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Stage 4 Melanoma Treatment Options

Forums General Melanoma Community Stage 4 Melanoma Treatment Options

  • Post
    GraemeL
    Participant

      Hi MPIP,

      My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

      Hi MPIP,

      My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

      This melanoma was surgically removed on August 15 and Susan is having 10 sessions of whole brain radiotherapy.  My concern is that melanoma cells have now quite likely spread from the brain to other parts of her body.  Her oncologist says that she cannot go back on interferon and that there is no other treatment available.  I have asked about ipilimumab but he thinks that this is not appropriate.

      I would appreciate comments on the best treatment options.  It seems sensible to attack this melanoma now before it gets a chance to establish itself again.  If this highly aggressive melanoma starts growing again Susan's life expectancy could be quite short.

      Kind regards,

      Graeme

    Viewing 5 reply threads
    • Replies
        melmar
        Participant
          If the tumor has been surgically resected, you may want to talk to your doctor about gamma knife radiation to the tumor bed rather than whole brain radiation. Once NED, there is a trial at Moffitt in FL using an anti pd-1 drug that people are having good luck with.
            GraemeL
            Participant

              Dear Anonymous,

              Thank you for your advice.  The tumor has been surgically resected.  Susan has already had 4 out of 10 sessions of full brain radiotherapy so I think it is best to run through to conclusion.

              Anti-PD1 looks promising.  If Susan is NED, will she be eligible for a trial?  My understanding is that trials require evidence of tumors before starting so they can determine what happens to the tumors when the drugs are used.

              Kind regards,

              Graeme

              LynnLuc
              Participant

                I know they have 2 trials at Moffitt using anti pd-1. I know there is openings in the one for people who have measureable disease. I do not know if there is an opening in my trial…which is the one for those who were resected ..I am NED and have remained NED now for 2 years and 5 months   stage 4. I do not know if they accept patients with brain mets in the first trial. Not sure if they know if it can go through the Blood brain barrier. You could write Dr Weber directly and ask about the trial and explain alittle about Susan…his e mail is [email protected]    He is my onc and he is awesome!

                LynnLuc
                Participant

                  I know they have 2 trials at Moffitt using anti pd-1. I know there is openings in the one for people who have measureable disease. I do not know if there is an opening in my trial…which is the one for those who were resected ..I am NED and have remained NED now for 2 years and 5 months   stage 4. I do not know if they accept patients with brain mets in the first trial. Not sure if they know if it can go through the Blood brain barrier. You could write Dr Weber directly and ask about the trial and explain alittle about Susan…his e mail is [email protected]    He is my onc and he is awesome!

                  LynnLuc
                  Participant

                    I know they have 2 trials at Moffitt using anti pd-1. I know there is openings in the one for people who have measureable disease. I do not know if there is an opening in my trial…which is the one for those who were resected ..I am NED and have remained NED now for 2 years and 5 months   stage 4. I do not know if they accept patients with brain mets in the first trial. Not sure if they know if it can go through the Blood brain barrier. You could write Dr Weber directly and ask about the trial and explain alittle about Susan…his e mail is [email protected]    He is my onc and he is awesome!

                    GraemeL
                    Participant

                      Dear Lynn,

                      Thank you for sharing your experience.  Your results are most encouraging and Anti-PD1 looks like the best option if Susan can get access to it.

                      I will contact Dr Weber at Moffitt and see if he is able to help.

                      Appreciate your support,

                      Graeme

                      GraemeL
                      Participant

                        Dear Lynn,

                        I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

                        In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

                        Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

                        My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

                        Thank you very much for this invaluable lead.

                        Warm regards,

                        Graeme

                        GraemeL
                        Participant

                          Dear Lynn,

                          I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

                          In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

                          Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

                          My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

                          Thank you very much for this invaluable lead.

                          Warm regards,

                          Graeme

                          LynnLuc
                          Participant

                            I never took Yervoy ( Ipi) and I was accepted into the trial…I actually had BMS call me about Yervoy. I had emailed them with my concerns about a patient assistance program and they explained about the government in AU …but assured me they were working on an assistance program like they have here in the US…so thats good news!!

