Clinical Trial has been recommended for me……scared…..

http://theoncologist.alphamedpress.org/content/10/9/739.full

http://theoncologist.alphamedpress.org/content/10/9/739.full

http://theoncologist.alphamedpress.org/content/10/9/739.full

Hello – 

I'm following along since I was just last week diagnosed with metastatic melanoma in my right armpit. I have had no skin issues that I'm aware of. I go on Friday to get staged and develope a treatment plan.

I see in your profile that you are Stage 2. I thought that if it is in your lymph node(s), you are Stage 3 or 4. Is that not correct?

I wish I could help you on your original questions, but I'm a new player to this game!

Thank you!

Sheila

Hello – 

I'm following along since I was just last week diagnosed with metastatic melanoma in my right armpit. I have had no skin issues that I'm aware of. I go on Friday to get staged and develope a treatment plan.

I see in your profile that you are Stage 2. I thought that if it is in your lymph node(s), you are Stage 3 or 4. Is that not correct?

I wish I could help you on your original questions, but I'm a new player to this game!

Thank you!

Sheila

Hello – 

I'm following along since I was just last week diagnosed with metastatic melanoma in my right armpit. I have had no skin issues that I'm aware of. I go on Friday to get staged and develope a treatment plan.

I see in your profile that you are Stage 2. I thought that if it is in your lymph node(s), you are Stage 3 or 4. Is that not correct?

I wish I could help you on your original questions, but I'm a new player to this game!

Thank you!

Sheila

Hi Liz,

i was diagnosed stage IIIa with mets in the lymph nodes of my left groin.  I,had the lymph node dissection and passed on the Interferon (the data in my view didn't support this as an option for me).  I also went for a second opinion.  If you're unsure perhaps that's an option you can pursue.  Also, try to make sure that you're going to a facility that specializes in Melano a….maybe CTCA does, but if not, you may want to consider finding such a facility.

regards,

SA

Hi Liz,

i was diagnosed stage IIIa with mets in the lymph nodes of my left groin.  I,had the lymph node dissection and passed on the Interferon (the data in my view didn't support this as an option for me).  I also went for a second opinion.  If you're unsure perhaps that's an option you can pursue.  Also, try to make sure that you're going to a facility that specializes in Melano a….maybe CTCA does, but if not, you may want to consider finding such a facility.

regards,

SA

Hi Liz,

i was diagnosed stage IIIa with mets in the lymph nodes of my left groin.  I,had the lymph node dissection and passed on the Interferon (the data in my view didn't support this as an option for me).  I also went for a second opinion.  If you're unsure perhaps that's an option you can pursue.  Also, try to make sure that you're going to a facility that specializes in Melano a….maybe CTCA does, but if not, you may want to consider finding such a facility.

regards,

SA

Hi Liz,

Is your oncologist a melanoma specialist? Or perhaps the same oncologist you had for your breast cancer? If not a melanoma specialist, I would highly recommend you get one. It is pretty much widely accepted that Interferon does not significantly improve your overall chances of survival, and as you have pointed out, it is a rough treatment.

I do know that when I was first diagnosed, my oncologist at the time recommended the same thing (the Interferon that is, he did not recommend radiation). As providence would have it I was lucky to navigate my way to an oncologist that specialized in melanoma, and she did not recommend it.

Luckily for you, you have found this bulletin board which has a bunch of us that understand what you are going through and can also share our experiences with you.

– Paul.

Hi Liz,

Is your oncologist a melanoma specialist? Or perhaps the same oncologist you had for your breast cancer? If not a melanoma specialist, I would highly recommend you get one. It is pretty much widely accepted that Interferon does not significantly improve your overall chances of survival, and as you have pointed out, it is a rough treatment.

I do know that when I was first diagnosed, my oncologist at the time recommended the same thing (the Interferon that is, he did not recommend radiation). As providence would have it I was lucky to navigate my way to an oncologist that specialized in melanoma, and she did not recommend it.

