› Forums › General Melanoma Community › I have a weird case of Stage 3.
- This topic has 36 replies, 12 voices, and was last updated 12 years, 5 months ago by
CKasper.
- Post
-
- November 16, 2011 at 1:49 pm
You can read my profile for more info, but I have a weird case of Stage 3. At least that is what my oncologist says.
Needless to say, I want to be aggressive because I have two kiddo's under the age of 3.
My oncologist suggests a year of Interferon, but as all of you know, Interferon is not the best treatment for stage 3. At least that has been the case in my family where Melanoma is a household name.
You can read my profile for more info, but I have a weird case of Stage 3. At least that is what my oncologist says.
Needless to say, I want to be aggressive because I have two kiddo's under the age of 3.
My oncologist suggests a year of Interferon, but as all of you know, Interferon is not the best treatment for stage 3. At least that has been the case in my family where Melanoma is a household name.
I want to go strait to BioChemo or Ipilimumab, but he says that is not standard treatment. Am I crazy for wanting to do that? And is it even possiple? Has anyone ever done that? I know its no picnic, but I don't feel like there is a choice.
- Replies
-
-
- November 16, 2011 at 1:54 pm
Is this a melanoma oncologist? I would get a second opinion, asap.
Always listen to your body, and inner voice. Every time I've gone in and they've said "looks fine, but if it concerns you, we'll remove it", I was right and they were wrong.
It is worth it to travel to an excellent hospital for a second opinion. I know it's hard with very small children, but your whole goal is to be with them through the tweens, teens and beyond!
So, do what you have to do, and make the decision that is best for YOU.
Prayers to you and your family.
TracyLee Stage IV May 2011
-
- November 16, 2011 at 1:54 pm
Is this a melanoma oncologist? I would get a second opinion, asap.
Always listen to your body, and inner voice. Every time I've gone in and they've said "looks fine, but if it concerns you, we'll remove it", I was right and they were wrong.
It is worth it to travel to an excellent hospital for a second opinion. I know it's hard with very small children, but your whole goal is to be with them through the tweens, teens and beyond!
So, do what you have to do, and make the decision that is best for YOU.
Prayers to you and your family.
TracyLee Stage IV May 2011
-
- November 16, 2011 at 1:54 pm
Is this a melanoma oncologist? I would get a second opinion, asap.
Always listen to your body, and inner voice. Every time I've gone in and they've said "looks fine, but if it concerns you, we'll remove it", I was right and they were wrong.
It is worth it to travel to an excellent hospital for a second opinion. I know it's hard with very small children, but your whole goal is to be with them through the tweens, teens and beyond!
So, do what you have to do, and make the decision that is best for YOU.
Prayers to you and your family.
TracyLee Stage IV May 2011
-
- November 16, 2011 at 2:08 pm
I read your profile, and I'm so sorry for what you're going through. I'm just a bit confused, having been recently diagnosed with an in-situ as well. What made your doctor suggest a SNB for an in-situ lesion? What about the location made it necessary? Your story really scares me.
-
- November 16, 2011 at 2:08 pm
I read your profile, and I'm so sorry for what you're going through. I'm just a bit confused, having been recently diagnosed with an in-situ as well. What made your doctor suggest a SNB for an in-situ lesion? What about the location made it necessary? Your story really scares me.
-
- November 16, 2011 at 2:08 pm
I read your profile, and I'm so sorry for what you're going through. I'm just a bit confused, having been recently diagnosed with an in-situ as well. What made your doctor suggest a SNB for an in-situ lesion? What about the location made it necessary? Your story really scares me.