                            LynnLuc
                            Participant

                              I never took Yervoy ( Ipi) and I was accepted into the trial…I actually had BMS call me about Yervoy. I had emailed them with my concerns about a patient assistance program and they explained about the government in AU …but assured me they were working on an assistance program like they have here in the US…so thats good news!!

                              LynnLuc
                              Participant

                                I never took Yervoy ( Ipi) and I was accepted into the trial…I actually had BMS call me about Yervoy. I had emailed them with my concerns about a patient assistance program and they explained about the government in AU …but assured me they were working on an assistance program like they have here in the US…so thats good news!!

                                Ashykay
                                Participant

                                  Hi Graeme,

                                  I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

                                  I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

                                  I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

                                  Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

                                  My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

                                  Cheers,

                                  Ashley

                                  GraemeL
                                  Participant

                                    Dear Ashley, 

                                    Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

                                    There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

                                    I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

                                    Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

                                    Warm regards,

                                    Graeme

                                    GraemeL
                                    Participant

                                      Dear Ashley, 

                                      Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

                                      There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

                                      I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

                                      Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

                                      Warm regards,

                                      Graeme

                                      GraemeL
                                      Participant

                                        Dear Ashley, 

                                        Many thanks for your feedback.  Unless there are strong reasons against, Susan will go on Yervoy ASAP and we will just have to carry the cost.  I am trying to get an appointment ASAP with the best melanoma specialist at Peter Mac to arrange this.  I will ask him to place Susan on the Yervoy PAP as this is only accessible to medical professionals. 

                                        There are a lot of parallels between your mother’s case and Susan’s.  Susan is also BRAF Negative so Yervoy is the only real option now that Interferon is toxic to her.  As I see it Susan’s only chance is to get on Yervoy early before this melanoma has a chance to grow again.  It grew to a 31x27x22mm tumour in under 5 months (Undetectable in MRI scan on 20 March to CT scan on 13 August) so it will be unstoppable if it gets a grip on her.  This melanoma is very aggressive.

                                        I have already been in touch with Dr Jeff Weber at Moffitt Cancer Center in Florida and would be interested in contacting the professors at Dana-Faber if you are able to provide contact details.  So far all my inquiries indicate that Ipilimumab is the best strategy now, possibly followed by the new Anti-PD1 drugs on trial when these become available.

                                        Please email you phone number to me at [email protected] as I would like to discuss your experience in more detail.

                                        Warm regards,

                                        Graeme

                                        Ashykay
                                        Participant

                                          Hi Graeme,

                                          I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

                                          I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

                                          I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

                                          Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

                                          My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

                                          Cheers,

                                          Ashley

                                          Ashykay
                                          Participant

                                            Hi Graeme,

                                            I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

                                            I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

                                            I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

                                            Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

                                            My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

                                            Cheers,

                                            Ashley

                                            GraemeL
                                            Participant

                                              Dear Lynn,

                                              I sent an email to Dr Weber and he replied straight away.  Please pass on my appreciation when you see him.  Subject to checks for suitability etc, it seems that ipilimumab is the best available treatment for Susan at this stage.  This is the drug that Susan was going to go on (trial basis) if she was at Stage 4 last year, but she had to have interferon because she was Stage 3 then.  Anti-PD1 trials are restricted to patients who have failed ipilimumab treatment.

                                              In addition we live in Melbourne Australia and while we are prepared to fly to the US and pay for treatment, there are issues requiring US health insurance.

                                              Due to the high cost ipilimumab is not yet approved for use in Australia by the government authority.  I have been in contact with Bristoy Myers Squibb in Melbourne and they have advised that there is a Yervoy patient access program.  This allows Australian residents to access Yervoy on a full cost basis.

                                              My next step is to find a specialist melanoma oncologist who has real experience with ipilimumab and, subject to the usual checks, arrange for Susan to be given it as quickly as possible.

                                              Thank you very much for this invaluable lead.

                                              Warm regards,

                                              Graeme

                                              GraemeL
                                              Participant

                                                Dear Lynn,

                                                Thank you for sharing your experience.  Your results are most encouraging and Anti-PD1 looks like the best option if Susan can get access to it.

