Mother diagnosed Stage 3c

Forums General Melanoma Community Mother diagnosed Stage 3c

  • Post
    RobinS
    Participant

      My mother is a very healthy 79 year old who was diagnosed with stage 3c Melanoma with 9 lymph nodes with tumors and extracapsular extension where cells had left the lymph node capsule.  She is going to start radiation and the recommended follow-up treatment is a 1-year schedule of interferon. At 79, my mother doesn't want to do the interferon given its limited success (10% have a delay in recurrence) and potential for a year of flu-like symptoms.  Does anyone have information about the treatment plan and side effects of vaccines that have been in clinical trials?

      My mother is a very healthy 79 year old who was diagnosed with stage 3c Melanoma with 9 lymph nodes with tumors and extracapsular extension where cells had left the lymph node capsule.  She is going to start radiation and the recommended follow-up treatment is a 1-year schedule of interferon. At 79, my mother doesn't want to do the interferon given its limited success (10% have a delay in recurrence) and potential for a year of flu-like symptoms.  Does anyone have information about the treatment plan and side effects of vaccines that have been in clinical trials?  I appreciate any insight s you can share.  Thank you!

    Viewing 8 reply threads
    • Replies
        Janner
        Participant
          My Dad was originally diagnosed stage II at age 81. We didn’t do the SNB to check his lymph nodes because he didn’t want a big surgery and I knew I’d never recommend Interferon for him at his age and given the stats. He’s stage III now with lymph node involvement and we are again contemplating surgery. However, it is 6 years later and there are more choices now for treatment. Clinical trials are worth checking into but be aware there may be age limitations and other disqualifying health factors. For my dad, age has probably been a good factor because things have moved quite slowly. He won’t be pursuing ant treatment other than surgery at this point and even that is questionable. Good luck on finding something that makes sense for your Mom. The standard of care isn’t always the best choice for everyone including the older population. Is she seeing a melanoma specialist?
          Best wishes,
          Janner
          Janner
          Participant
            My Dad was originally diagnosed stage II at age 81. We didn’t do the SNB to check his lymph nodes because he didn’t want a big surgery and I knew I’d never recommend Interferon for him at his age and given the stats. He’s stage III now with lymph node involvement and we are again contemplating surgery. However, it is 6 years later and there are more choices now for treatment. Clinical trials are worth checking into but be aware there may be age limitations and other disqualifying health factors. For my dad, age has probably been a good factor because things have moved quite slowly. He won’t be pursuing ant treatment other than surgery at this point and even that is questionable. Good luck on finding something that makes sense for your Mom. The standard of care isn’t always the best choice for everyone including the older population. Is she seeing a melanoma specialist?
            Best wishes,
            Janner
            Janner
            Participant
              My Dad was originally diagnosed stage II at age 81. We didn’t do the SNB to check his lymph nodes because he didn’t want a big surgery and I knew I’d never recommend Interferon for him at his age and given the stats. He’s stage III now with lymph node involvement and we are again contemplating surgery. However, it is 6 years later and there are more choices now for treatment. Clinical trials are worth checking into but be aware there may be age limitations and other disqualifying health factors. For my dad, age has probably been a good factor because things have moved quite slowly. He won’t be pursuing ant treatment other than surgery at this point and even that is questionable. Good luck on finding something that makes sense for your Mom. The standard of care isn’t always the best choice for everyone including the older population. Is she seeing a melanoma specialist?
              Best wishes,
              Janner
                RobinS
                Participant

                  Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

                  Good luck to you and your Dad  –  I wish you the very best.

                  RobinS
                  Participant

                    Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

                    Good luck to you and your Dad  –  I wish you the very best.

                    RobinS
                    Participant

                      Thank you – my Mom is seeing a Melanoma specialist at the Cleveland Clinic.  I think he is aware of the options but he is not really aggressive.  I also don't believe Cleveland has a multi-disciplinary melanoma team and there has been no tumor board.

                      Good luck to you and your Dad  –  I wish you the very best.

                    Linny
                    Participant

                      I'm sorry to hear of your mom's diagnosis.

                      Is she being seen at a melanoma center? If not, then it won't hurt for her to get a second opinion from a doctor at a melanoma center (i.e., MD Anderson, Moffitt, Johns Hopkins, Sloan Kettering, etc.). The doctors there are going to be the most up to speed on treatments and be able to give her information on clinical trials for which she may qualify.