-
- November 16, 2011 at 2:28 pm
You might have to work hard to find a team to give you biochemo at this point. If you were stage 3C or had matted nodes or unencapsulated melanoma, then you'd be considered much higher risk. Biochemo is tough and most won't do it for lower risk stage III. As for ipi/yervoy, it isn't "approved" for stage III NED (no evidence of disease) right now so a trial may be your best option as another poster mentioned. It might be hard to get someone to give it to you – or even get your insurance to approve it if you're NED. It is VERY expensive. Interferon's stats don't say it increases survival, it only delays recurrence in a small population. So if someone in your family progressed after Interferon, it doesn't mean that interferon didn't work for even a short time. Has your doctor also considered that you might have another primary than the in situ that caused this spread? If you have a lot of dysplastic nevi, it might be possible that the in situ wasn't the source. Just a thought. And what about the location prompted a SNB? It is NEVER done for in situ which leads me to believe there was something else different about your lesion that prompted concern by your doctor. The size of 1mm, while unusual, isn't unheard of. So what else prompted the extra caution?
-
- November 16, 2011 at 2:28 pm
You might have to work hard to find a team to give you biochemo at this point. If you were stage 3C or had matted nodes or unencapsulated melanoma, then you'd be considered much higher risk. Biochemo is tough and most won't do it for lower risk stage III. As for ipi/yervoy, it isn't "approved" for stage III NED (no evidence of disease) right now so a trial may be your best option as another poster mentioned. It might be hard to get someone to give it to you – or even get your insurance to approve it if you're NED. It is VERY expensive. Interferon's stats don't say it increases survival, it only delays recurrence in a small population. So if someone in your family progressed after Interferon, it doesn't mean that interferon didn't work for even a short time. Has your doctor also considered that you might have another primary than the in situ that caused this spread? If you have a lot of dysplastic nevi, it might be possible that the in situ wasn't the source. Just a thought. And what about the location prompted a SNB? It is NEVER done for in situ which leads me to believe there was something else different about your lesion that prompted concern by your doctor. The size of 1mm, while unusual, isn't unheard of. So what else prompted the extra caution?
-
- November 16, 2011 at 2:28 pm
You might have to work hard to find a team to give you biochemo at this point. If you were stage 3C or had matted nodes or unencapsulated melanoma, then you'd be considered much higher risk. Biochemo is tough and most won't do it for lower risk stage III. As for ipi/yervoy, it isn't "approved" for stage III NED (no evidence of disease) right now so a trial may be your best option as another poster mentioned. It might be hard to get someone to give it to you – or even get your insurance to approve it if you're NED. It is VERY expensive. Interferon's stats don't say it increases survival, it only delays recurrence in a small population. So if someone in your family progressed after Interferon, it doesn't mean that interferon didn't work for even a short time. Has your doctor also considered that you might have another primary than the in situ that caused this spread? If you have a lot of dysplastic nevi, it might be possible that the in situ wasn't the source. Just a thought. And what about the location prompted a SNB? It is NEVER done for in situ which leads me to believe there was something else different about your lesion that prompted concern by your doctor. The size of 1mm, while unusual, isn't unheard of. So what else prompted the extra caution?
-
- November 16, 2011 at 2:28 pm
While you did fill out the profile you need more info. Did a surgeon do the SNB? Also, was it cells or tumor and how much?
You are lucky that they looked further into the insitu and are fortunate. Post your pathology that will give more info. Depending on what info you have there is a good chance you are stage 3A which then even limits more options. Your profile lists you are in the Boston area and there should be many melanoma specialists in the area.
Linda
Stage 1A 1979, multiple primaries, 06 Stage IV, 2011 brain met but still fighting!
-
- November 16, 2011 at 2:28 pm
While you did fill out the profile you need more info. Did a surgeon do the SNB? Also, was it cells or tumor and how much?
You are lucky that they looked further into the insitu and are fortunate. Post your pathology that will give more info. Depending on what info you have there is a good chance you are stage 3A which then even limits more options. Your profile lists you are in the Boston area and there should be many melanoma specialists in the area.
Linda
Stage 1A 1979, multiple primaries, 06 Stage IV, 2011 brain met but still fighting!
-
- November 16, 2011 at 2:28 pm
While you did fill out the profile you need more info. Did a surgeon do the SNB? Also, was it cells or tumor and how much?
