treatments to the whole scalp in an attempt to prevent more recurrences. I just finished radiation last month and seem to be NED right now (No Evidence Of Disease). Oh, and I just happen to be completely and permanently bald as a result of the radiation. Save soooo much on shampoo!

If you continue to visit this site, I can't promise that you will live longer, but you might! And I can't promise that your journey with the beast will be easier, but I think it will. Here you can laugh and cry and shout and get encouragement and let out all the stuff nobody else will every understand about your situation.

Nicki, Stage 3b BALD IS BEAUTIFUL!

Welcome, welcome, sorry you are here. 

I too have scalp melanoma. Mine was diagnosed December 29, 2009 and I am still here!

You should definitely be seeing a melanoma specialist or have a general oncologist who stays in touch with a melanoma specialist (like me).

Yes, he should have had the neck dissection and taken out all of the nodes in that area. Then you have less to worry about and few chances of a recurrence, like you just had. I don't know if it's too late for that, I would think not.

My personal strategy for cancer : Slice and dice whenever possible. The more tissue you remove and the more nodes you remove, the fewer places for the cancer to grow.  

Be careful what you research online. There are some scary statistics online and some of them are true. Many of them are at least 10 years old and we now have better treatments. So hang in there,hubby, don't give up yet. You are not a statistic. Every stage of every type of cancer has been survived. Fight this monster and don't give up. HOPE is our middle name around here.

I had a wide excision of my scalp tumor, including a large skin graft. Then I tried interferon but didn't last long. 7 months later I had 3 new tumors pop up in the skin graft. Then extensive scalp surgery which resulted in a 14 inch incision snaking around my scalp (called a "flap")  After that I did 29 radiation treatments to the whole scalp in an attempt to prevent more recurrences. I just finished radiation last month and seem to be NED right now (No Evidence Of Disease). Oh, and I just happen to be completely and permanently bald as a result of the radiation. Save soooo much on shampoo!

If you continue to visit this site, I can't promise that you will live longer, but you might! And I can't promise that your journey with the beast will be easier, but I think it will. Here you can laugh and cry and shout and get encouragement and let out all the stuff nobody else will every understand about your situation.

Nicki, Stage 3b BALD IS BEAUTIFUL!

Yes, been there for that worst weekend.   I think most of us here have been there.   And we probably heard the same advice, and didn't take it (I kept researching on the internet and just exhausted myself with fright, unfortunately).   I did get something to help me cope, to stop crying, xanax, which I took sparingly to reduce that emotional chaos (at initial diag March 2005 Stage III, two nodes micromets, left axilla; Oct 05 total LND, no evidence of mel in those nodes!!).   I needed to be able to go in to appts without red eyes and tissues in hand.    This is not the end.   This is part of the journey with melanoma.   Again:  this is not the end.

One step at a time.   Phone calls on Monday.   Where to go for that next appt (I hope someone from your area will offer specific suggestions)   It would seem that a total LND is in line.   A good surgeon, experienced in this.   Then where to go from there, what decisions, after the surgery.    Then seek advice on that and research those options.

    Write random thoughts down now, refine that list if you need to.   So much swirls through your head, but try to redirect to the path of action, not the imaginings.    Allow some time for those imaginings, it's natural to "go there" but the reality of one day, the next day, the next appt—keep focused on that process.

Oh, how I remember hearing all these things and I remember how hard to it was to do–I have to be honest with you.    But I also remember hearing and reading wise words from people on this board.   Take heed of their advice.   Really, this is not the end.   Focus, pen and paper in hand and plan.   Take charge of that.   Once the plan is in place, your husband should feel some control and that is a feeling of relief, that a plan IS in place.   You are not in denial, you are on the verge of a plan to travel through this melanoma web.  

So, if you haven't had enough time, take that time to cry, to wonder, to imagine.   Validate your husband's fears, his imaginings.   But try to redirect the focus to the plan.   Tell him there are many survivors here.   A medical plan will be put in place and that's the next piece of this journey.    God bless and good luck.   This is not the end.   Oh–I did not do interferon either and his efforts in integrative medicine is a good thing!

CarolA-Amherst NY

Stage III since March 2005

Yes, been there for that worst weekend.   I think most of us here have been there.   And we probably heard the same advice, and didn't take it (I kept researching on the internet and just exhausted myself with fright, unfortunately).   I did get something to help me cope, to stop crying, xanax, which I took sparingly to reduce that emotional chaos (at initial diag March 2005 Stage III, two nodes micromets, left axilla; Oct 05 total LND, no evidence of mel in those nodes!!).   I needed to be able to go in to appts without red eyes and tissues in hand.    This is not the end.   This is part of the journey with melanoma.   Again:  this is not the end.

One step at a time.   Phone calls on Monday.   Where to go for that next appt (I hope someone from your area will offer specific suggestions)   It would seem that a total LND is in line.   A good surgeon, experienced in this.   Then where to go from there, what decisions, after the surgery.    Then seek advice on that and research those options.