                                                I will contact Dr Weber at Moffitt and see if he is able to help.

                                                Appreciate your support,

                                                Graeme

                                                GraemeL
                                                Participant

                                                  Dear Lynn,

                                                  Thank you for sharing your experience.  Your results are most encouraging and Anti-PD1 looks like the best option if Susan can get access to it.

                                                  I will contact Dr Weber at Moffitt and see if he is able to help.

                                                  Appreciate your support,

                                                  Graeme

                                                  GraemeL
                                                  Participant

                                                    Dear Anonymous,

                                                    Thank you for your advice.  The tumor has been surgically resected.  Susan has already had 4 out of 10 sessions of full brain radiotherapy so I think it is best to run through to conclusion.

                                                    Anti-PD1 looks promising.  If Susan is NED, will she be eligible for a trial?  My understanding is that trials require evidence of tumors before starting so they can determine what happens to the tumors when the drugs are used.

                                                    Kind regards,

                                                    Graeme

                                                    GraemeL
                                                    Participant

                                                      Dear Anonymous,

                                                      Thank you for your advice.  The tumor has been surgically resected.  Susan has already had 4 out of 10 sessions of full brain radiotherapy so I think it is best to run through to conclusion.

                                                      Anti-PD1 looks promising.  If Susan is NED, will she be eligible for a trial?  My understanding is that trials require evidence of tumors before starting so they can determine what happens to the tumors when the drugs are used.

                                                      Kind regards,

                                                      Graeme

                                                      lhaley
                                                      Participant

                                                        I believe there is a trial with  MEK in Nashville (Sally Tannen)   I wasn't elegible  because of the brain met because you have to wait 3 months – mine is too progressive right now.  It would be worth a call and start the paperwork.

                                                         

                                                        I am surprised they did't do gamma first.    My first brain met was OCT 4th and not operaple because of the area.   SRS shrunk it enough and in Feb they did the surgery.  2 more came back in June and did SRS but ended up bleeding.  A few more have now seeded and am now on zeboraf.  They've been able reduce my dex (started the drug on Thursday) and so far I'm handlng the lower dex.    A few weeks ago I could not read, write ect.   Yesterday I read almost 200 pages of a novel.   

                                                         

                                                        We never know what will bring us.    Oh yeah,  my husband is about to drive me to go and quilt with my friends today!

                                                        Good luck,

                                                        Linda

                                                        GraemeL
                                                        Participant

                                                          Dear Linda,

                                                          Susan is BRAF Negative and I think MEK treatment is for BRAF Positive melanomas.  Please advise if this is correct or not.  If this is suitable for Susan, Sally Tannen's contact details would be appreciated.

                                                          Note that Susan presented at the hospital on Monday afternoon August 13 with pressure on the brain and was quite unwell.  They reduced the pressure with intravenous dexamethazone and did further scans.  The neurosurgeon bumped another patient off his next surgery list and operated on Susan at 7.30 on Wednesday morning.  If he hadn't operated Susan only had weeks to live.  It was just fortunate that it was in a position where it could be accessed and removed so quickly.

                                                          All the best and enjoy the quilting,

                                                          Graeme

                                                          GraemeL
                                                          Participant

                                                            Dear Linda,

                                                            Susan is BRAF Negative and I think MEK treatment is for BRAF Positive melanomas.  Please advise if this is correct or not.  If this is suitable for Susan, Sally Tannen's contact details would be appreciated.

                                                            Note that Susan presented at the hospital on Monday afternoon August 13 with pressure on the brain and was quite unwell.  They reduced the pressure with intravenous dexamethazone and did further scans.  The neurosurgeon bumped another patient off his next surgery list and operated on Susan at 7.30 on Wednesday morning.  If he hadn't operated Susan only had weeks to live.  It was just fortunate that it was in a position where it could be accessed and removed so quickly.

                                                            All the best and enjoy the quilting,

                                                            Graeme

                                                            lhaley
                                                            Participant

                                                              My friend is in one of the trials there with Mek and is not Braf + but he does not have brain mets.    I will look up the info and e-mail it to you.  It can't hurt to look into it!   He  has been in the this trial for over 2 years so it might be another one now.

