Newbie – Stage III-C after Surgery – Looking for your thoughts

Hi John,

Sorry to have welcome you to this group, but glad you've found it.  It's a wonderful group for support and informattion.

I can't answer your first and last question about treatments, but I can help with the second.  I am also in So Cal (Huntington Beach).  I go to the Angeles Clinic in Santa Monica.  It's  abit of a hike for me, but it's been well worth the drive.   Dr. O'Day is my dr. and and his staff are wonderful.  I also hear that St. John's Hospital and the John Wayne Cancer center has a good mel program. 

Here's the info for the Angeles Clinic (http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx)

Blessings,

Julie

Hi John,

Sorry to have welcome you to this group, but glad you've found it.  It's a wonderful group for support and informattion.

I can't answer your first and last question about treatments, but I can help with the second.  I am also in So Cal (Huntington Beach).  I go to the Angeles Clinic in Santa Monica.  It's  abit of a hike for me, but it's been well worth the drive.   Dr. O'Day is my dr. and and his staff are wonderful.  I also hear that St. John's Hospital and the John Wayne Cancer center has a good mel program. 

Here's the info for the Angeles Clinic (http://www.theangelesclinic.org/Home/SpecialtyCenters/MelanomaSkinCancer/tabid/19288/Default.aspx)

Blessings,

Julie

Hi John,

Sorry to hear about your diagnosis. I am stage 3a and am in San Diego. I go to local doctors for check ups and pet/ct scans but my main doctors are at UCSF . They are amazing ..Dr. Daud is great and up until a couple months ago Dr. Bastian Balch (a well know researcher) was working there too. I have complete faith in them and they have helped me get through my diagnosis. Stage 3a (originally diagnosed at 26. I am now 27 ..almost 28.

I just finished a year long treatment of interferon and have my next PET/CT in January. I know interferon is a personal choice but it was right for me. Have you looked into getting your genetic testing done? To see if you are braf positive or have ckit? etc? Keep us posted!

Jenjen 3a

NED 15 months and praying it holds

Hi John,

Sorry to hear about your diagnosis. I am stage 3a and am in San Diego. I go to local doctors for check ups and pet/ct scans but my main doctors are at UCSF . They are amazing ..Dr. Daud is great and up until a couple months ago Dr. Bastian Balch (a well know researcher) was working there too. I have complete faith in them and they have helped me get through my diagnosis. Stage 3a (originally diagnosed at 26. I am now 27 ..almost 28.

I just finished a year long treatment of interferon and have my next PET/CT in January. I know interferon is a personal choice but it was right for me. Have you looked into getting your genetic testing done? To see if you are braf positive or have ckit? etc? Keep us posted!

Jenjen 3a

NED 15 months and praying it holds

John- my surgeon waited a month post surgery before the pet scan.  The logic was that the uptake would be focused on the incision and it would be difficult to tell what was really going on.

I did 6 months of interferon, but that was 5 years ago and there are better options out there now.

Best of luck to you and please keep us posted.

Fen

John- my surgeon waited a month post surgery before the pet scan.  The logic was that the uptake would be focused on the incision and it would be difficult to tell what was really going on.

I did 6 months of interferon, but that was 5 years ago and there are better options out there now.

Best of luck to you and please keep us posted.

Fen

Hello John,

Sorry you have to join us. I would think that you would have a PET or maybe a PET/CT relatively soon to check for organ spread and to finalize your staging.

Assuming that there is no further spread, you are most likely looking at surgical removal of the rest of the nodes in the lymph node basin where your sentinal node biopsy was done (your armpit I assume) And almost always, this is followed by a recommendation of high dose interferon administered by intraveneous infusion for the five days a week for 5 weeks, followed by lower dose self injections 3 times a week for 11 months. Interferon is generally started within 58 days of the LND (Lymph Node Dissection)

As you have mentioned, clinical trials are also an option, and you should be looking into them. (go to clinicaltrials.gov) But realistically, knowing your stage is essential before considering treatment or trials. If things stand as they are, you are stage 3C, and you can look at trials for which you would be eligible, but if you have metastes in any organs, that would change everything.

You are, arguably, at the most stressful part of your diagnosis, having to wait to find out your real stage. All you can do right now is research and wait, and it can drive you nuts. Researching without having all your details can just raise your stress level to the max.

If you are stage IV, then IPI might be the best bet at this point..unless it's something that could be surgically resected. Surgery is the best friend of melanoma patients in my opinion. But it's not always an option.

I could be wrong, but I think that the only Ipi trials open to stage 3 patients have a placebo arm, and if I were in your position I would not want to go with ANY trial that has a placebo arm.

Does anyone know if there's an Ipi trial out there that compares Ipi and interferon?? I haven't heard of it if it's there. Because mainly interferon is for stage 3 and Ipi has been mostly limited to stage 4.

I saw that a previous poster mentioned a month as a time frame, but I think that when I advanced to stage 3B, my PET scan was done right around the same time as my Wide Excision. I was fortunate enough not to have to have a LND. But I don't think they waited a month to do my PET. They weren't worried about the surgical site being reactive. They were looking for tumors in my lungs and liver.

Finally, I'd like to say that there are many people here at both stage 3 and 4 who are thriving, some without signs of disease (we call that NED..no evidence of disease, and others who are actively fighting disease, either stable or in treatment. This is a good place you've found, with people who will understand every step you have to take.

