The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Any advice appreciated

Forums General Melanoma Community Any advice appreciated

  • Post
    SRS
    Participant

      I’ve been looking around this site for a few weeks now and am amazed, sometimes scared, but mostly comforted by the stories and friendly advice given.  I, too, have a story and some questions.

      First, here is my dad’s story:

       At 50-years-old he was diagnosed with Melanoma in August of 2010 with a primary site right in the middle of his back at 0.95 mm deep with no SNB (SNB was discussed, however his initial oncologist decided against it).  With scans and check ups with the oncologist every 6 months, he appeared NED until November 4, 2011.  Early November he developed a baseball size tumor in his left axilla.  Due to what I believe was a lack of education (and maybe a little denial), he went to his primary care doctor who put him on antibiotics for 2 weeks (another case of lack of education).  As soon as I found out that he had been on antibiotics for two weeks I heavily encouraged that he make an appointment with his oncologist (initial). His oncologist, instead of seeing him, referred him straight to the general surgeon who had removed his primary-site melanoma.  During that appointment the general surgeon told him that he didn’t preform axillary dissections and referred him back to the oncologist.  So, almost one month later in December, the oncologist did what should have been done when the tumor appeared early November and confirmed with PET/CT that the melanoma had spread to the left axillary region (no other spread seen).  Almost another month later, December 27, he finally had the complete axillary dissection and was diagnosed stage IIIc.

      Completely unimpressed with the runaround that he was given, we encouraged Dad to move his care to the best within driving distance.  He decided to go with Vanderbilt under the care of Dr. Sosman.  While in the process of waiting for randomization for an Interferon vs. Ipi trial, he developed severe back pain. On January 31, 2012 it was confirmed that Dad had a compression fracture due to lytic melanoma metastasis. On February 13, 2012 PET/CT results showed multiple tumors along the vertebrae (cervical – sacrum), tumor growth back in his left axilla, and multiple tumors in his lung.

      He has had radiation to both his axillary region as well as his lumbar and lower part of his thoracic spine.  

      Dad is BRAF wildtype and as far as I can make out from his report, HLA-A negative. He does have the NRAS mutation.

      Dr. Sosman, after seeing the rapid spread and large tumor burden started him on Carboplatin/Taxol/Avastin February 23.  Zometa starts tomorrow.  He will get his second chemo infusion March 13.  The plan is to scan sometime in the first week of April to see if Dad is a chemo responder.  If so, he’ll complete a 3rd round of chemo before moving on to something else. If not, I understood the plan to be to start Ipi ASAP.  

      I have contacted NIH regarding their TIL trials, as I have read that they are some of the best around.   I was told that Dad is not currently a candidate for TIL due to needing treatment now.  It was relayed that he wouldn’t be able to wait the 4-6 weeks for the TILs to be harvested.

      I have contacted the University of Cincinnati about anti-PLD 1 antibody trials. Dad would have to show progression on any current tx in order to qualify for that study.

      I have contacted MD Anderson regarding trials for MEK 162 for NRAS mutation.  Apparently that trial is on hold.

      QUESTIONS:

      First, Based on my father’s hx with melanoma (brief, rapidly progressing, now heavy tumor burden), does beginning with chemotherapy and Avastin seem appropriate?

      Secondly, where do clinical trials play a role in this treatment process?  I’ve hit quite a few brick walls in seeking out trial options.  Does anyone know of any other institutions that have the TIL trials?

      Any suggestions regarding treatment and clinical trials would be appreciated.

      Thanks so much!

      SRS

    Viewing 8 reply threads
    • Replies
        DonW
        Participant

          SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.

          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/til-do-md-anderson-and-moffitts-results-compare-ni

          As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.

            SRS
            Participant

              Thanks for the link, DonW.  I checked it out and found it helpful.

              SRS
              Participant

                Thanks for the link, DonW.  I checked it out and found it helpful.

                SRS
                Participant

                  Thanks for the link, DonW.  I checked it out and found it helpful.

                DonW
                Participant

                  SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.

                  http://www.melanoma.org/community/mpip-melanoma-patients-information-page/til-do-md-anderson-and-moffitts-results-compare-ni

                  As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.

                  DonW
                  Participant

                    SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.

                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/til-do-md-anderson-and-moffitts-results-compare-ni

                    As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.

                    kylez
                    Participant

                      Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:

                      Trial of MEK Inhibitor and PI3K/mTOR Inhibitor in Subjects With Locally Advanced or Metastatic Solid Tumors

                      Safety, Pharmacokinetics and Pharmacodynamics of BKM120 Plus MEK162 in Selected Advanced Solid Tumor Patients 

                      Safety, Pharmacokinetics and Pharmacodynamics of BEZ235 Plus MEK162 in Selected Advanced Solid Tumor Patients

                        kylez
                        Participant

                          And I'm really sorry you're going through this with your Dad. 

                          One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients. 

                          I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.

                          kylez
                          Participant

                            And I'm really sorry you're going through this with your Dad. 

                            One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients. 

                            I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.

                            kylez
                            Participant

                              And I'm really sorry you're going through this with your Dad. 

                              One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients. 

                              I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.

                              SRS
                              Participant

                                Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                SRS
                                Participant

                                  Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                  kylez
                                  Participant

                                    I don't make a good lab rat at the moment. It's possible I may qualify at some point, but it's not easy for some of us to get in.