                                                              They didn't originally do the crainectomy because it was deep , large and in the speech area, they didn't think I would have the speech afterwards.   Once they were able to operate a few months later the nuro stopped in several times late in the night just to sit and talk – he is not the social type but was so excited that I couldn't stop talking!

                                                              Linda

                                                              lhaley
                                                              Participant

                                                                My friend is in one of the trials there with Mek and is not Braf + but he does not have brain mets.    I will look up the info and e-mail it to you.  It can't hurt to look into it!   He  has been in the this trial for over 2 years so it might be another one now.

                                                                They didn't originally do the crainectomy because it was deep , large and in the speech area, they didn't think I would have the speech afterwards.   Once they were able to operate a few months later the nuro stopped in several times late in the night just to sit and talk – he is not the social type but was so excited that I couldn't stop talking!

                                                                Linda

                                                                lhaley
                                                                Participant

                                                                  My friend is in one of the trials there with Mek and is not Braf + but he does not have brain mets.    I will look up the info and e-mail it to you.  It can't hurt to look into it!   He  has been in the this trial for over 2 years so it might be another one now.

                                                                  They didn't originally do the crainectomy because it was deep , large and in the speech area, they didn't think I would have the speech afterwards.   Once they were able to operate a few months later the nuro stopped in several times late in the night just to sit and talk – he is not the social type but was so excited that I couldn't stop talking!

                                                                  Linda

                                                                  JerryfromFauq
                                                                  Participant

                                                                    Linda, he did know about your background as a teacher didn't he?

                                                                    JerryfromFauq
                                                                    Participant

                                                                      Linda, he did know about your background as a teacher didn't he?

                                                                      JerryfromFauq
                                                                      Participant

                                                                        Linda, he did know about your background as a teacher didn't he?

                                                                        GraemeL
                                                                        Participant

                                                                          Dear Linda,

                                                                          We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

                                                                          This is a real tribute to the skill of her neurosurgeon.

                                                                          Cheers,

                                                                          Graeme

                                                                          GraemeL
                                                                          Participant

                                                                            Dear Linda,

                                                                            We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

                                                                            This is a real tribute to the skill of her neurosurgeon.

                                                                            Cheers,

                                                                            Graeme

                                                                            GraemeL
                                                                            Participant

                                                                              Dear Linda,

                                                                              We had a similar experience.  Susan had a major operation to remove a large tumor on Wednesday morning two weeks ago and late Thursday afternoon her oncologist walked into her room to find Susan having an animated game of Scrabble with my son and daughter.  You should have seen his face as he came in and realised what was happening.

                                                                              This is a real tribute to the skill of her neurosurgeon.

                                                                              Cheers,

                                                                              Graeme

                                                                              GraemeL
                                                                              Participant

                                                                                Dear Linda,

                                                                                Susan is BRAF Negative and I think MEK treatment is for BRAF Positive melanomas.  Please advise if this is correct or not.  If this is suitable for Susan, Sally Tannen's contact details would be appreciated.

                                                                                Note that Susan presented at the hospital on Monday afternoon August 13 with pressure on the brain and was quite unwell.  They reduced the pressure with intravenous dexamethazone and did further scans.  The neurosurgeon bumped another patient off his next surgery list and operated on Susan at 7.30 on Wednesday morning.  If he hadn't operated Susan only had weeks to live.  It was just fortunate that it was in a position where it could be accessed and removed so quickly.

                                                                                All the best and enjoy the quilting,

                                                                                Graeme

                                                                                lhaley
                                                                                Participant

                                                                                  I believe there is a trial with  MEK in Nashville (Sally Tannen)   I wasn't elegible  because of the brain met because you have to wait 3 months – mine is too progressive right now.  It would be worth a call and start the paperwork.