Good luck,

dian

Hello John,

Sorry you have to join us. I would think that you would have a PET or maybe a PET/CT relatively soon to check for organ spread and to finalize your staging.

Assuming that there is no further spread, you are most likely looking at surgical removal of the rest of the nodes in the lymph node basin where your sentinal node biopsy was done (your armpit I assume) And almost always, this is followed by a recommendation of high dose interferon administered by intraveneous infusion for the five days a week for 5 weeks, followed by lower dose self injections 3 times a week for 11 months. Interferon is generally started within 58 days of the LND (Lymph Node Dissection)

As you have mentioned, clinical trials are also an option, and you should be looking into them. (go to clinicaltrials.gov) But realistically, knowing your stage is essential before considering treatment or trials. If things stand as they are, you are stage 3C, and you can look at trials for which you would be eligible, but if you have metastes in any organs, that would change everything.

You are, arguably, at the most stressful part of your diagnosis, having to wait to find out your real stage. All you can do right now is research and wait, and it can drive you nuts. Researching without having all your details can just raise your stress level to the max.

If you are stage IV, then IPI might be the best bet at this point..unless it's something that could be surgically resected. Surgery is the best friend of melanoma patients in my opinion. But it's not always an option.

I could be wrong, but I think that the only Ipi trials open to stage 3 patients have a placebo arm, and if I were in your position I would not want to go with ANY trial that has a placebo arm.

Does anyone know if there's an Ipi trial out there that compares Ipi and interferon?? I haven't heard of it if it's there. Because mainly interferon is for stage 3 and Ipi has been mostly limited to stage 4.

I saw that a previous poster mentioned a month as a time frame, but I think that when I advanced to stage 3B, my PET scan was done right around the same time as my Wide Excision. I was fortunate enough not to have to have a LND. But I don't think they waited a month to do my PET. They weren't worried about the surgical site being reactive. They were looking for tumors in my lungs and liver.

Finally, I'd like to say that there are many people here at both stage 3 and 4 who are thriving, some without signs of disease (we call that NED..no evidence of disease, and others who are actively fighting disease, either stable or in treatment. This is a good place you've found, with people who will understand every step you have to take.

Good luck,

dian

Hello John,

This is very strange, but you and I had our surgery on the same day, November 16, following much the same diagnosis.  I had nodular melanoma, left back, Breslow 4.35, mitotic rate 9, Clark level V.  The wide excision results were clear, but the SNB came back one of two nodes positive.  I will have the lymph node dissection on December 17.  I did have a PET/CT scan on November 22, less than two weeks after the excision.  I was concerned as well about whether the recent surgery would taint the scans, but they assured me they could tell the difference.  My scans were clear, so that is good, but of course, they cannot detect microscopic spread.  This is my second fight with a crummy and hard to treat cancer, as I am 8 years post (very successful) stem cell transplant for  bone marrow failure.  I am currently staged IIIa with this melanoma.  I know I will not do interferon and don't know what my past history does to my chances for the other options out there.  Right now I choose watch and wait, I think.  By the way, I love your signature!  I will be 60 next week, and I am "healthy and hopeful" too.

Vivian in Delaware

Hello John,

This is very strange, but you and I had our surgery on the same day, November 16, following much the same diagnosis.  I had nodular melanoma, left back, Breslow 4.35, mitotic rate 9, Clark level V.  The wide excision results were clear, but the SNB came back one of two nodes positive.  I will have the lymph node dissection on December 17.  I did have a PET/CT scan on November 22, less than two weeks after the excision.  I was concerned as well about whether the recent surgery would taint the scans, but they assured me they could tell the difference.  My scans were clear, so that is good, but of course, they cannot detect microscopic spread.  This is my second fight with a crummy and hard to treat cancer, as I am 8 years post (very successful) stem cell transplant for  bone marrow failure.  I am currently staged IIIa with this melanoma.  I know I will not do interferon and don't know what my past history does to my chances for the other options out there.  Right now I choose watch and wait, I think.  By the way, I love your signature!  I will be 60 next week, and I am "healthy and hopeful" too.

Vivian in Delaware

Sorry to hear of your dilemma. I didn’t see any mention of insurance in your posting. I just thought I would mention that if you are being treated under an insurance plan to make sure the hospital you are seen by is “in network” or equivalent.

After my diagnosis, my dermatologist offered to refer me to either UCSF or Stanford, and I picked Stanford because it was closer to me. I was so freaked-out and solely concerned about my health, that I wasn’t even thinking about the financial implications of my decision at that moment. Fortunately, Stanford was in my plan’s network.

I have nothing to compare them to, as this was my first visit to the cancer carnival, but I have been happy with Stanford up to this point. Feel free to email me if you want more details or a contact at Stanford.

Best regards,
Mark (Stage 2A) from (Northern) California

Sorry to hear of your dilemma. I didn’t see any mention of insurance in your posting. I just thought I would mention that if you are being treated under an insurance plan to make sure the hospital you are seen by is “in network” or equivalent.

After my diagnosis, my dermatologist offered to refer me to either UCSF or Stanford, and I picked Stanford because it was closer to me. I was so freaked-out and solely concerned about my health, that I wasn’t even thinking about the financial implications of my decision at that moment. Fortunately, Stanford was in my plan’s network.

I have nothing to compare them to, as this was my first visit to the cancer carnival, but I have been happy with Stanford up to this point. Feel free to email me if you want more details or a contact at Stanford.

Best regards,
Mark (Stage 2A) from (Northern) California