path report is back

This topic has 39 replies, 4 voices, and was last updated 9 years, 5 months ago by Nanners10.

Post

- January 10, 2016 at 3:05 am
- Quote
jamieth29
Participant
At home recovering well from surgery and thought i would share the results with everyone here. As some of you know i was diagnosed may 2015 3c. I have actually never been n.e.d. since I was diagnosed. I have always had “local” lymph node involvement and many intransit spots that kept coming back on incision line. I was going to have surgery again in August to try and stop intransit legions again but pet scan showed another lymph node was active. I started B-raf inhibitors August 11 after we decided that we needed something to give surgery a chance to stick. watched spots on incision disappear. Path came in and still showed microscopic foci of viable melanoma. However the report said node showed signs of regression. Report states… together these findings demonstrate involvement of the lymph node by multiple foci of metastatic melanoma on a background of melanin containing histiocytes (i.e, melanophages) these findings likely represent partial regression of a metastasis either spontaneous or by treatment. The other 6 nodes were clear. The resection of my leg showed no active cancer. It was a big surgery on my leg the pelvic dissection took 1 hour the leg surgery took 10 hrs. A week and half after I am able to walk with no crutches. I see my doctor Tues to go over report and next steps. He did send me a message the he reviewed with his team and it looks like things came off “well” whatever that means. It has been 3.5 months since I’ve been scanned so I know that will probably be next. Nobody is sure if things will “stick” after all this but I definitely think it’s a good option to try. I think there may be big potential giving braf drugs as a neo adjuvant. Why not if it can kill some cells and a person is resectable or potentially resectable after the drugs why not try. Hopefully this can give me some disease free time and maybe a chance of ned for good. Time will tell I guess. I have been off drugs since Christmas. Tues I am going to talk To Dr Luke about continuing the braf drugs but I think he is not wanting to do that. Anyway there it is…Boom! Maybe this can help someone out there. Any questions ask away. Hope everyone is well.
Jamie

Viewing 11 reply threads

Replies

- - January 10, 2016 at 3:33 am
  - Quote
  Nanners10
  Participant
  Hi Jamie,
  
  Glad to hear that the surgery went well and you are recovering. That was a long one!
  
  I am wondering how you were able to get B-raf inhibitors at stage 3c. Was that through a trial or just with your particular situation of many recurrences?
  
  I hope your appt goes well next week and praying for NED for you for good!
  
  Nancy
- - January 10, 2016 at 3:33 am
  - Quote
  Nanners10
  Participant
  Hi Jamie,
  
  Glad to hear that the surgery went well and you are recovering. That was a long one!
  
  I am wondering how you were able to get B-raf inhibitors at stage 3c. Was that through a trial or just with your particular situation of many recurrences?
  
  I hope your appt goes well next week and praying for NED for you for good!
  
  Nancy
- - January 10, 2016 at 3:33 am
  - Quote
  Nanners10
  Participant
  Hi Jamie,
  
  Glad to hear that the surgery went well and you are recovering. That was a long one!
  
  I am wondering how you were able to get B-raf inhibitors at stage 3c. Was that through a trial or just with your particular situation of many recurrences?
  
  I hope your appt goes well next week and praying for NED for you for good!
  
  Nancy
  - January 10, 2016 at 3:42 am
    
    Quote
    jamieth29
    Participant
    
    Hi Nancy,
    It was kind of a odd situation. I think really in the end it was because i was considered unresectable. Although I believe Doctors can do more than some of us think.
  - January 10, 2016 at 3:42 am
    
    Quote
    jamieth29
    Participant
    
    Hi Nancy,
    It was kind of a odd situation. I think really in the end it was because i was considered unresectable. Although I believe Doctors can do more than some of us think.
  - January 10, 2016 at 3:42 am
    
    Quote
    jamieth29
    Participant
    
    Hi Nancy,
    It was kind of a odd situation. I think really in the end it was because i was considered unresectable. Although I believe Doctors can do more than some of us think.
- - January 10, 2016 at 3:36 pm
  - Quote
  Bubbles
  Participant
  Hey Jamie,
  
  So glad to hear that your surgery went as well as possible and you are up and at'em already!!! Path report doesn't sound bad either!!! Hope your visit with the doc on Tuesday goes well.
  