                                    kylez
                                    Participant

                                      I don't make a good lab rat at the moment. It's possible I may qualify at some point, but it's not easy for some of us to get in.

                                      kylez
                                      Participant

                                        I don't make a good lab rat at the moment. It's possible I may qualify at some point, but it's not easy for some of us to get in.

                                        SRS
                                        Participant

                                          Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                          SRS
                                          Participant

                                            Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                            SRS
                                            Participant

                                              Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                              SRS
                                              Participant

                                                Wow! Going to email some of the investigators in just a minute.  If you don't mind me asking, why are you waiting to try for that since you are NRAS mutated?

                                              kylez
                                              Participant

                                                Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:

                                                Trial of MEK Inhibitor and PI3K/mTOR Inhibitor in Subjects With Locally Advanced or Metastatic Solid Tumors

                                                Safety, Pharmacokinetics and Pharmacodynamics of BKM120 Plus MEK162 in Selected Advanced Solid Tumor Patients 

                                                Safety, Pharmacokinetics and Pharmacodynamics of BEZ235 Plus MEK162 in Selected Advanced Solid Tumor Patients

                                                kylez
                                                Participant

                                                  Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:

                                                  Trial of MEK Inhibitor and PI3K/mTOR Inhibitor in Subjects With Locally Advanced or Metastatic Solid Tumors

                                                  Safety, Pharmacokinetics and Pharmacodynamics of BKM120 Plus MEK162 in Selected Advanced Solid Tumor Patients 

                                                  Safety, Pharmacokinetics and Pharmacodynamics of BEZ235 Plus MEK162 in Selected Advanced Solid Tumor Patients

                                                  cltml
                                                  Participant

                                                    SRS,

                                                    I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest.  We then went to Moffitt and met with Dr. Weber.  He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs.  The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs.  They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father.  However, as you mention, you may not have time until you get the disease stabilized.

                                                    On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials.  I've noticed that on several trials.  Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons.  Too bad.  Chemo was a waste of time for me.  I am a mixed responder to IL2, and am now on ipi, first infusion.

                                                    My melanoma is indolent so I had some time to make some decisions.  your father's is more aggressive.  I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.

                                                    Best wishes.

                                                    cltml

                                                      SRS
                                                      Participant

                                                        Thanks for considering this, ctlml.  I've also read about Moffitt and others running out of funds for the TIL programs.  We will be checking into other options.

                                                        About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first.  I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care.  I will be checking into this, however, We will be getting to ipi as soon as possible. 

                                                        Thanks again,

                                                        SRS

                                                         

                                                        SRS
                                                        Participant

                                                          Thanks for considering this, ctlml.  I've also read about Moffitt and others running out of funds for the TIL programs.  We will be checking into other options.

                                                          About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first.  I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care.  I will be checking into this, however, We will be getting to ipi as soon as possible. 

                                                          Thanks again,

                                                          SRS

                                                           

                                                          SRS
                                                          Participant

                                                            Thanks for considering this, ctlml.  I've also read about Moffitt and others running out of funds for the TIL programs.  We will be checking into other options.

                                                            About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first.  I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care.  I will be checking into this, however, We will be getting to ipi as soon as possible. 

                                                            Thanks again,

                                                            SRS

                                                             

                                                            cltml
                                                            Participant

                                                              I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall.  Perhaps it was a standard of care in early '11, and not an insurance mandate.

                                                              I do recall seeing it as a requirement for Phase 1 and 2 trials last year  though.

                                                              Good luck srs.

                                                              cltml

                                                              cltml
                                                              Participant

                                                                I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall.  Perhaps it was a standard of care in early '11, and not an insurance mandate.

                                                                I do recall seeing it as a requirement for Phase 1 and 2 trials last year  though.

                                                                Good luck srs.

                                                                cltml

                                                                cltml
                                                                Participant

                                                                  I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall.  Perhaps it was a standard of care in early '11, and not an insurance mandate.

                                                                  I do recall seeing it as a requirement for Phase 1 and 2 trials last year  though.

                                                                  Good luck srs.

                                                                  cltml

                                                                cltml
                                                                Participant

                                                                  SRS,

                                                                  I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest.  We then went to Moffitt and met with Dr. Weber.  He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs.  The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs.  They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father.  However, as you mention, you may not have time until you get the disease stabilized.

                                                                  On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials.  I've noticed that on several trials.  Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons.  Too bad.  Chemo was a waste of time for me.  I am a mixed responder to IL2, and am now on ipi, first infusion.

                                                                  My melanoma is indolent so I had some time to make some decisions.  your father's is more aggressive.  I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.

                                                                  Best wishes.

                                                                  cltml

                                                                  cltml
                                                                  Participant

                                                                    SRS,

                                                                    I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest.  We then went to Moffitt and met with Dr. Weber.  He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs.  The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs.  They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father.  However, as you mention, you may not have time until you get the disease stabilized.

                                                                    On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials.  I've noticed that on several trials.  Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons.  Too bad.  Chemo was a waste of time for me.  I am a mixed responder to IL2, and am now on ipi, first infusion.

                                                                    My melanoma is indolent so I had some time to make some decisions.  your father's is more aggressive.  I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.

                                                                    Best wishes.

                                                                    cltml

                                                                Viewing 8 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics