New here, wanted to get some feedback!

Kaiser in California, Sacramento area.  Will look at the other docs, but being within the Kaiser network does have some potential limitations I guess.  

From our readings (including the video posted earlier) it does sound like there are other treatment options, but some of those like IPPY (sp?) have even more side effects and higher mortality rates. Restulting from the treatments.

Our doctor did say there was a lot of debate around the treatments, sounds like that is certainly the case.  Especially with a IIB diagnosis.  

Kaiser won't have an issue with us going for a second opinion, they can't stop that.  The issue is having them pay for it, they will only pay if they refer you out.  Sounds like you switched insurance plans and that isn't necessarily an option for us.

We may go out of pocket for the second opinion and see what we learn from that though.  UCSF was one that we saw on the site as well as St Mary's I think.

Kaiser won't have an issue with us going for a second opinion, they can't stop that.  The issue is having them pay for it, they will only pay if they refer you out.  Sounds like you switched insurance plans and that isn't necessarily an option for us.

We may go out of pocket for the second opinion and see what we learn from that though.  UCSF was one that we saw on the site as well as St Mary's I think.

Kaiser won't have an issue with us going for a second opinion, they can't stop that.  The issue is having them pay for it, they will only pay if they refer you out.  Sounds like you switched insurance plans and that isn't necessarily an option for us.

We may go out of pocket for the second opinion and see what we learn from that though.  UCSF was one that we saw on the site as well as St Mary's I think.

We have a second opinion with UCSF on Thursday.  But everything we're hearing and reading seems to indicate that Interferon is the path we need to follow.  The key factor in IIB seems to revolve around the depth and that is what steers the docs towards Interferon.

We have a second opinion with UCSF on Thursday.  But everything we're hearing and reading seems to indicate that Interferon is the path we need to follow.  The key factor in IIB seems to revolve around the depth and that is what steers the docs towards Interferon.

We have a second opinion with UCSF on Thursday.  But everything we're hearing and reading seems to indicate that Interferon is the path we need to follow.  The key factor in IIB seems to revolve around the depth and that is what steers the docs towards Interferon.

Hard to keep track of all of them 🙂  But here's a few things I can point to:

– 2014 article that suggests in a study for IIB-V patients that "HDI is unique in demonstrating significant improvements in the risk of recurrence (E1684, E1690, and E1694) and death as compared with observation"  -http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma#sthash.9cqpeuAy.dpuf"

– Medscape treatment by stage (http://emedicine.medscape.com/article/2006810-overview) states use of INF should e individualized.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/treatment-options-for-stage-ii-melanoma/ "Several studies indicate that high dose interferon alfa-2b, a manufactured form of interferon, consistently delays relapse/recurrence of melanoma in patients with Stage IIB/C. However, studies have not consistently shown that interferon can extend overall survival."

http://www.aimatmelanoma.net/gb/aim-for-answers/treatment-of-melanoma/drugs-for-melanoma/intron-a-high-dose-interferon-alfa-2b.html "It is also given to certain late Stage IIB or Stage IIC patients (those with lesions of Breslowthickness > 4 mm)."

Our doctor as I mentioend said the key factor seems to be the thickness and depth for IIB patients.  When we called UCSF for the second opinion on the phone they initially questioned it too (the cooridinator) and it was mentioned to them that our current doc was focused on the depth and we received a response of "oh wow, yea" once they looked at the pathology.  

The last link I referenced above focuses on thicknesses greater than 4mm, our breslow measurement was 7mm.

I recognize some of these references are older or from non-melanoma specialized sites, but some are not and honestly I can't seem to find anything that counters that other than a few folks here saying there are other options, so if there are references to things that suggest a IIB with this thick of a tumor should do something different I'd like to see those.

Will report back on what UCSF says after Thursday. 