  Here is an article I just found that is a pretty good review of adjuvant melanoma treatment. (Thought about Nancy, Jenny and others who might find it too!) Two studies with BRAFi as adjuvant for BRAF mutant patients remain underway…treating with vemurafenib (BRIM8) and with dabrafenib/trametinib (COMBI-AD)….at least in the sense that as best as I can find results are still pending. Adjuvant trials take even longer than "advanced disease" trials to determine outcome for a variety of obvious reasons. Anyhow, here's the link: http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma
  
  Then there is this case study that seems pretty relevant to your situation, Jamie (see the last article in attached post): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
  
  Good luck!! Celeste
- - January 10, 2016 at 3:36 pm
  - Quote
  Bubbles
  Participant
  Hey Jamie,
  
  So glad to hear that your surgery went as well as possible and you are up and at'em already!!! Path report doesn't sound bad either!!! Hope your visit with the doc on Tuesday goes well.
  
  Here is an article I just found that is a pretty good review of adjuvant melanoma treatment. (Thought about Nancy, Jenny and others who might find it too!) Two studies with BRAFi as adjuvant for BRAF mutant patients remain underway…treating with vemurafenib (BRIM8) and with dabrafenib/trametinib (COMBI-AD)….at least in the sense that as best as I can find results are still pending. Adjuvant trials take even longer than "advanced disease" trials to determine outcome for a variety of obvious reasons. Anyhow, here's the link: http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma
  
  Then there is this case study that seems pretty relevant to your situation, Jamie (see the last article in attached post): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
  
  Good luck!! Celeste
- - January 10, 2016 at 3:36 pm
  - Quote
  Bubbles
  Participant
  Hey Jamie,
  
  So glad to hear that your surgery went as well as possible and you are up and at'em already!!! Path report doesn't sound bad either!!! Hope your visit with the doc on Tuesday goes well.
  
  Here is an article I just found that is a pretty good review of adjuvant melanoma treatment. (Thought about Nancy, Jenny and others who might find it too!) Two studies with BRAFi as adjuvant for BRAF mutant patients remain underway…treating with vemurafenib (BRIM8) and with dabrafenib/trametinib (COMBI-AD)….at least in the sense that as best as I can find results are still pending. Adjuvant trials take even longer than "advanced disease" trials to determine outcome for a variety of obvious reasons. Anyhow, here's the link: http://www.gotoper.com/publications/ajho/2014/2014nov/adjuvant-therapy-for-high-risk-melanoma
  
  Then there is this case study that seems pretty relevant to your situation, Jamie (see the last article in attached post): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/brafi-better-when-combined-with-or.html
  
  Good luck!! Celeste
  - January 10, 2016 at 4:59 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste,
    I agree there is a bunch of trials ongoing that will be very interesting to see the results. Including the combi AD with braf inhibitors the pd1 trials both against ipi and placebo. Huge huge stuff. I also saw Dr Luke did a webinar over on MIF and referenced your trial at Moffitt with the 70-80% rfs rate. To me those numbers are jaw dropping. He expressed there was not a comparator arm in your study. However it doesn’t take a rocket scientist to figure out they hit on something there. Thanks again for the support and kind word.
    Jamie
  - January 10, 2016 at 4:59 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste,
    I agree there is a bunch of trials ongoing that will be very interesting to see the results. Including the combi AD with braf inhibitors the pd1 trials both against ipi and placebo. Huge huge stuff. I also saw Dr Luke did a webinar over on MIF and referenced your trial at Moffitt with the 70-80% rfs rate. To me those numbers are jaw dropping. He expressed there was not a comparator arm in your study. However it doesn’t take a rocket scientist to figure out they hit on something there. Thanks again for the support and kind word.
    Jamie
  - January 10, 2016 at 4:59 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Celeste,
    I agree there is a bunch of trials ongoing that will be very interesting to see the results. Including the combi AD with braf inhibitors the pd1 trials both against ipi and placebo. Huge huge stuff. I also saw Dr Luke did a webinar over on MIF and referenced your trial at Moffitt with the 70-80% rfs rate. To me those numbers are jaw dropping. He expressed there was not a comparator arm in your study. However it doesn’t take a rocket scientist to figure out they hit on something there. Thanks again for the support and kind word.
    Jamie
  - January 10, 2016 at 7:32 pm
    
    Quote
    jenny22
    Participant
    
    Hi Celeste-
    
    As always thanks for your posts, replys, your time, etc…..
    