You are lucky that they looked further into the insitu and are fortunate. Post your pathology that will give more info. Depending on what info you have there is a good chance you are stage 3A which then even limits more options. Your profile lists you are in the Boston area and there should be many melanoma specialists in the area.
Linda
Stage 1A 1979, multiple primaries, 06 Stage IV, 2011 brain met but still fighting!
-
- November 16, 2011 at 2:40 pm
Are you seeing a melanoma specialist, or just an oncologist? What options you have could very GREATLY depending on who you ask. When my husband was first diagnosed, the local oncologist said basically all they had available to him was chemotherapy and ipi. Our horizons were much broader when we opted to go to a specialist!
I saw you list yourself as from the Boston area. If that is the case, then I HIGHLY recommend Dr. Donald Lawrence at Mass General Hospital's Melanoma Center. He was my husband's doctor and he was phenomenal. He knows his stuff, he's been a specialist for 15 plus years, plus he heads up the clinical trials for that department. If anyone is going to know what options are out there for you, he would.
Wishing you the very best of luck, and feel free to contact me if you have questions.
Michelle, wife of Don
-
- November 16, 2011 at 2:40 pm
Are you seeing a melanoma specialist, or just an oncologist? What options you have could very GREATLY depending on who you ask. When my husband was first diagnosed, the local oncologist said basically all they had available to him was chemotherapy and ipi. Our horizons were much broader when we opted to go to a specialist!
I saw you list yourself as from the Boston area. If that is the case, then I HIGHLY recommend Dr. Donald Lawrence at Mass General Hospital's Melanoma Center. He was my husband's doctor and he was phenomenal. He knows his stuff, he's been a specialist for 15 plus years, plus he heads up the clinical trials for that department. If anyone is going to know what options are out there for you, he would.
Wishing you the very best of luck, and feel free to contact me if you have questions.
Michelle, wife of Don
-
- November 16, 2011 at 2:40 pm
Are you seeing a melanoma specialist, or just an oncologist? What options you have could very GREATLY depending on who you ask. When my husband was first diagnosed, the local oncologist said basically all they had available to him was chemotherapy and ipi. Our horizons were much broader when we opted to go to a specialist!
I saw you list yourself as from the Boston area. If that is the case, then I HIGHLY recommend Dr. Donald Lawrence at Mass General Hospital's Melanoma Center. He was my husband's doctor and he was phenomenal. He knows his stuff, he's been a specialist for 15 plus years, plus he heads up the clinical trials for that department. If anyone is going to know what options are out there for you, he would.
Wishing you the very best of luck, and feel free to contact me if you have questions.
Michelle, wife of Don
-
- November 16, 2011 at 5:53 pm
i am relatively new to the melanoma community as of may this year. my initial lesion 2 biopsies were taken because it was kinda large… 1 came back in situ… the other came with a breslow depth that made me stage 1… long story short, i also have small kids, i pushed for more testing… in oct i had a snlb that found micro mets… so my theory is your dr was being cautious because the tumors dont neccesarily grow evenly. i will keep you in my thoughts and prayers…
-
- November 16, 2011 at 5:53 pm
i am relatively new to the melanoma community as of may this year. my initial lesion 2 biopsies were taken because it was kinda large… 1 came back in situ… the other came with a breslow depth that made me stage 1… long story short, i also have small kids, i pushed for more testing… in oct i had a snlb that found micro mets… so my theory is your dr was being cautious because the tumors dont neccesarily grow evenly. i will keep you in my thoughts and prayers…
-
- November 16, 2011 at 5:53 pm
i am relatively new to the melanoma community as of may this year. my initial lesion 2 biopsies were taken because it was kinda large… 1 came back in situ… the other came with a breslow depth that made me stage 1… long story short, i also have small kids, i pushed for more testing… in oct i had a snlb that found micro mets… so my theory is your dr was being cautious because the tumors dont neccesarily grow evenly. i will keep you in my thoughts and prayers…
-
- November 16, 2011 at 6:46 pm
I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and underwent biochemotherapy at the University of Colorado Cancer Center, and today am healthy and NED. Standard? No. Possible? Yes. You might also be able to receive Ipi in a clinical trial. Even if you're seeing a melanoma specialist, I'd recommend seeking a second opinion on treatment options. Best wishes to you!