    Write random thoughts down now, refine that list if you need to.   So much swirls through your head, but try to redirect to the path of action, not the imaginings.    Allow some time for those imaginings, it's natural to "go there" but the reality of one day, the next day, the next appt—keep focused on that process.

Oh, how I remember hearing all these things and I remember how hard to it was to do–I have to be honest with you.    But I also remember hearing and reading wise words from people on this board.   Take heed of their advice.   Really, this is not the end.   Focus, pen and paper in hand and plan.   Take charge of that.   Once the plan is in place, your husband should feel some control and that is a feeling of relief, that a plan IS in place.   You are not in denial, you are on the verge of a plan to travel through this melanoma web.  

So, if you haven't had enough time, take that time to cry, to wonder, to imagine.   Validate your husband's fears, his imaginings.   But try to redirect the focus to the plan.   Tell him there are many survivors here.   A medical plan will be put in place and that's the next piece of this journey.    God bless and good luck.   This is not the end.   Oh–I did not do interferon either and his efforts in integrative medicine is a good thing!

CarolA-Amherst NY

Stage III since March 2005

I'm sorry you've had to join us.  Your husband is in an unfortunately fairly unique position having 2 cancers. He has to go to a Dr that either understands both cancers or is willing to openly converse with his other specialist. 

There is a women, Marilyn, who does not frequent this board anymore. She is stage IV mel and I believe stage 2 lymphoma.  Clear from the mel in her lungs for over 5 years now and I believe clear from the lymphoma for 2 years.  If you want, I can e-mail her and have her contact you.  She doesn't come to the board anymore except for an occasional check in because she is off living life.

Everything is new to your husband with this recurrance and it's totally normal for him to be feeling this way!  He is doubting everything he has done and scared. Talking to someone who is knowledgable, making a plan, and time will totally help. 

On Monday, call a specialist in melanoma but make sure that they understand about the lymphoma before you make an appointment. Anotherwords, find the right Dr for your husbands situation.

Let us know, meanwhile do something fun today and don't stay in the house. Keeping busy is key when having to wait for that plan.

Linda

Stage IV since 06  NED (no evidence of disease ) for 3 weeks, radiation starts tomorrow

I'm sorry you've had to join us.  Your husband is in an unfortunately fairly unique position having 2 cancers. He has to go to a Dr that either understands both cancers or is willing to openly converse with his other specialist. 

There is a women, Marilyn, who does not frequent this board anymore. She is stage IV mel and I believe stage 2 lymphoma.  Clear from the mel in her lungs for over 5 years now and I believe clear from the lymphoma for 2 years.  If you want, I can e-mail her and have her contact you.  She doesn't come to the board anymore except for an occasional check in because she is off living life.

Everything is new to your husband with this recurrance and it's totally normal for him to be feeling this way!  He is doubting everything he has done and scared. Talking to someone who is knowledgable, making a plan, and time will totally help. 

On Monday, call a specialist in melanoma but make sure that they understand about the lymphoma before you make an appointment. Anotherwords, find the right Dr for your husbands situation.

Let us know, meanwhile do something fun today and don't stay in the house. Keeping busy is key when having to wait for that plan.

Linda

Stage IV since 06  NED (no evidence of disease ) for 3 weeks, radiation starts tomorrow

I live in LO and my husband has Stage 3b MM… I'm a nurse at Legacy Meridian Park. We went to UW for a second opinion.  Currently being treated by Dr Brendan Curti at Prov Pdx.  We're very happy with the care and facility. He researches 3 days a week and sees patients 2 days.  Very much up to date on Melanoma tx and trials.  If you want to talk to me feel free to email.  [email protected]

Kelly

I live in LO and my husband has Stage 3b MM… I'm a nurse at Legacy Meridian Park. We went to UW for a second opinion.  Currently being treated by Dr Brendan Curti at Prov Pdx.  We're very happy with the care and facility. He researches 3 days a week and sees patients 2 days.  Very much up to date on Melanoma tx and trials.  If you want to talk to me feel free to email.  [email protected]

Kelly

I just answered Bruce, a few posts below yours.  Perhaps you might care to read my post to him.  It will give you an option of contacting NIH, Dr. Rosenberg if you'd like.  Do not wait at this point to do something positive.  You can reach me at [email protected]

I just answered Bruce, a few posts below yours.  Perhaps you might care to read my post to him.  It will give you an option of contacting NIH, Dr. Rosenberg if you'd like.  Do not wait at this point to do something positive.  You can reach me at [email protected]

LDH is usually used in stage 4 melanoma as a tool to find out if melanoma has spread to the liver and other areas …its a sign that  some major organ damage is done… Many people even with Stage 4 Melanoma have normal LDH levels. LDH is also subjective because vitamin C and other factors can lower it.

LDH is usually used in stage 4 melanoma as a tool to find out if melanoma has spread to the liver and other areas …its a sign that  some major organ damage is done… Many people even with Stage 4 Melanoma have normal LDH levels. LDH is also subjective because vitamin C and other factors can lower it.