    I just read the above link on adjuvant therapy for high risk melanoma…..I must say this onne really gave me pause…..as you know i have done much reseach and reading, but honestly hadnt read any stats like what i just saw…..
    
    The part i am referring to is:
    
    "The development of local or regional recurrence after intital surgical manangement portends an even pooer prognosis…In the Melanoma Surgical Trial a local recurrence was associated with 5 and 10 year survival rates of 9% to 11% and 5% respectively".
    
    I am hoping there is something here i am not seeing clearly. I have always wondered about the varying components of being stage 3B…as it includes several tumor and node categories…and wondered if recurrent 3B is worse than diagnosed intially at 3B.
    
    Maybe i having a bad day, but this really scared me.
    
    I'd welcome any thoughts.
    
    TKS!!!
    
    best,
    
    jenny
  - January 10, 2016 at 7:32 pm
    
    Quote
    jenny22
    Participant
    
    Hi Celeste-
    
    As always thanks for your posts, replys, your time, etc…..
    
    I just read the above link on adjuvant therapy for high risk melanoma…..I must say this onne really gave me pause…..as you know i have done much reseach and reading, but honestly hadnt read any stats like what i just saw…..
    
    The part i am referring to is:
    
    "The development of local or regional recurrence after intital surgical manangement portends an even pooer prognosis…In the Melanoma Surgical Trial a local recurrence was associated with 5 and 10 year survival rates of 9% to 11% and 5% respectively".
    
    I am hoping there is something here i am not seeing clearly. I have always wondered about the varying components of being stage 3B…as it includes several tumor and node categories…and wondered if recurrent 3B is worse than diagnosed intially at 3B.
    
    Maybe i having a bad day, but this really scared me.
    
    I'd welcome any thoughts.
    
    TKS!!!
    
    best,
    
    jenny
  - January 10, 2016 at 7:32 pm
    
    Quote
    jenny22
    Participant
    
    Hi Celeste-
    
    As always thanks for your posts, replys, your time, etc…..
    
    I just read the above link on adjuvant therapy for high risk melanoma…..I must say this onne really gave me pause…..as you know i have done much reseach and reading, but honestly hadnt read any stats like what i just saw…..
    
    The part i am referring to is:
    
    "The development of local or regional recurrence after intital surgical manangement portends an even pooer prognosis…In the Melanoma Surgical Trial a local recurrence was associated with 5 and 10 year survival rates of 9% to 11% and 5% respectively".
    
    I am hoping there is something here i am not seeing clearly. I have always wondered about the varying components of being stage 3B…as it includes several tumor and node categories…and wondered if recurrent 3B is worse than diagnosed intially at 3B.
    
    Maybe i having a bad day, but this really scared me.
    
    I'd welcome any thoughts.
    
    TKS!!!
    
    best,
    
    jenny
  - January 11, 2016 at 4:13 am
    
    Quote
    Nanners10
    Participant
    
    This article actually reports favourably on interferon statistics. Makes what I thought was almost a decision not a decision anymore. Dr. Tarhini is still reporting decent RFS and OS with interferon even after the meta analysis, stating that long follow up time may skew the OS from those original HDI trials.
  - January 11, 2016 at 4:13 am
    
    Quote
    Nanners10
    Participant
    
    This article actually reports favourably on interferon statistics. Makes what I thought was almost a decision not a decision anymore. Dr. Tarhini is still reporting decent RFS and OS with interferon even after the meta analysis, stating that long follow up time may skew the OS from those original HDI trials.
  - January 11, 2016 at 4:13 am
    
    Quote
    Nanners10
    Participant
    
    This article actually reports favourably on interferon statistics. Makes what I thought was almost a decision not a decision anymore. Dr. Tarhini is still reporting decent RFS and OS with interferon even after the meta analysis, stating that long follow up time may skew the OS from those original HDI trials.
- - January 10, 2016 at 7:17 pm
  - Quote
  jenny22
  Participant
  HI Jamie-
  
  So happy to see your post….and even happoier to hear all went well, though it sounds like it was a quite a surgery!
  