Hard to keep track of all of them 🙂  But here's a few things I can point to:

– 2014 article that suggests in a study for IIB-V patients that "HDI is unique in demonstrating significant improvements in the risk of recurrence (E1684, E1690, and E1694) and death as compared with observation"  -http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma#sthash.9cqpeuAy.dpuf"

– Medscape treatment by stage (http://emedicine.medscape.com/article/2006810-overview) states use of INF should e individualized.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/treatment-options-for-stage-ii-melanoma/ "Several studies indicate that high dose interferon alfa-2b, a manufactured form of interferon, consistently delays relapse/recurrence of melanoma in patients with Stage IIB/C. However, studies have not consistently shown that interferon can extend overall survival."

http://www.aimatmelanoma.net/gb/aim-for-answers/treatment-of-melanoma/drugs-for-melanoma/intron-a-high-dose-interferon-alfa-2b.html "It is also given to certain late Stage IIB or Stage IIC patients (those with lesions of Breslowthickness > 4 mm)."

Our doctor as I mentioend said the key factor seems to be the thickness and depth for IIB patients.  When we called UCSF for the second opinion on the phone they initially questioned it too (the cooridinator) and it was mentioned to them that our current doc was focused on the depth and we received a response of "oh wow, yea" once they looked at the pathology.  

The last link I referenced above focuses on thicknesses greater than 4mm, our breslow measurement was 7mm.

I recognize some of these references are older or from non-melanoma specialized sites, but some are not and honestly I can't seem to find anything that counters that other than a few folks here saying there are other options, so if there are references to things that suggest a IIB with this thick of a tumor should do something different I'd like to see those.

Will report back on what UCSF says after Thursday. 

Hard to keep track of all of them 🙂  But here's a few things I can point to:

– 2014 article that suggests in a study for IIB-V patients that "HDI is unique in demonstrating significant improvements in the risk of recurrence (E1684, E1690, and E1694) and death as compared with observation"  -http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma#sthash.9cqpeuAy.dpuf"

– Medscape treatment by stage (http://emedicine.medscape.com/article/2006810-overview) states use of INF should e individualized.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/treatment-options-for-stage-ii-melanoma/ "Several studies indicate that high dose interferon alfa-2b, a manufactured form of interferon, consistently delays relapse/recurrence of melanoma in patients with Stage IIB/C. However, studies have not consistently shown that interferon can extend overall survival."

http://www.aimatmelanoma.net/gb/aim-for-answers/treatment-of-melanoma/drugs-for-melanoma/intron-a-high-dose-interferon-alfa-2b.html "It is also given to certain late Stage IIB or Stage IIC patients (those with lesions of Breslowthickness > 4 mm)."

Our doctor as I mentioend said the key factor seems to be the thickness and depth for IIB patients.  When we called UCSF for the second opinion on the phone they initially questioned it too (the cooridinator) and it was mentioned to them that our current doc was focused on the depth and we received a response of "oh wow, yea" once they looked at the pathology.  

The last link I referenced above focuses on thicknesses greater than 4mm, our breslow measurement was 7mm.

I recognize some of these references are older or from non-melanoma specialized sites, but some are not and honestly I can't seem to find anything that counters that other than a few folks here saying there are other options, so if there are references to things that suggest a IIB with this thick of a tumor should do something different I'd like to see those.

Will report back on what UCSF says after Thursday. 

I'm not sure it's the right way to approach it but we've been focusing on the timeframe for recurance, not survavability.  Our understanding is that the farther out you can push out recurrance the better your survival chances are.  

We did watch the video and the discussions in there seemed to be alot around Ipi (sp?) which is not from anything I'm seeing as a valid treatement even in any open studies for stage II patients.  The only treatments we're seeing for stage IIB specifically are observation or Interfeon.  Unless I missed something?

I'm not sure it's the right way to approach it but we've been focusing on the timeframe for recurance, not survavability.  Our understanding is that the farther out you can push out recurrance the better your survival chances are.  

We did watch the video and the discussions in there seemed to be alot around Ipi (sp?) which is not from anything I'm seeing as a valid treatement even in any open studies for stage II patients.  The only treatments we're seeing for stage IIB specifically are observation or Interfeon.  Unless I missed something?