                                                                                   

                                                                                  I am surprised they did't do gamma first.    My first brain met was OCT 4th and not operaple because of the area.   SRS shrunk it enough and in Feb they did the surgery.  2 more came back in June and did SRS but ended up bleeding.  A few more have now seeded and am now on zeboraf.  They've been able reduce my dex (started the drug on Thursday) and so far I'm handlng the lower dex.    A few weeks ago I could not read, write ect.   Yesterday I read almost 200 pages of a novel.   

                                                                                   

                                                                                  We never know what will bring us.    Oh yeah,  my husband is about to drive me to go and quilt with my friends today!

                                                                                  Good luck,

                                                                                  Linda

                                                                                  lhaley
                                                                                  Participant

                                                                                    I believe there is a trial with  MEK in Nashville (Sally Tannen)   I wasn't elegible  because of the brain met because you have to wait 3 months – mine is too progressive right now.  It would be worth a call and start the paperwork.

                                                                                     

                                                                                    I am surprised they did't do gamma first.    My first brain met was OCT 4th and not operaple because of the area.   SRS shrunk it enough and in Feb they did the surgery.  2 more came back in June and did SRS but ended up bleeding.  A few more have now seeded and am now on zeboraf.  They've been able reduce my dex (started the drug on Thursday) and so far I'm handlng the lower dex.    A few weeks ago I could not read, write ect.   Yesterday I read almost 200 pages of a novel.   

                                                                                     

                                                                                    We never know what will bring us.    Oh yeah,  my husband is about to drive me to go and quilt with my friends today!

                                                                                    Good luck,

                                                                                    Linda

                                                                                  melmar
                                                                                  Participant
                                                                                    If the tumor has been surgically resected, you may want to talk to your doctor about gamma knife radiation to the tumor bed rather than whole brain radiation. Once NED, there is a trial at Moffitt in FL using an anti pd-1 drug that people are having good luck with.
                                                                                    melmar
                                                                                    Participant
                                                                                      If the tumor has been surgically resected, you may want to talk to your doctor about gamma knife radiation to the tumor bed rather than whole brain radiation. Once NED, there is a trial at Moffitt in FL using an anti pd-1 drug that people are having good luck with.
                                                                                      JerryfromFauq
                                                                                      Participant

                                                                                        Hopefully no more brain tumors show up.  Tremodar might help prevent/stop further brain tumor action.  I would look at anti-PD1 for assistance if a source can be found.   In your wife's case I would not look further at Interferon as an option.  It looks  like she might be in the 9% category of those whose melanoma is excerbated by interferon rather than the 5% whose immune system gets the 50 fold boast. 

                                                                                           Ipi is another type of immunology treatment than is the Interferon, and can have very serious side effects.  Your Oncologist is likely scared of these side effects based on her interferon experience.

                                                                                         

                                                                                        Prayinf for you both.

                                                                                          GraemeL
                                                                                          Participant

                                                                                            Dear Jerry,

                                                                                            Appreciate your feedback.  I will ask about Tremodar and Anti-PD1.

                                                                                            Interferon is out because Susan had a suicidal psychiatric breakdown and had to be taken off the treatment.  She went on sertraline to prevent depression then after one month slowly resumed interferon.  Susan had a toxic reaction to the interferon and ended up like a stroke victim.  Again she had to be taken off interferon, and there were other incidents following.  Fortunately she recovered from this but her strength did not return.

                                                                                            Despite this my assessment is that Susan had about 70% of the full treatment and that the interferon worked.  As I see it one cell went through to the brain and was protected by the blood/brain barrier where intreferon is not effective.  This would not have been an orphan, and I think that melanoma cells that went to other parts of her body were eliminated by the interferon treatment.  I also suspect that the cell in the brain was suppressed by the interferon due to leakage across the blood/brain barrier, so it was undetectable in March when interferon stopped and the MRI scan was done.  It grew rapidly afterwards.  A recent core body CT scan came up clear and Susan has a full body PET scan due in October.

                                                                                            You may be right about Ipi as her oncologist is very concerned about the side effects after the experience with interferon.  He mentioned at one session that he hasn't killed anyone with drugs yet.

                                                                                            All the best,

                                                                                            Graeme

                                                                                            NYKaren
                                                                                            Participant

                                                                                              Hi Graeme,

                                                                                              I have a history of depression and interferon was out of the question for me.