  Anxious to hear next steps after you see Dr. Luke…..
  
  For now, rest, take it easy, and then lets hear what next!
  
  All the best,
  
  jenny
- - January 10, 2016 at 7:17 pm
  - Quote
  jenny22
  Participant
  HI Jamie-
  
  So happy to see your post….and even happoier to hear all went well, though it sounds like it was a quite a surgery!
  
  Anxious to hear next steps after you see Dr. Luke…..
  
  For now, rest, take it easy, and then lets hear what next!
  
  All the best,
  
  jenny
- - January 10, 2016 at 7:17 pm
  - Quote
  jenny22
  Participant
  HI Jamie-
  
  So happy to see your post….and even happoier to hear all went well, though it sounds like it was a quite a surgery!
  
  Anxious to hear next steps after you see Dr. Luke…..
  
  For now, rest, take it easy, and then lets hear what next!
  
  All the best,
  
  jenny
  - January 10, 2016 at 7:37 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny and thank you for keeping me in your thoughts it is very appreciated. Tuesday a bunch more info will unfold. Might be back to watch and wait might be looking for a trial might consider ipi. I really wonder what might happen if i just kept riding braf drugs. I had 0 side effects from them. Never even a headache. Not sure the “rules” would let that happen though.
  - January 10, 2016 at 7:37 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny and thank you for keeping me in your thoughts it is very appreciated. Tuesday a bunch more info will unfold. Might be back to watch and wait might be looking for a trial might consider ipi. I really wonder what might happen if i just kept riding braf drugs. I had 0 side effects from them. Never even a headache. Not sure the “rules” would let that happen though.
  - January 10, 2016 at 7:37 pm
    
    Quote
    jamieth29
    Participant
    
    Thanks Jenny and thank you for keeping me in your thoughts it is very appreciated. Tuesday a bunch more info will unfold. Might be back to watch and wait might be looking for a trial might consider ipi. I really wonder what might happen if i just kept riding braf drugs. I had 0 side effects from them. Never even a headache. Not sure the “rules” would let that happen though.
  - January 10, 2016 at 7:49 pm
    
    Quote
    jenny22
    Participant
    
    Jamie-
    
    I will BE VERY interested to hear what you decide and what Dr. Luke has to say about IPI…since if I remember correctly you once said he felt there wasnt much of a statistcal difference taking it as adjuvant treatment or starting based on recurrent or metastaic new disease..(i think your wrote 25 vs 22%).
    
    I am driving myself ABSOLUTLEY crazy trying to decide what to do. Radiation ends tuesday, and in about 2 weeks i see my ONC (pavlick) will have to make some decisions. As you know she is suggesting 1 year of leukine, rather than IPI…
    
    In the interim I think am going to go down to Penn and see Lynn Schuter, and hear her thoughts on IPI at 3MG in my case.
    
    Not sure what they will say about you satying on BRAF drugs, but from reason I will be surprised if they Ok to that.
    
    Cant wait to hear…..
    
    Will be looking for your post on tuedsay. Hope you're feeling ok, and having a relaxing Sunday.
    
    jenny
  - January 10, 2016 at 7:49 pm
    
    Quote
    jenny22
    Participant
    
    Jamie-
    
    I will BE VERY interested to hear what you decide and what Dr. Luke has to say about IPI…since if I remember correctly you once said he felt there wasnt much of a statistcal difference taking it as adjuvant treatment or starting based on recurrent or metastaic new disease..(i think your wrote 25 vs 22%).
    
