MDKate

I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

I was diagnosed in 1979 with superficial spreading melanoma and am now stage IV.  Follow up with dermatologist only or involve an oncologist — and credit my surviving this long to advice I got many years ago — see dermatologist for all regular follow-up care but t least develop a relationship with an oncologist specializing in melanoma you see every year or two. Does not have to entail uprooting yourself to go out of state — a good teaching hospital with cancer center accreditation is sufficient (all melanoma experts in the country know one another anyway — if one you see needs to reach out they know know how to how and whom to contact). Oncologist also recommended getting a baseline PET scan and having dermatologist do full-body photos there will be a reference point for tracking changes down the line. Turned out to be best decision — when I was surprised in 2006 as stage IV after 25 years disease-free doctors could date disease changes much more precisely.   Btw, one of my my many lesions was scalp one — surgeon removed but said that  follow-up radiation to scalp was advisable unless I was going to be receiving treatment that prohibited it (which I am).  Best of luck no matter what you decide. 

Hi Nick,

Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

K. 

Hi Nick,

Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

K. 

Hi Nick,

Would not assume ipi isn't working.  My oncologists — Anna Pavlick at NYU and Jedd Wolchok at MSK– have both told me that ipi benefits can manifest themselves months after last treatment.  I was able to get all four ipi doses at NYU before getting into Dr. Wolchok's anti-PD1 trial; rationale is that doing PD1 on heels of ipi can give a boost to ipi-induced immune response.As to hormone point you mention, I've been taking post-menopausal hormones (low dose estradiol) for many years; when I expressed concern that perhaps I should try to stop was told that melanoma is not an estrgen sensitive malignancy so there was no point in feeling even more miserable while I was dealing with this disease.

Good luck to your wife — and you.  As you know, it's a terrible disease but one that certainly strengthens bonds with loved ones.

K. 

Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.    

Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.    

Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.