Luckily for you, you have found this bulletin board which has a bunch of us that understand what you are going through and can also share our experiences with you.

– Paul.

Hi Liz,

Is your oncologist a melanoma specialist? Or perhaps the same oncologist you had for your breast cancer? If not a melanoma specialist, I would highly recommend you get one. It is pretty much widely accepted that Interferon does not significantly improve your overall chances of survival, and as you have pointed out, it is a rough treatment.

I do know that when I was first diagnosed, my oncologist at the time recommended the same thing (the Interferon that is, he did not recommend radiation). As providence would have it I was lucky to navigate my way to an oncologist that specialized in melanoma, and she did not recommend it.

Luckily for you, you have found this bulletin board which has a bunch of us that understand what you are going through and can also share our experiences with you.

– Paul.

Hi Liz-

I was diagnosed Stage III in 2011. Like Paul said, I found an oncologist who specialized in melanoma…that's all he did and has done for many years. Not a national expert but there are regional experts who are knowledgable and tied in to all aspects of melanoma. When I asked about Interferon, he shook his head and said I wouldn't do that to you unless I felt it would help…point being the risk/reward wasn't great enough and honeslty I don't think he believes in it. It's a personal choice and I know the feeling of wanting to do "something" but talk to those who have…there are quite a few here that will speak up about their experiences.

Best

Josh

Hi Liz-

I was diagnosed Stage III in 2011. Like Paul said, I found an oncologist who specialized in melanoma…that's all he did and has done for many years. Not a national expert but there are regional experts who are knowledgable and tied in to all aspects of melanoma. When I asked about Interferon, he shook his head and said I wouldn't do that to you unless I felt it would help…point being the risk/reward wasn't great enough and honeslty I don't think he believes in it. It's a personal choice and I know the feeling of wanting to do "something" but talk to those who have…there are quite a few here that will speak up about their experiences.

Best

Josh

Hi Liz-

I was diagnosed Stage III in 2011. Like Paul said, I found an oncologist who specialized in melanoma…that's all he did and has done for many years. Not a national expert but there are regional experts who are knowledgable and tied in to all aspects of melanoma. When I asked about Interferon, he shook his head and said I wouldn't do that to you unless I felt it would help…point being the risk/reward wasn't great enough and honeslty I don't think he believes in it. It's a personal choice and I know the feeling of wanting to do "something" but talk to those who have…there are quite a few here that will speak up about their experiences.

Best

Josh

Hi Liz – I felt compelled to respond as your story is so close to mine.  Breast cancer (estrogen positive) in 2003 followed by surgery, chemo, radiation.  Melanoma found in a lymph node in my parotid gland in 2005. No primary and a pet/ct was clear.  Complete lymph node dissection followed by 1 month hd interferon and 6 months of low dose.  Of course, those were the olden days before we determined that interferon did not affect recurrance.  I have been NED ever since but I think I would have been  even if I hadn't done interferon.  The long term effects for me have been mental and physical fatigue.

I think in my case my body fought off the primary.  I went to my pcp about a year before my breast cancer diagnosis with huge lymph nodes in my neck.  He shrugged and said I was fighting something.  I should have persued it given that I spent a lot of time on the Jersey shore as a kid when blistering sunburns were a sign of toughness.  My guess is the chemo after that allowed the melanoma cells to return but again, my immune system took over.

Everyone has to make his/her own decision but the evidence is mounting that interferon is not effective. Find a melanoma specialist to work with.  If you do decide to do interferon then don't look back.  The effects are different for every person.  I hope knowing that I'm still around gives you some comfort.  Those early days after diagnosis are awful.  

Fen

Hi Liz – I felt compelled to respond as your story is so close to mine.  Breast cancer (estrogen positive) in 2003 followed by surgery, chemo, radiation.  Melanoma found in a lymph node in my parotid gland in 2005. No primary and a pet/ct was clear.  Complete lymph node dissection followed by 1 month hd interferon and 6 months of low dose.  Of course, those were the olden days before we determined that interferon did not affect recurrance.  I have been NED ever since but I think I would have been  even if I hadn't done interferon.  The long term effects for me have been mental and physical fatigue.