    I am driving myself ABSOLUTLEY crazy trying to decide what to do. Radiation ends tuesday, and in about 2 weeks i see my ONC (pavlick) will have to make some decisions. As you know she is suggesting 1 year of leukine, rather than IPI…
    
    In the interim I think am going to go down to Penn and see Lynn Schuter, and hear her thoughts on IPI at 3MG in my case.
    
    Not sure what they will say about you satying on BRAF drugs, but from reason I will be surprised if they Ok to that.
    
    Cant wait to hear…..
    
    Will be looking for your post on tuedsay. Hope you're feeling ok, and having a relaxing Sunday.
    
    jenny
  - January 10, 2016 at 7:49 pm
    
    Quote
    jenny22
    Participant
    
    Jamie-
    
    I will BE VERY interested to hear what you decide and what Dr. Luke has to say about IPI…since if I remember correctly you once said he felt there wasnt much of a statistcal difference taking it as adjuvant treatment or starting based on recurrent or metastaic new disease..(i think your wrote 25 vs 22%).
    
    I am driving myself ABSOLUTLEY crazy trying to decide what to do. Radiation ends tuesday, and in about 2 weeks i see my ONC (pavlick) will have to make some decisions. As you know she is suggesting 1 year of leukine, rather than IPI…
    
    In the interim I think am going to go down to Penn and see Lynn Schuter, and hear her thoughts on IPI at 3MG in my case.
    
    Not sure what they will say about you satying on BRAF drugs, but from reason I will be surprised if they Ok to that.
    
    Cant wait to hear…..
    
    Will be looking for your post on tuedsay. Hope you're feeling ok, and having a relaxing Sunday.
    
    jenny
  - January 10, 2016 at 7:50 pm
    
    Quote
    jenny22
    Participant
    
    yikes i was typing tooo fast!!!!! meant to say "for some reason", not from reason!
  - January 10, 2016 at 7:50 pm
    
    Quote
    jenny22
    Participant
    
    yikes i was typing tooo fast!!!!! meant to say "for some reason", not from reason!
  - January 10, 2016 at 7:50 pm
    
    Quote
    jenny22
    Participant
    
    yikes i was typing tooo fast!!!!! meant to say "for some reason", not from reason!
  - January 10, 2016 at 8:28 pm
    
    Quote
    jamieth29
    Participant
    
    Jenny, just watching some football and hanging out with the kids so yes very relaxing thank you. I agree those stats in the link Celeste provided jumped out at me also. I did read the surgical study that the reference came from and didn’t find any wording on those rates plus that is a 20 yr old study. I am pretty sure I will be unable to continue drugs also. You are Correct on Dr Luke’s opinion on giving ipi now or later as it seems to not have a statistical difference in responce rate. However with you just getting radiation it may really be a legit choice. There is evidence of doing the two close together can have a synergistic response. I believe the radiation creates antigens that can help ipi “recognize” the cancer cells and destroy them. At one point I enrolled in the nivo vs ipi adjuvant trial but was kicked off before I even started because of the in transit spots came back. At that point there where no other trials with pd1 or ipi going on. I had mentally committed myself to creating my own little trial by getting ipi at 3mg and going ahead with radiation to me leg. At the time ipi was not approved for stage 3 but doctors could get it if they pushed. Then Dr Luke came up with the braf plan. I have been reluctant to get radiation to me leg because I have had surgeon’s tell that would be it for surgeries there because it would destroy all the tissue. Ipi and radiation are still on the board for me.
  - January 10, 2016 at 8:28 pm
    