                      I'm surprised that Yervoy was not offered as an option for your mother.

                      The only melanoma vaccines I'm aware of are available only through a clinical trial. I'm Stage III and am on one now for a vaccine but that trial is no longer accepting new patients. The side effects are very tolerable.

                      Johns Hopkins is holding a trial for a vaccine:

                      J1112: A FEASIBILITY AND TOXICITY STUDY OF A GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) ADMINISTERED ALONE OR IN COMBINATION WITH CYCLOPHOSPHAMIDE IN SUBJECTS WITH SURGICALLY RESECTED AT-RISK MELANOMA
                      This melanoma vaccine trial is a phase I study for patients with stage IIB, IIC, III or IV melanoma who have undergone complete surgical resection but who are at risk for developing recurrence of their disease.  Melanoma GVAX is an investigational vaccine designed to teach the immune system to recognize and eliminate melanoma tumors, which may persist at a microscopic level after surgery.  In this study, some patients will receive Melanoma GVAX alone (low dose or high dose), while others will receive Melanoma GVAX plus low-dose cyclophosphamide. Cyclophosphamide is a chemotherapy frequently used in cancer treatment.  In this study, it will be given at a low dose to try to augment the effects of the vaccine.  The purpose of this study is to find the optimal dose of Melanoma GVAX, with or without cyclophosphamide, that is safe and that produces an immune response.  The vaccine will be given in the skin monthly for four doses.  Eligible patients must be ≥18 years old with melanoma arising in the skin or mucous membranes (such as the nostrils, mouth, or rectum) that has been completely resected at least 2 weeks but no more than 6 months prior to receiving the first treatment on this trial.  Patients with melanomas arising in the eye (ocular) are not eligible.  Participants must not have hepatitis, HIV, or any history of an immune disorder.  Patients must not have received any type of cancer immunotherapy, such as interleukin-2, interferon alfa or other melanoma vaccines.  Patients will be evaluated on this trial for 6 months and then followed yearly for 5 years

                       

                      If your mom's melanoma is considered advanced and her tumor has the BRAF mutation, she might qualify for this trial. I copied this from Johns Hopkins' web site so I don't know if other hospitals are having the same trial:

                      J10122: An Open Label, Dose Escalation, Phase I Study to Investigate the Safety, Pharmacokinetics, Pharmacodynamics and Clinical Activity of the BRAF Inhibitor GSK2118436 in Combination with the MEK Inhibitor GSK1120212 in Subjects with BRAF Mutant Metastatic Melanoma
                      The purposes of this study are: 1) to test the safety of the drugs GSK1120212 and GSK2118436 taken separately and together, and 2) to examine how well these drugs work together in mediating tumor regression in patients with locally advanced or metastatic melanoma.  Individually, both drugs have been shown in previous studies to cause the regression of advanced metastatic melanoma. Scientific evidence suggests that the combination may improve outcomes.  Eligible subjects must have measurable metastatic melanoma tumors that contain the BRAF V600E mutation. Patients will be assigned to one of three treatment groups: BRAF inhibitor only, BRAF inhibitor plus high dose MEK inhibitor, or BRAF plus low dose MEK inhibitor.  Both medications are orally administered and need to be taken every day.  Patients will be seen every two weeks for the first month and then monthly thereafter.

                      The following conditions may exclude enrollment in this study:
                      • Prior exposure to BRAF or MEK inhibitors
                      • On warfarin (Coumadin)
                      • Certain ophthalmologic (eye) problems
                      • Uncontrolled hypertension, diabetes, hyperlipidemia, coagulopathy or NYHA Class II, III, or IV heart failure
                      • HIV, Hepatitis B or Hepatitis C infection
                      • Untreated or symptomatic melanoma metastases in the central nervous system (brain, spinal cord)
                      • Pregnancy
                      • Glucose-6-phosphate-dehydrogenase deficiency (G6PD deficiency)

                      Linny
                      Participant

                        I'm sorry to hear of your mom's diagnosis.

                        Is she being seen at a melanoma center? If not, then it won't hurt for her to get a second opinion from a doctor at a melanoma center (i.e., MD Anderson, Moffitt, Johns Hopkins, Sloan Kettering, etc.). The doctors there are going to be the most up to speed on treatments and be able to give her information on clinical trials for which she may qualify.

                        I'm surprised that Yervoy was not offered as an option for your mother.