I think in my case my body fought off the primary.  I went to my pcp about a year before my breast cancer diagnosis with huge lymph nodes in my neck.  He shrugged and said I was fighting something.  I should have persued it given that I spent a lot of time on the Jersey shore as a kid when blistering sunburns were a sign of toughness.  My guess is the chemo after that allowed the melanoma cells to return but again, my immune system took over.

Everyone has to make his/her own decision but the evidence is mounting that interferon is not effective. Find a melanoma specialist to work with.  If you do decide to do interferon then don't look back.  The effects are different for every person.  I hope knowing that I'm still around gives you some comfort.  Those early days after diagnosis are awful.  

Fen

Hi Liz – I felt compelled to respond as your story is so close to mine.  Breast cancer (estrogen positive) in 2003 followed by surgery, chemo, radiation.  Melanoma found in a lymph node in my parotid gland in 2005. No primary and a pet/ct was clear.  Complete lymph node dissection followed by 1 month hd interferon and 6 months of low dose.  Of course, those were the olden days before we determined that interferon did not affect recurrance.  I have been NED ever since but I think I would have been  even if I hadn't done interferon.  The long term effects for me have been mental and physical fatigue.

I think in my case my body fought off the primary.  I went to my pcp about a year before my breast cancer diagnosis with huge lymph nodes in my neck.  He shrugged and said I was fighting something.  I should have persued it given that I spent a lot of time on the Jersey shore as a kid when blistering sunburns were a sign of toughness.  My guess is the chemo after that allowed the melanoma cells to return but again, my immune system took over.

Everyone has to make his/her own decision but the evidence is mounting that interferon is not effective. Find a melanoma specialist to work with.  If you do decide to do interferon then don't look back.  The effects are different for every person.  I hope knowing that I'm still around gives you some comfort.  Those early days after diagnosis are awful.  

Fen

Liz,

Personally, I see no reason to go into a trial for Interferon. Interferon is old news and the data never really found much (if any) benefit. Althought the side effects would vary individual to individual, I strongly believe that the cost of those side effects is higher than any potential benefit from the Interferon.

Assuming you are NED after surgery, watch and wait is clearly an option. There are other trials out there of more promising drugs that you could consider as well if you feel strongly about adjuvant therapy. I recommend seeing a melanoma specialist as treatments continue to evolve quickly and they will stay current.

Kevin 

Liz,

Personally, I see no reason to go into a trial for Interferon. Interferon is old news and the data never really found much (if any) benefit. Althought the side effects would vary individual to individual, I strongly believe that the cost of those side effects is higher than any potential benefit from the Interferon.

Assuming you are NED after surgery, watch and wait is clearly an option. There are other trials out there of more promising drugs that you could consider as well if you feel strongly about adjuvant therapy. I recommend seeing a melanoma specialist as treatments continue to evolve quickly and they will stay current.

Kevin 

Liz,

Personally, I see no reason to go into a trial for Interferon. Interferon is old news and the data never really found much (if any) benefit. Althought the side effects would vary individual to individual, I strongly believe that the cost of those side effects is higher than any potential benefit from the Interferon.

Assuming you are NED after surgery, watch and wait is clearly an option. There are other trials out there of more promising drugs that you could consider as well if you feel strongly about adjuvant therapy. I recommend seeing a melanoma specialist as treatments continue to evolve quickly and they will stay current.

Kevin 

Find a new oncologist.

This one is a danger to your future health and well being.

Interferon doesnt work and is highly toxic.

Find a new oncologist.

This one is a danger to your future health and well being.

Interferon doesnt work and is highly toxic.

Find a new oncologist.

This one is a danger to your future health and well being.

Interferon doesnt work and is highly toxic.