I'm not sure it's the right way to approach it but we've been focusing on the timeframe for recurance, not survavability.  Our understanding is that the farther out you can push out recurrance the better your survival chances are.  

We did watch the video and the discussions in there seemed to be alot around Ipi (sp?) which is not from anything I'm seeing as a valid treatement even in any open studies for stage II patients.  The only treatments we're seeing for stage IIB specifically are observation or Interfeon.  Unless I missed something?

We had an interesting trip with UCSF.  Doctor was great, she spent probably 1.5 hours with us discussing this in depth. 

She did agree that INF is a standard treatment option for a IIB classification.  However, she is disagreeing with the staging of this cancer and as a result is suggesting a different approach.

She is not convinced that the tumor that was removed is the primary site (and niether were they in the initial pathology reports or are other doc).  She called it a tumor of unknown primary origin, which is unusual but not uncommon.  May never know where the primary site is, it may not exist anymore.  But to have a subdermal tumor site pop up  as a primary location would be unlikely.  

Even though there is no lymph node involvement, because this is likely a local metastasis she believes it should be staged as a IIIB Melanoma.

With that, she did discuss approaches.

1 – Surveillance only.  Watch everything closely, if / when something comes up, attack it with the current treatment at that time which may be more advanced than where we are at right now.  

2 – INF as we were headed towards

3 – IPI

4 – Clinical trial (none open now)

Her opinion was to go with Surveillance.  She would like to get the tissue samples and have their labs review them to see if they agree on the pathology as well.  

She is going to talk with the Kaiser oncologist today and discuss this with him in case she is missing something.  Of course there could be some disagreement between them but we'll see where this goes.  

In the meantime it looks like we'll delay starting anything until this is sorted out.  The idea of doing nothing but watching things closesly is intruiging of course, but also nerve racking!  

Thanks, and likewise for you!  

And adding to what I posted the other day, the two doctors chatted with each other and are in agreement on the plan, which is nice as well.  Sounded like the Kaiser doc was not totally convinced in the re-staging diagnosis but agreed that a monitoring plan was an acceptable approach.

Thanks, and likewise for you!  

And adding to what I posted the other day, the two doctors chatted with each other and are in agreement on the plan, which is nice as well.  Sounded like the Kaiser doc was not totally convinced in the re-staging diagnosis but agreed that a monitoring plan was an acceptable approach.

Thanks, and likewise for you!  

And adding to what I posted the other day, the two doctors chatted with each other and are in agreement on the plan, which is nice as well.  Sounded like the Kaiser doc was not totally convinced in the re-staging diagnosis but agreed that a monitoring plan was an acceptable approach.

More updates….UCSF is great, awesome to have them within a reasonable distance.  

They did a board evaluation of the tissue samples to confirm the previous pathology reports.  This moved us back to a IIB diagnosis in that they now do believe they have identified the primary site.  It looks like this is a rare Blue Nevus malignant melanoma.  UCSF says they have only seen a handful of these cases, great….

They are known to be fairly agressive unfortunately, but it doesn't change the care plan they are suggesting, just increases the surviellance.  PET Scans every 4 months for the first year as well as the Derm visits every 3 months.  We cross our fingers that we don't see a metastasis for a long time…

More updates….UCSF is great, awesome to have them within a reasonable distance.  

They did a board evaluation of the tissue samples to confirm the previous pathology reports.  This moved us back to a IIB diagnosis in that they now do believe they have identified the primary site.  It looks like this is a rare Blue Nevus malignant melanoma.  UCSF says they have only seen a handful of these cases, great….

They are known to be fairly agressive unfortunately, but it doesn't change the care plan they are suggesting, just increases the surviellance.  PET Scans every 4 months for the first year as well as the Derm visits every 3 months.  We cross our fingers that we don't see a metastasis for a long time…

More updates….UCSF is great, awesome to have them within a reasonable distance.  