                        The only melanoma vaccines I'm aware of are available only through a clinical trial. I'm Stage III and am on one now for a vaccine but that trial is no longer accepting new patients. The side effects are very tolerable.

                        Johns Hopkins is holding a trial for a vaccine:

                        J1112: A FEASIBILITY AND TOXICITY STUDY OF A GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) ADMINISTERED ALONE OR IN COMBINATION WITH CYCLOPHOSPHAMIDE IN SUBJECTS WITH SURGICALLY RESECTED AT-RISK MELANOMA
                        This melanoma vaccine trial is a phase I study for patients with stage IIB, IIC, III or IV melanoma who have undergone complete surgical resection but who are at risk for developing recurrence of their disease.  Melanoma GVAX is an investigational vaccine designed to teach the immune system to recognize and eliminate melanoma tumors, which may persist at a microscopic level after surgery.  In this study, some patients will receive Melanoma GVAX alone (low dose or high dose), while others will receive Melanoma GVAX plus low-dose cyclophosphamide. Cyclophosphamide is a chemotherapy frequently used in cancer treatment.  In this study, it will be given at a low dose to try to augment the effects of the vaccine.  The purpose of this study is to find the optimal dose of Melanoma GVAX, with or without cyclophosphamide, that is safe and that produces an immune response.  The vaccine will be given in the skin monthly for four doses.  Eligible patients must be ≥18 years old with melanoma arising in the skin or mucous membranes (such as the nostrils, mouth, or rectum) that has been completely resected at least 2 weeks but no more than 6 months prior to receiving the first treatment on this trial.  Patients with melanomas arising in the eye (ocular) are not eligible.  Participants must not have hepatitis, HIV, or any history of an immune disorder.  Patients must not have received any type of cancer immunotherapy, such as interleukin-2, interferon alfa or other melanoma vaccines.  Patients will be evaluated on this trial for 6 months and then followed yearly for 5 years

                         

                        If your mom's melanoma is considered advanced and her tumor has the BRAF mutation, she might qualify for this trial. I copied this from Johns Hopkins' web site so I don't know if other hospitals are having the same trial:

                        J10122: An Open Label, Dose Escalation, Phase I Study to Investigate the Safety, Pharmacokinetics, Pharmacodynamics and Clinical Activity of the BRAF Inhibitor GSK2118436 in Combination with the MEK Inhibitor GSK1120212 in Subjects with BRAF Mutant Metastatic Melanoma
                        The purposes of this study are: 1) to test the safety of the drugs GSK1120212 and GSK2118436 taken separately and together, and 2) to examine how well these drugs work together in mediating tumor regression in patients with locally advanced or metastatic melanoma.  Individually, both drugs have been shown in previous studies to cause the regression of advanced metastatic melanoma. Scientific evidence suggests that the combination may improve outcomes.  Eligible subjects must have measurable metastatic melanoma tumors that contain the BRAF V600E mutation. Patients will be assigned to one of three treatment groups: BRAF inhibitor only, BRAF inhibitor plus high dose MEK inhibitor, or BRAF plus low dose MEK inhibitor.  Both medications are orally administered and need to be taken every day.  Patients will be seen every two weeks for the first month and then monthly thereafter.

                        The following conditions may exclude enrollment in this study:
                        • Prior exposure to BRAF or MEK inhibitors
                        • On warfarin (Coumadin)
                        • Certain ophthalmologic (eye) problems
                        • Uncontrolled hypertension, diabetes, hyperlipidemia, coagulopathy or NYHA Class II, III, or IV heart failure
                        • HIV, Hepatitis B or Hepatitis C infection
                        • Untreated or symptomatic melanoma metastases in the central nervous system (brain, spinal cord)
                        • Pregnancy
                        • Glucose-6-phosphate-dehydrogenase deficiency (G6PD deficiency)

                        Linny
                        Participant

                          I'm sorry to hear of your mom's diagnosis.

                          Is she being seen at a melanoma center? If not, then it won't hurt for her to get a second opinion from a doctor at a melanoma center (i.e., MD Anderson, Moffitt, Johns Hopkins, Sloan Kettering, etc.). The doctors there are going to be the most up to speed on treatments and be able to give her information on clinical trials for which she may qualify.

                          I'm surprised that Yervoy was not offered as an option for your mother.

                          The only melanoma vaccines I'm aware of are available only through a clinical trial. I'm Stage III and am on one now for a vaccine but that trial is no longer accepting new patients. The side effects are very tolerable.