Rich
-
- November 16, 2011 at 6:46 pm
I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and underwent biochemotherapy at the University of Colorado Cancer Center, and today am healthy and NED. Standard? No. Possible? Yes. You might also be able to receive Ipi in a clinical trial. Even if you're seeing a melanoma specialist, I'd recommend seeking a second opinion on treatment options. Best wishes to you!
Rich
-
- November 16, 2011 at 6:46 pm
I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and underwent biochemotherapy at the University of Colorado Cancer Center, and today am healthy and NED. Standard? No. Possible? Yes. You might also be able to receive Ipi in a clinical trial. Even if you're seeing a melanoma specialist, I'd recommend seeking a second opinion on treatment options. Best wishes to you!
Rich
-
- November 16, 2011 at 7:03 pm
As others have said, although you filled out some of your profile it is still very lacking and confusing.
For example: It states Initial Diagnosis: November 2011, yet you had semi annual scans? Because of why? A stage 1 diagnosis? Hard to believe. What other circumstances are involved? I asume the scan was clear as well.
Where are you being seen?
Melanoma onc?
Why was a SNB performed for a melanoma insitu? Was the second lesion removed close to where the first was found? Maybe not a mole? Rather a recurrence of the first melanoma?
Get any and all Pathology reports and post them here so some can help you, as welll as keep them for your own records.
A more through job on all fronts would be appreciated by all here to assist you better.
-
- November 16, 2011 at 7:03 pm
As others have said, although you filled out some of your profile it is still very lacking and confusing.
For example: It states Initial Diagnosis: November 2011, yet you had semi annual scans? Because of why? A stage 1 diagnosis? Hard to believe. What other circumstances are involved? I asume the scan was clear as well.
Where are you being seen?
Melanoma onc?
Why was a SNB performed for a melanoma insitu? Was the second lesion removed close to where the first was found? Maybe not a mole? Rather a recurrence of the first melanoma?
Get any and all Pathology reports and post them here so some can help you, as welll as keep them for your own records.
A more through job on all fronts would be appreciated by all here to assist you better.
-
- November 16, 2011 at 7:03 pm
As others have said, although you filled out some of your profile it is still very lacking and confusing.
For example: It states Initial Diagnosis: November 2011, yet you had semi annual scans? Because of why? A stage 1 diagnosis? Hard to believe. What other circumstances are involved? I asume the scan was clear as well.
Where are you being seen?
Melanoma onc?
Why was a SNB performed for a melanoma insitu? Was the second lesion removed close to where the first was found? Maybe not a mole? Rather a recurrence of the first melanoma?
Get any and all Pathology reports and post them here so some can help you, as welll as keep them for your own records.
A more through job on all fronts would be appreciated by all here to assist you better.
-
- November 16, 2011 at 8:12 pm
I saw someone recommend Boston General. I haven't gone there but they have been recommended to me very highly by an acquaintance active in the melanoma community . Dr David E Fisher is Director of the Melanoma program there. I've just recently been diagnosed as stage 4 after being NED for 20 months after surgery, radiation and Interferon. I'm presently being treated in New York but Boston General is on my short list for a 2nd opinion once I get the results of my most recent scans as well as BRAF test. All the best to you
Frankd
-
- November 16, 2011 at 8:12 pm
I saw someone recommend Boston General. I haven't gone there but they have been recommended to me very highly by an acquaintance active in the melanoma community . Dr David E Fisher is Director of the Melanoma program there. I've just recently been diagnosed as stage 4 after being NED for 20 months after surgery, radiation and Interferon. I'm presently being treated in New York but Boston General is on my short list for a 2nd opinion once I get the results of my most recent scans as well as BRAF test. All the best to you
Frankd
-
- November 16, 2011 at 8:12 pm
I saw someone recommend Boston General. I haven't gone there but they have been recommended to me very highly by an acquaintance active in the melanoma community . Dr David E Fisher is Director of the Melanoma program there. I've just recently been diagnosed as stage 4 after being NED for 20 months after surgery, radiation and Interferon. I'm presently being treated in New York but Boston General is on my short list for a 2nd opinion once I get the results of my most recent scans as well as BRAF test. All the best to you
Frankd
-
- November 16, 2011 at 9:31 pm
Thank you all for your concern.