They did a board evaluation of the tissue samples to confirm the previous pathology reports.  This moved us back to a IIB diagnosis in that they now do believe they have identified the primary site.  It looks like this is a rare Blue Nevus malignant melanoma.  UCSF says they have only seen a handful of these cases, great….

They are known to be fairly agressive unfortunately, but it doesn't change the care plan they are suggesting, just increases the surviellance.  PET Scans every 4 months for the first year as well as the Derm visits every 3 months.  We cross our fingers that we don't see a metastasis for a long time…

We had an interesting trip with UCSF.  Doctor was great, she spent probably 1.5 hours with us discussing this in depth. 

She did agree that INF is a standard treatment option for a IIB classification.  However, she is disagreeing with the staging of this cancer and as a result is suggesting a different approach.

She is not convinced that the tumor that was removed is the primary site (and niether were they in the initial pathology reports or are other doc).  She called it a tumor of unknown primary origin, which is unusual but not uncommon.  May never know where the primary site is, it may not exist anymore.  But to have a subdermal tumor site pop up  as a primary location would be unlikely.  

Even though there is no lymph node involvement, because this is likely a local metastasis she believes it should be staged as a IIIB Melanoma.

With that, she did discuss approaches.

1 – Surveillance only.  Watch everything closely, if / when something comes up, attack it with the current treatment at that time which may be more advanced than where we are at right now.  

2 – INF as we were headed towards

3 – IPI

4 – Clinical trial (none open now)

Her opinion was to go with Surveillance.  She would like to get the tissue samples and have their labs review them to see if they agree on the pathology as well.  

She is going to talk with the Kaiser oncologist today and discuss this with him in case she is missing something.  Of course there could be some disagreement between them but we'll see where this goes.  

In the meantime it looks like we'll delay starting anything until this is sorted out.  The idea of doing nothing but watching things closesly is intruiging of course, but also nerve racking!  

We had an interesting trip with UCSF.  Doctor was great, she spent probably 1.5 hours with us discussing this in depth. 

She did agree that INF is a standard treatment option for a IIB classification.  However, she is disagreeing with the staging of this cancer and as a result is suggesting a different approach.

She is not convinced that the tumor that was removed is the primary site (and niether were they in the initial pathology reports or are other doc).  She called it a tumor of unknown primary origin, which is unusual but not uncommon.  May never know where the primary site is, it may not exist anymore.  But to have a subdermal tumor site pop up  as a primary location would be unlikely.  

Even though there is no lymph node involvement, because this is likely a local metastasis she believes it should be staged as a IIIB Melanoma.

With that, she did discuss approaches.

1 – Surveillance only.  Watch everything closely, if / when something comes up, attack it with the current treatment at that time which may be more advanced than where we are at right now.  

2 – INF as we were headed towards

3 – IPI

4 – Clinical trial (none open now)

Her opinion was to go with Surveillance.  She would like to get the tissue samples and have their labs review them to see if they agree on the pathology as well.  

She is going to talk with the Kaiser oncologist today and discuss this with him in case she is missing something.  Of course there could be some disagreement between them but we'll see where this goes.  

In the meantime it looks like we'll delay starting anything until this is sorted out.  The idea of doing nothing but watching things closesly is intruiging of course, but also nerve racking!  

Kaiser in California, Sacramento area.  Will look at the other docs, but being within the Kaiser network does have some potential limitations I guess.  

From our readings (including the video posted earlier) it does sound like there are other treatment options, but some of those like IPPY (sp?) have even more side effects and higher mortality rates. Restulting from the treatments.

Our doctor did say there was a lot of debate around the treatments, sounds like that is certainly the case.  Especially with a IIB diagnosis.  

Kaiser in California, Sacramento area.  Will look at the other docs, but being within the Kaiser network does have some potential limitations I guess.  

From our readings (including the video posted earlier) it does sound like there are other treatment options, but some of those like IPPY (sp?) have even more side effects and higher mortality rates. Restulting from the treatments.

Our doctor did say there was a lot of debate around the treatments, sounds like that is certainly the case.  Especially with a IIB diagnosis.