    Quote
    jamieth29
    Participant
    
    Jenny, just watching some football and hanging out with the kids so yes very relaxing thank you. I agree those stats in the link Celeste provided jumped out at me also. I did read the surgical study that the reference came from and didn’t find any wording on those rates plus that is a 20 yr old study. I am pretty sure I will be unable to continue drugs also. You are Correct on Dr Luke’s opinion on giving ipi now or later as it seems to not have a statistical difference in responce rate. However with you just getting radiation it may really be a legit choice. There is evidence of doing the two close together can have a synergistic response. I believe the radiation creates antigens that can help ipi “recognize” the cancer cells and destroy them. At one point I enrolled in the nivo vs ipi adjuvant trial but was kicked off before I even started because of the in transit spots came back. At that point there where no other trials with pd1 or ipi going on. I had mentally committed myself to creating my own little trial by getting ipi at 3mg and going ahead with radiation to me leg. At the time ipi was not approved for stage 3 but doctors could get it if they pushed. Then Dr Luke came up with the braf plan. I have been reluctant to get radiation to me leg because I have had surgeon’s tell that would be it for surgeries there because it would destroy all the tissue. Ipi and radiation are still on the board for me.
  - January 10, 2016 at 8:28 pm
    
    Quote
    jamieth29
    Participant
    
    Jenny, just watching some football and hanging out with the kids so yes very relaxing thank you. I agree those stats in the link Celeste provided jumped out at me also. I did read the surgical study that the reference came from and didn’t find any wording on those rates plus that is a 20 yr old study. I am pretty sure I will be unable to continue drugs also. You are Correct on Dr Luke’s opinion on giving ipi now or later as it seems to not have a statistical difference in responce rate. However with you just getting radiation it may really be a legit choice. There is evidence of doing the two close together can have a synergistic response. I believe the radiation creates antigens that can help ipi “recognize” the cancer cells and destroy them. At one point I enrolled in the nivo vs ipi adjuvant trial but was kicked off before I even started because of the in transit spots came back. At that point there where no other trials with pd1 or ipi going on. I had mentally committed myself to creating my own little trial by getting ipi at 3mg and going ahead with radiation to me leg. At the time ipi was not approved for stage 3 but doctors could get it if they pushed. Then Dr Luke came up with the braf plan. I have been reluctant to get radiation to me leg because I have had surgeon’s tell that would be it for surgeries there because it would destroy all the tissue. Ipi and radiation are still on the board for me.
  - January 10, 2016 at 8:43 pm
    
    Quote
    jenny22
    Participant
    
    Thanks Jamie-
    
    I think you are correct about IPI following radiation, which is why I am going to see another Dr just to be very clear on what my options are…..hard to sign up for IPI when niether MSK or Pavlick wants to give it to me!
    
    But equally as hard to agree to Leukine, with no data to support it!
    
    And thanks for clarifying that that was a 20year old study, I was looking for the dates!
    
    I will be curious to hear if you end up doing IPI now, with or without radiation.
    
    Ok, enjoy whats left of Sunday…
    
    Jamie, thanks for all your repsonses!
    
    please keep in touch,
    
    best,
    
    jenny
  - January 10, 2016 at 8:43 pm
    
    Quote
    jenny22
    Participant
    
    Thanks Jamie-
    
    I think you are correct about IPI following radiation, which is why I am going to see another Dr just to be very clear on what my options are…..hard to sign up for IPI when niether MSK or Pavlick wants to give it to me!
    
    But equally as hard to agree to Leukine, with no data to support it!
    
    And thanks for clarifying that that was a 20year old study, I was looking for the dates!
    
    I will be curious to hear if you end up doing IPI now, with or without radiation.
    
    Ok, enjoy whats left of Sunday…
    
    Jamie, thanks for all your repsonses!
    
    please keep in touch,
    
    best,
    
    jenny
  - January 10, 2016 at 8:43 pm
    
    Quote
    jenny22
    Participant
    
    Thanks Jamie-
    
    I think you are correct about IPI following radiation, which is why I am going to see another Dr just to be very clear on what my options are…..hard to sign up for IPI when niether MSK or Pavlick wants to give it to me!
    
    But equally as hard to agree to Leukine, with no data to support it!
    
    And thanks for clarifying that that was a 20year old study, I was looking for the dates!
    
    I will be curious to hear if you end up doing IPI now, with or without radiation.
    
