Where to go and Who to see?

It sounds to me like your Dad is Stage 3 right now, but because he had a deep melanoma, they are assuming it has spread internally.  There are several people who've had deep melanoma's who are still NED, so I find it unfair that they're classifying your Dad as Stage 4 when his scans were clear.  That being said, perhaps your Dad can enter into an adjuvent clinical trial with ipi so that his cancer remains under control.

You are right, Stage 4 is when the cancer has spread to distant lymph nodes and organs.

Best of luck to your Dad.

Lisa – Stage 4

It sounds to me like your Dad is Stage 3 right now, but because he had a deep melanoma, they are assuming it has spread internally.  There are several people who've had deep melanoma's who are still NED, so I find it unfair that they're classifying your Dad as Stage 4 when his scans were clear.  That being said, perhaps your Dad can enter into an adjuvent clinical trial with ipi so that his cancer remains under control.

You are right, Stage 4 is when the cancer has spread to distant lymph nodes and organs.

Best of luck to your Dad.

Lisa – Stage 4

I am wondering if you may be getting the stage and the Clark Level confused.  It is a very common mistake.  You are correct about stage 4 being defined as a distant spread.  And as far as the second tumor goes, I am really unsure if it was a spread or a new primary from what you wrote, though that close it is certainly suspect.  But if you father had a wide excision on the first tumor, the secom one was actually a bit further than 2 cm, it was just pulled closer ….if that makes sense. 

Has your dad had an MRI?  I would think that would be much better considering the location of the tumor.  Is someone with your dad? Are you getting this information second hand?  What kind of depth are you talking about for each of the tumors? 

Sorry for all the questions but it will be impossible for anyone to intelligently answer your questions without details.  The best they can do it refer you to the clinical trial site on this web site and at .gov. 

I am wondering if you may be getting the stage and the Clark Level confused.  It is a very common mistake.  You are correct about stage 4 being defined as a distant spread.  And as far as the second tumor goes, I am really unsure if it was a spread or a new primary from what you wrote, though that close it is certainly suspect.  But if you father had a wide excision on the first tumor, the secom one was actually a bit further than 2 cm, it was just pulled closer ….if that makes sense. 

Has your dad had an MRI?  I would think that would be much better considering the location of the tumor.  Is someone with your dad? Are you getting this information second hand?  What kind of depth are you talking about for each of the tumors? 

Sorry for all the questions but it will be impossible for anyone to intelligently answer your questions without details.  The best they can do it refer you to the clinical trial site on this web site and at .gov. 

I'm sorry that you've had to join us, but I hope we can give yu our experiences so that you can ask more questions.

When I had my first recurrance it was deep under the first primary on my breast. I was told it was stage IV. At the time my oncologist could not totally explain so I could understand why I was stage IV and figured it was because they could then fit me into the trial they had. My derm told me I was 3 B and it was a lot easier to swallow at the time.  Later a melanoma specialist explained to me the staging was because of the deepness of the primary (mine was not in a lymph node). I was below all of the levels of skin and was not involving the skin. Once it went to the bladder I had no choice but to accept the staging.  Ask the Doctors to explain why it is stage IV.

If stage IV there are only a few trials out there if you are NED (no evidence of disease). There is an anti-pd trial but your dad would have to have a postive hla 0201 factor and I think it's only at Moffitt with Dr Weber. This is a blood test to determine the hla factor.  There is also another trial (I know that Kirkwood has this one) that is Ippi in one arm at 10mg given every 3 weeks for 4 infusions and then after that 1 infusion every 3 months. The other arm is interfuron. Since your dad was on interfuron he would not be eligible.  I don't think there are any other trials out there. I'm in the same predicament. I went to stage IV in 06 and have now had 7 metastices since then. I have chosen to go the surgical route, this last time they cleaned up the nerve area with radiation. 

Dr Kirkwood does prescribe leukine (at least he was in the past). It hasn't proven to be statistically helpful but some have felt that it has helped them. 

Once you have a recurrance it really doesn't matter how deep the primary melanoma was. Staging and prognosis is based on the most severe.  Other drugs such as Ippi, IL2 and the Braf drugs were FDA approved to be given with measurable disease (at least that's how it's been explained to me).  I've been on leukine in a trial for1 year. Otherwise I've done watch and wait and for some of us it does work.

Ask questions and make the Doctors explain. Keep a tangible record of all pathology reports and all scans. Get the scans copied on CD's or DVD's. That way you can go to different Doctors and have the materials needed at hand.  I would think that Pittsburg would want to re-read the latest pathology from your dad's latest surgery.

Let us know what happens,

Linda

I'm sorry that you've had to join us, but I hope we can give yu our experiences so that you can ask more questions.

When I had my first recurrance it was deep under the first primary on my breast. I was told it was stage IV. At the time my oncologist could not totally explain so I could understand why I was stage IV and figured it was because they could then fit me into the trial they had. My derm told me I was 3 B and it was a lot easier to swallow at the time.  Later a melanoma specialist explained to me the staging was because of the deepness of the primary (mine was not in a lymph node). I was below all of the levels of skin and was not involving the skin. Once it went to the bladder I had no choice but to accept the staging.  Ask the Doctors to explain why it is stage IV.

If stage IV there are only a few trials out there if you are NED (no evidence of disease). There is an anti-pd trial but your dad would have to have a postive hla 0201 factor and I think it's only at Moffitt with Dr Weber. This is a blood test to determine the hla factor.  There is also another trial (I know that Kirkwood has this one) that is Ippi in one arm at 10mg given every 3 weeks for 4 infusions and then after that 1 infusion every 3 months. The other arm is interfuron. Since your dad was on interfuron he would not be eligible.  I don't think there are any other trials out there. I'm in the same predicament. I went to stage IV in 06 and have now had 7 metastices since then. I have chosen to go the surgical route, this last time they cleaned up the nerve area with radiation. 

Dr Kirkwood does prescribe leukine (at least he was in the past). It hasn't proven to be statistically helpful but some have felt that it has helped them. 

Once you have a recurrance it really doesn't matter how deep the primary melanoma was. Staging and prognosis is based on the most severe.  Other drugs such as Ippi, IL2 and the Braf drugs were FDA approved to be given with measurable disease (at least that's how it's been explained to me).  I've been on leukine in a trial for1 year. Otherwise I've done watch and wait and for some of us it does work.

Ask questions and make the Doctors explain. Keep a tangible record of all pathology reports and all scans. Get the scans copied on CD's or DVD's. That way you can go to different Doctors and have the materials needed at hand.  I would think that Pittsburg would want to re-read the latest pathology from your dad's latest surgery.

Let us know what happens,

Linda