                          Johns Hopkins is holding a trial for a vaccine:

                          J1112: A FEASIBILITY AND TOXICITY STUDY OF A GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) ADMINISTERED ALONE OR IN COMBINATION WITH CYCLOPHOSPHAMIDE IN SUBJECTS WITH SURGICALLY RESECTED AT-RISK MELANOMA
                          This melanoma vaccine trial is a phase I study for patients with stage IIB, IIC, III or IV melanoma who have undergone complete surgical resection but who are at risk for developing recurrence of their disease.  Melanoma GVAX is an investigational vaccine designed to teach the immune system to recognize and eliminate melanoma tumors, which may persist at a microscopic level after surgery.  In this study, some patients will receive Melanoma GVAX alone (low dose or high dose), while others will receive Melanoma GVAX plus low-dose cyclophosphamide. Cyclophosphamide is a chemotherapy frequently used in cancer treatment.  In this study, it will be given at a low dose to try to augment the effects of the vaccine.  The purpose of this study is to find the optimal dose of Melanoma GVAX, with or without cyclophosphamide, that is safe and that produces an immune response.  The vaccine will be given in the skin monthly for four doses.  Eligible patients must be ≥18 years old with melanoma arising in the skin or mucous membranes (such as the nostrils, mouth, or rectum) that has been completely resected at least 2 weeks but no more than 6 months prior to receiving the first treatment on this trial.  Patients with melanomas arising in the eye (ocular) are not eligible.  Participants must not have hepatitis, HIV, or any history of an immune disorder.  Patients must not have received any type of cancer immunotherapy, such as interleukin-2, interferon alfa or other melanoma vaccines.  Patients will be evaluated on this trial for 6 months and then followed yearly for 5 years

                           

                          If your mom's melanoma is considered advanced and her tumor has the BRAF mutation, she might qualify for this trial. I copied this from Johns Hopkins' web site so I don't know if other hospitals are having the same trial:

                          J10122: An Open Label, Dose Escalation, Phase I Study to Investigate the Safety, Pharmacokinetics, Pharmacodynamics and Clinical Activity of the BRAF Inhibitor GSK2118436 in Combination with the MEK Inhibitor GSK1120212 in Subjects with BRAF Mutant Metastatic Melanoma
                          The purposes of this study are: 1) to test the safety of the drugs GSK1120212 and GSK2118436 taken separately and together, and 2) to examine how well these drugs work together in mediating tumor regression in patients with locally advanced or metastatic melanoma.  Individually, both drugs have been shown in previous studies to cause the regression of advanced metastatic melanoma. Scientific evidence suggests that the combination may improve outcomes.  Eligible subjects must have measurable metastatic melanoma tumors that contain the BRAF V600E mutation. Patients will be assigned to one of three treatment groups: BRAF inhibitor only, BRAF inhibitor plus high dose MEK inhibitor, or BRAF plus low dose MEK inhibitor.  Both medications are orally administered and need to be taken every day.  Patients will be seen every two weeks for the first month and then monthly thereafter.

                          The following conditions may exclude enrollment in this study:
                          • Prior exposure to BRAF or MEK inhibitors
                          • On warfarin (Coumadin)
                          • Certain ophthalmologic (eye) problems
                          • Uncontrolled hypertension, diabetes, hyperlipidemia, coagulopathy or NYHA Class II, III, or IV heart failure
                          • HIV, Hepatitis B or Hepatitis C infection
                          • Untreated or symptomatic melanoma metastases in the central nervous system (brain, spinal cord)
                          • Pregnancy
                          • Glucose-6-phosphate-dehydrogenase deficiency (G6PD deficiency)

                            RobinS
                            Participant

                              Thank you very much for your response – I really appreciate all of your suggestions.

                              My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

                              Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

                              I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

                              I appreciate the time you have taken to respond.  Take care.

                              RobinS
                              Participant

                                Thank you very much for your response – I really appreciate all of your suggestions.

                                My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

                                Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

                                I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

                                I appreciate the time you have taken to respond.  Take care.

                                RobinS
                                Participant

                                  Thank you very much for your response – I really appreciate all of your suggestions.

                                  My mother is being treated at the Cleveland Clinic and she has received mixed recommendations.  An oncologist who specializes in hematology recommended Yervoy but the oncologist who specializes in melanoma said that the side effects were too dangerous at her age and indicated that 30% of patients on the trial end up in the hospital treating the side effects.