    Ok, enjoy whats left of Sunday…
    
    Jamie, thanks for all your repsonses!
    
    please keep in touch,
    
    best,
    
    jenny
- - January 11, 2016 at 12:12 am
  - Quote
  Bubbles
  Participant
  Hey Guys,
  
  Don't freak out with some of those stats. I only shared that article because it was one of the few good recaps of what has been tried and is ongoing in adjuvant melanoma care. The problem is….they don't compare apples to apples. Yes, some of the dire statistics they quote are from times when ipi, BRAFi and anti-PD1 drugs were not available for treatment so yes…prognosis was even worse then than now!!! AND…you don't have to go very far back in time to reach that point!!! 2010 to be exact…NONE of those treatments were FDA approved for anybody at that time!!! Still, it is very frustrating to be Stage IV/III NED or even inoperable Stage III and not have many treatment options. Adjuvant trials are more in the tabulation stage than the treating patient stage at the moment. Perhaps that will change soon. Additionally, Jamie made a good point in an earlier post. Docs are practicing with FDA approved drugs now. How and for whom they choose to provide them is at their discretion. However, the reality of insurance approval still looms large over most of us. However, as ratties like myself and folks like ????? President Jimmy Carter (whom I presume was actually NED when he started Keytruda as his liver met has been surgically removed and his brain met treated with SRS…not that I am privy to his medical records!) continue to thrive rather than relapse….change will come. I know it is certainly not soon enough for impatient sorts like myself or folks in real need of treatment!!! Hang in there. Celeste
- - January 11, 2016 at 12:12 am
  - Quote
  Bubbles
  Participant
  Hey Guys,
  
  Don't freak out with some of those stats. I only shared that article because it was one of the few good recaps of what has been tried and is ongoing in adjuvant melanoma care. The problem is….they don't compare apples to apples. Yes, some of the dire statistics they quote are from times when ipi, BRAFi and anti-PD1 drugs were not available for treatment so yes…prognosis was even worse then than now!!! AND…you don't have to go very far back in time to reach that point!!! 2010 to be exact…NONE of those treatments were FDA approved for anybody at that time!!! Still, it is very frustrating to be Stage IV/III NED or even inoperable Stage III and not have many treatment options. Adjuvant trials are more in the tabulation stage than the treating patient stage at the moment. Perhaps that will change soon. Additionally, Jamie made a good point in an earlier post. Docs are practicing with FDA approved drugs now. How and for whom they choose to provide them is at their discretion. However, the reality of insurance approval still looms large over most of us. However, as ratties like myself and folks like ????? President Jimmy Carter (whom I presume was actually NED when he started Keytruda as his liver met has been surgically removed and his brain met treated with SRS…not that I am privy to his medical records!) continue to thrive rather than relapse….change will come. I know it is certainly not soon enough for impatient sorts like myself or folks in real need of treatment!!! Hang in there. Celeste
- - January 11, 2016 at 12:12 am
  - Quote
  Bubbles
  Participant
  Hey Guys,
  
  Don't freak out with some of those stats. I only shared that article because it was one of the few good recaps of what has been tried and is ongoing in adjuvant melanoma care. The problem is….they don't compare apples to apples. Yes, some of the dire statistics they quote are from times when ipi, BRAFi and anti-PD1 drugs were not available for treatment so yes…prognosis was even worse then than now!!! AND…you don't have to go very far back in time to reach that point!!! 2010 to be exact…NONE of those treatments were FDA approved for anybody at that time!!! Still, it is very frustrating to be Stage IV/III NED or even inoperable Stage III and not have many treatment options. Adjuvant trials are more in the tabulation stage than the treating patient stage at the moment. Perhaps that will change soon. Additionally, Jamie made a good point in an earlier post. Docs are practicing with FDA approved drugs now. How and for whom they choose to provide them is at their discretion. However, the reality of insurance approval still looms large over most of us. However, as ratties like myself and folks like ????? President Jimmy Carter (whom I presume was actually NED when he started Keytruda as his liver met has been surgically removed and his brain met treated with SRS…not that I am privy to his medical records!) continue to thrive rather than relapse….change will come. I know it is certainly not soon enough for impatient sorts like myself or folks in real need of treatment!!! Hang in there. Celeste

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