I do not have the path report, but I requested it, so I should have it soon.
I am sorry for the confusion.
To answer a few questions.
1. My derm is amazing. He will biopsy anything I want taken off. However, because I have so many moles, its only wise for my to remove the ones that are changing or look very suspicious. Otherwise, we would be taking off 100+ moles. They ALL defy the typical ABCD characteristics.
2. The reason why I see the derm so much is because I have so many moles. Most of the time I see him every six months, but during my pregnancies, I see him every 3.
3. The SNB was only preformed because of my family history. My derm knows my entire family and he suggested we be safe. I know is not typical, but I was fine with it.
4. I have two melanoma oncologist that are working with my derm. Both are as confused as you all are and I was told to hang tight until they make a few more calls. But they cannot explain why there were malignant cells in my SNB. The mole was sent for a second opinion and it was indeed Melanoma in Situ.
I did make a mistake in my profile. The diameter of the mole was 1X2. Super small mole, but it was dark. I would mention it was irregular, but that goes for most of my moles. This mole was just dark, which is why I asked for it to be removed.
-
- November 16, 2011 at 9:31 pm
Thank you all for your concern.
I do not have the path report, but I requested it, so I should have it soon.
I am sorry for the confusion.
To answer a few questions.
1. My derm is amazing. He will biopsy anything I want taken off. However, because I have so many moles, its only wise for my to remove the ones that are changing or look very suspicious. Otherwise, we would be taking off 100+ moles. They ALL defy the typical ABCD characteristics.
2. The reason why I see the derm so much is because I have so many moles. Most of the time I see him every six months, but during my pregnancies, I see him every 3.
3. The SNB was only preformed because of my family history. My derm knows my entire family and he suggested we be safe. I know is not typical, but I was fine with it.
4. I have two melanoma oncologist that are working with my derm. Both are as confused as you all are and I was told to hang tight until they make a few more calls. But they cannot explain why there were malignant cells in my SNB. The mole was sent for a second opinion and it was indeed Melanoma in Situ.
I did make a mistake in my profile. The diameter of the mole was 1X2. Super small mole, but it was dark. I would mention it was irregular, but that goes for most of my moles. This mole was just dark, which is why I asked for it to be removed.
-
- November 16, 2011 at 9:31 pm
Thank you all for your concern.
I do not have the path report, but I requested it, so I should have it soon.
I am sorry for the confusion.
To answer a few questions.
1. My derm is amazing. He will biopsy anything I want taken off. However, because I have so many moles, its only wise for my to remove the ones that are changing or look very suspicious. Otherwise, we would be taking off 100+ moles. They ALL defy the typical ABCD characteristics.
2. The reason why I see the derm so much is because I have so many moles. Most of the time I see him every six months, but during my pregnancies, I see him every 3.
3. The SNB was only preformed because of my family history. My derm knows my entire family and he suggested we be safe. I know is not typical, but I was fine with it.
4. I have two melanoma oncologist that are working with my derm. Both are as confused as you all are and I was told to hang tight until they make a few more calls. But they cannot explain why there were malignant cells in my SNB. The mole was sent for a second opinion and it was indeed Melanoma in Situ.
I did make a mistake in my profile. The diameter of the mole was 1X2. Super small mole, but it was dark. I would mention it was irregular, but that goes for most of my moles. This mole was just dark, which is why I asked for it to be removed.
-
- You must be logged in to reply to this topic.