                                                                                              However, I did receive ipi (twice!) and although I did experience other side-effects, depression was not one of them.

                                                                                              is Susan's onc. a melanoma expert?   I think the key to  managing ipi side-effects is in the knowledge/expertise of your doctor.  I would never, ever want to be anyone's guinee(sp??) pig with respect to ipi.  It took my onc's expertise to cure me of ipi-induced colitis and then my onc/endo to cure of me of resultant adrenal insufficiency.   I was a partial responder to ipi both times, and many people are complete-responders. 

                                                                                              I am currently on Temodar (only side effect so far is fatigue…going for blood work/onc visit on Thursday) in the hopes that it, and perhaps additional chemo drugs, will "hold me" until i can get into an Anti PD-1 trial, or until it's FDA approved.

                                                                                              All the best,

                                                                                              karen

                                                                                              NYKaren
                                                                                              Participant

                                                                                                Hi Graeme,

                                                                                                I have a history of depression and interferon was out of the question for me.

                                                                                                However, I did receive ipi (twice!) and although I did experience other side-effects, depression was not one of them.

                                                                                                is Susan's onc. a melanoma expert?   I think the key to  managing ipi side-effects is in the knowledge/expertise of your doctor.  I would never, ever want to be anyone's guinee(sp??) pig with respect to ipi.  It took my onc's expertise to cure me of ipi-induced colitis and then my onc/endo to cure of me of resultant adrenal insufficiency.   I was a partial responder to ipi both times, and many people are complete-responders. 

                                                                                                I am currently on Temodar (only side effect so far is fatigue…going for blood work/onc visit on Thursday) in the hopes that it, and perhaps additional chemo drugs, will "hold me" until i can get into an Anti PD-1 trial, or until it's FDA approved.

                                                                                                All the best,

                                                                                                karen

                                                                                                GraemeL
                                                                                                Participant

                                                                                                  Dear Karen,

                                                                                                  Thank you for your tip on getting a melanoma expert.  I am using my connections to track down the best melanoma expert in the area as I agree that real expertise is essential.

                                                                                                  It is interesting that you have had so much trouble with ipilimumab, as I have been told that the side effects of ipi are much less than those of interferon.

                                                                                                  Temodar looks good as holding action until Anti-PD1 can be accessed.

                                                                                                  Best wishes,

                                                                                                  Graeme

                                                                                                  GraemeL
                                                                                                  Participant

                                                                                                    Dear Karen,

                                                                                                    Thank you for your tip on getting a melanoma expert.  I am using my connections to track down the best melanoma expert in the area as I agree that real expertise is essential.

                                                                                                    It is interesting that you have had so much trouble with ipilimumab, as I have been told that the side effects of ipi are much less than those of interferon.

                                                                                                    Temodar looks good as holding action until Anti-PD1 can be accessed.

                                                                                                    Best wishes,

                                                                                                    Graeme

                                                                                                    NYKaren
                                                                                                    Participant
                                                                                                      It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                      I’ll update my Temodar status after Thursday.
                                                                                                      All the best,
                                                                                                      Karen
                                                                                                      NYKaren
                                                                                                      Participant
                                                                                                        It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                        I’ll update my Temodar status after Thursday.
                                                                                                        All the best,
                                                                                                        Karen
                                                                                                        NYKaren
                                                                                                        Participant
                                                                                                          It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                          I’ll update my Temodar status after Thursday.
                                                                                                          All the best,
                                                                                                          Karen
                                                                                                          NYKaren
                                                                                                          Participant
                                                                                                            It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                            I’ll update my Temodar status after Thursday.
                                                                                                            All the best,
                                                                                                            Karen
                                                                                                            NYKaren
                                                                                                            Participant
                                                                                                              It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                              I’ll update my Temodar status after Thursday.
                                                                                                              All the best,
                                                                                                              Karen
                                                                                                              NYKaren
                                                                                                              Participant
                                                                                                                It’s different for everyone. The first time all I had were a pretty bothersome rash and well-controlled diahrrea. It was the reinduction that did me in and they were a year apart. On the other hand, I went through IL-2 like a champ! (interleukin 2 –very harsh treatment)
                                                                                                                I’ll update my Temodar status after Thursday.
                                                                                                                All the best,
                                                                                                                Karen
                                                                                                                LynnLuc
                                                                                                                Participant

                                                                                                                  Temodar along with radiation did hold my melanoma from spreading and growing from July 09 to about Jan 2010. They told me at the Mayo Clinic in Minnesota it should last about 5-7 months and then its useless.