                                  Interferon he suggested but said it is a trade-off and a decision she can make.  The flu-like symptoms and fatigue will take away a year of her life with only a 10% chance for an improved outcome.  So I am looking into vaccines that might have fewer, less severe side effects so she can enjoy the next year.  

                                  I don't think she has been tested for the BRAF mutation but it is on my list to ask the oncologist next week.  I am disappointed in the Cleveland Clinic because they didn't do a tumor board for her case and she is getting different input from every doctor she has seen.  So I would like to take her to a true melanoma clinic to get a second opinion and potentially find a clinical trial that better fits her needs.

                                  I appreciate the time you have taken to respond.  Take care.

                                awillett1991
                                Participant
                                  I was originally diagnosed stage 3c and also chose not to do interferon. I have a friend who tried Yervoy for adjuvant therapy, he was surgically NED, maybe that is an option. Also be sure her tumor cells are tested for BRAF mutations so you’ll know the options there ahead of time if you need it.
                                    RobinS
                                    Participant

                                      Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

                                      Best of luck to you and your friend.  And thank you.

                                      awillett1991
                                      Participant
                                        You can read all my info on my profile, rather than me to repost it here. I have had a rough 2.5 yrs but i have 3 school age kids and still hope to live to raise them as long as I can. NED means no evidence of disease – in other words, nothing that is measurable on a scan. My friend tried yervoy but only made 2 of the 4 infusions due to colitis. He is older like your mom. He regrets it. He also now has a heart problem. Any treatment will porbably damage the body, be prepared for that.

                                        With Mel, you just have to make the best decision at the time, hope for the best, and move on. For clinical trials you will have to make phone calls to the centers to find if there are openings, be aggressive, and even then they are very specific about the kinds of patients they will accept. Good luck! Lots of great info on this site.

                                        awillett1991
                                        Participant
                                          You can read all my info on my profile, rather than me to repost it here. I have had a rough 2.5 yrs but i have 3 school age kids and still hope to live to raise them as long as I can. NED means no evidence of disease – in other words, nothing that is measurable on a scan. My friend tried yervoy but only made 2 of the 4 infusions due to colitis. He is older like your mom. He regrets it. He also now has a heart problem. Any treatment will porbably damage the body, be prepared for that.

                                          With Mel, you just have to make the best decision at the time, hope for the best, and move on. For clinical trials you will have to make phone calls to the centers to find if there are openings, be aggressive, and even then they are very specific about the kinds of patients they will accept. Good luck! Lots of great info on this site.

                                          awillett1991
                                          Participant
                                            You can read all my info on my profile, rather than me to repost it here. I have had a rough 2.5 yrs but i have 3 school age kids and still hope to live to raise them as long as I can. NED means no evidence of disease – in other words, nothing that is measurable on a scan. My friend tried yervoy but only made 2 of the 4 infusions due to colitis. He is older like your mom. He regrets it. He also now has a heart problem. Any treatment will porbably damage the body, be prepared for that.

                                            With Mel, you just have to make the best decision at the time, hope for the best, and move on. For clinical trials you will have to make phone calls to the centers to find if there are openings, be aggressive, and even then they are very specific about the kinds of patients they will accept. Good luck! Lots of great info on this site.

                                            RobinS
                                            Participant

                                              Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

                                              Best of luck to you and your friend.  And thank you.

                                              RobinS
                                              Participant

                                                Thank you for your reply.  How long ago were you diagnosed?  Did you have any adjuvent therapy?  What is NED? I will be sure my mother is tested for the BRAF mutation.  I have read about that and there are better options if she has the mutation.

                                                Best of luck to you and your friend.  And thank you.

                                              awillett1991
                                              Participant
                                                I was originally diagnosed stage 3c and also chose not to do interferon. I have a friend who tried Yervoy for adjuvant therapy, he was surgically NED, maybe that is an option. Also be sure her tumor cells are tested for BRAF mutations so you’ll know the options there ahead of time if you need it.
                                                awillett1991
                                                Participant
                                                  I was originally diagnosed stage 3c and also chose not to do interferon. I have a friend who tried Yervoy for adjuvant therapy, he was surgically NED, maybe that is an option. Also be sure her tumor cells are tested for BRAF mutations so you’ll know the options there ahead of time if you need it.
                                              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