                                                                                                                  GraemeL
                                                                                                                  Participant

                                                                                                                    Dear Lynn,

                                                                                                                    At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

                                                                                                                    The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

                                                                                                                    Warm regards,

                                                                                                                    Graeme

                                                                                                                    GraemeL
                                                                                                                    Participant

                                                                                                                      Dear Lynn,

                                                                                                                      At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

                                                                                                                      The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

                                                                                                                      Warm regards,

                                                                                                                      Graeme

                                                                                                                      GraemeL
                                                                                                                      Participant

                                                                                                                        Dear Lynn,

                                                                                                                        At present Susan has no detectable growths based on CT scans of her head and core body.  She is scheduled for a full body PET scan in October.  I want her to be treated with Ipilimumab to target any undetectable melanoma cells or growths in her body before they get out of control.  This is a long shot, but as I see it this is the only chance she has.  This melanoma grows so fast that by the time it is found it will be uncontrollable.

                                                                                                                        The hope I have is that Interferon appears to have cleaned up melanoma cells in her body, but it could not work across the blood/brain barrier resulting in this tumor.  There is a chance that this melanoma is vulnerable if it is hit hard and hit early enough.  That is the role of Ipilimumab.

                                                                                                                        Warm regards,

                                                                                                                        Graeme

                                                                                                                        LynnLuc
                                                                                                                        Participant

                                                                                                                          Temodar along with radiation did hold my melanoma from spreading and growing from July 09 to about Jan 2010. They told me at the Mayo Clinic in Minnesota it should last about 5-7 months and then its useless.

                                                                                                                          LynnLuc
                                                                                                                          Participant

                                                                                                                            Temodar along with radiation did hold my melanoma from spreading and growing from July 09 to about Jan 2010. They told me at the Mayo Clinic in Minnesota it should last about 5-7 months and then its useless.

                                                                                                                            GraemeL
                                                                                                                            Participant

                                                                                                                              Dear Karen,

                                                                                                                              Thank you for your tip on getting a melanoma expert.  I am using my connections to track down the best melanoma expert in the area as I agree that real expertise is essential.

                                                                                                                              It is interesting that you have had so much trouble with ipilimumab, as I have been told that the side effects of ipi are much less than those of interferon.

                                                                                                                              Temodar looks good as holding action until Anti-PD1 can be accessed.

                                                                                                                              Best wishes,

                                                                                                                              Graeme

                                                                                                                              NYKaren
                                                                                                                              Participant

                                                                                                                                Hi Graeme,

                                                                                                                                I have a history of depression and interferon was out of the question for me.

                                                                                                                                However, I did receive ipi (twice!) and although I did experience other side-effects, depression was not one of them.

                                                                                                                                is Susan's onc. a melanoma expert?   I think the key to  managing ipi side-effects is in the knowledge/expertise of your doctor.  I would never, ever want to be anyone's guinee(sp??) pig with respect to ipi.  It took my onc's expertise to cure me of ipi-induced colitis and then my onc/endo to cure of me of resultant adrenal insufficiency.   I was a partial responder to ipi both times, and many people are complete-responders. 

                                                                                                                                I am currently on Temodar (only side effect so far is fatigue…going for blood work/onc visit on Thursday) in the hopes that it, and perhaps additional chemo drugs, will "hold me" until i can get into an Anti PD-1 trial, or until it's FDA approved.

                                                                                                                                All the best,

                                                                                                                                karen

                                                                                                                                GraemeL
                                                                                                                                Participant

                                                                                                                                  Dear Jerry,

                                                                                                                                  Appreciate your feedback.  I will ask about Tremodar and Anti-PD1.

                                                                                                                                  Interferon is out because Susan had a suicidal psychiatric breakdown and had to be taken off the treatment.  She went on sertraline to prevent depression then after one month slowly resumed interferon.  Susan had a toxic reaction to the interferon and ended up like a stroke victim.  Again she had to be taken off interferon, and there were other incidents following.  Fortunately she recovered from this but her strength did not return.

                                                                                                                                  Despite this my assessment is that Susan had about 70% of the full treatment and that the interferon worked.  As I see it one cell went through to the brain and was protected by the blood/brain barrier where intreferon is not effective.  This would not have been an orphan, and I think that melanoma cells that went to other parts of her body were eliminated by the interferon treatment.  I also suspect that the cell in the brain was suppressed by the interferon due to leakage across the blood/brain barrier, so it was undetectable in March when interferon stopped and the MRI scan was done.  It grew rapidly afterwards.  A recent core body CT scan came up clear and Susan has a full body PET scan due in October.

                                                                                                                                  You may be right about Ipi as her oncologist is very concerned about the side effects after the experience with interferon.  He mentioned at one session that he hasn't killed anyone with drugs yet.

                                                                                                                                  All the best,

                                                                                                                                  Graeme

                                                                                                                                  GraemeL
                                                                                                                                  Participant

                                                                                                                                    Dear Jerry,

                                                                                                                                    Appreciate your feedback.  I will ask about Tremodar and Anti-PD1.

                                                                                                                                    Interferon is out because Susan had a suicidal psychiatric breakdown and had to be taken off the treatment.  She went on sertraline to prevent depression then after one month slowly resumed interferon.  Susan had a toxic reaction to the interferon and ended up like a stroke victim.  Again she had to be taken off interferon, and there were other incidents following.  Fortunately she recovered from this but her strength did not return.

                                                                                                                                    Despite this my assessment is that Susan had about 70% of the full treatment and that the interferon worked.  As I see it one cell went through to the brain and was protected by the blood/brain barrier where intreferon is not effective.  This would not have been an orphan, and I think that melanoma cells that went to other parts of her body were eliminated by the interferon treatment.  I also suspect that the cell in the brain was suppressed by the interferon due to leakage across the blood/brain barrier, so it was undetectable in March when interferon stopped and the MRI scan was done.  It grew rapidly afterwards.  A recent core body CT scan came up clear and Susan has a full body PET scan due in October.

                                                                                                                                    You may be right about Ipi as her oncologist is very concerned about the side effects after the experience with interferon.  He mentioned at one session that he hasn't killed anyone with drugs yet.

                                                                                                                                    All the best,

                                                                                                                                    Graeme

                                                                                                                                  JerryfromFauq
                                                                                                                                  Participant

                                                                                                                                    Hopefully no more brain tumors show up.  Tremodar might help prevent/stop further brain tumor action.  I would look at anti-PD1 for assistance if a source can be found.   In your wife's case I would not look further at Interferon as an option.  It looks  like she might be in the 9% category of those whose melanoma is excerbated by interferon rather than the 5% whose immune system gets the 50 fold boast. 

                                                                                                                                       Ipi is another type of immunology treatment than is the Interferon, and can have very serious side effects.  Your Oncologist is likely scared of these side effects based on her interferon experience.

                                                                                                                                     

                                                                                                                                    Prayinf for you both.

                                                                                                                                    JerryfromFauq
                                                                                                                                    Participant

                                                                                                                                      Hopefully no more brain tumors show up.  Tremodar might help prevent/stop further brain tumor action.  I would look at anti-PD1 for assistance if a source can be found.   In your wife's case I would not look further at Interferon as an option.  It looks  like she might be in the 9% category of those whose melanoma is excerbated by interferon rather than the 5% whose immune system gets the 50 fold boast. 

                                                                                                                                         Ipi is another type of immunology treatment than is the Interferon, and can have very serious side effects.  Your Oncologist is likely scared of these side effects based on her interferon experience.

                                                                                                                                       

                                                                                                                                      Prayinf for you both.

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