MRF-Logo2019-Horizontal-RGB
update on Brent need HELP
REGISTER
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.

update on Brent need HELP

› Forums › General Melanoma Community › update on Brent need HELP

  • Post
    • March 3, 2013 at 1:43 pm
    sharmon
    Participant

      Hi,  a lot has happened in the last month.  First he failed the anti pd 1 trial.  The happened end of January.  Pain was uncontrollable due to crushed vertebra and bone mets. Surgery, pain pump followed by radiation is behind him.  Last week we flew to MD Anderson. This is where it gets confusing.  Brent is C-Kit negative. but  they want him to try a trial which is ippi and gleevec.  His original melanoma was under his toenail.

      Hi,  a lot has happened in the last month.  First he failed the anti pd 1 trial.  The happened end of January.  Pain was uncontrollable due to crushed vertebra and bone mets. Surgery, pain pump followed by radiation is behind him.  Last week we flew to MD Anderson. This is where it gets confusing.  Brent is C-Kit negative. but  they want him to try a trial which is ippi and gleevec.  His original melanoma was under his toenail.

      I questioned the fact that he was a Mek responder and Braf negative. I was told he was on a few of the people who were braf negative and a responder to MEk.  DR. agreed that is a good point but insurance will not pay for braf drug.  Mek is downstream from Braf. 

      Brents done very well on radiation.  He was able to fly to Houston and back without much trouble.  His blood work is good considering he has had two weeks of radiation recently.

      Dr. Weber doesn't want to see him anymore since he failed the anti pd 1 trial.  Says there is nothing at moffit for him.

      Do I need a new local oncoligist to help me?

      We have been to Karmanos in Michagan ,  Sarah Cannon in Nashville. and OHIO state.  Should I call them?

      Md Anderson will put him on the IPPi Trial with Gleevac but WHY if he not C kit?

      I don't write as well as some and am trying to make my point quickly.  IT is I need input and help in this maze.  I am so confused. 

    Viewing 17 reply threads
    • Replies
        • March 3, 2013 at 3:12 pm
        NYKaren
        Participant
          Sharmon, I’m so sorry you two are going through this.
          How long ago was Brent’s BRAF testing done? I and a few others that were tested 2-3 years ago were false negatives. Just a thought.
          giant hug,
          Karen
          • March 3, 2013 at 3:12 pm
          NYKaren
          Participant
            Sharmon, I’m so sorry you two are going through this.
            How long ago was Brent’s BRAF testing done? I and a few others that were tested 2-3 years ago were false negatives. Just a thought.
            giant hug,
            Karen
            • March 3, 2013 at 3:12 pm
            NYKaren
            Participant
              Sharmon, I’m so sorry you two are going through this.
              How long ago was Brent’s BRAF testing done? I and a few others that were tested 2-3 years ago were false negatives. Just a thought.
              giant hug,
              Karen
              • March 3, 2013 at 3:14 pm
              POW
              Participant

                Sharom, I don't quite understand what you are asking. From what you describe, it sounds like there are no further appropriate treatments for Brent. This ipi/gleevac combo would be a real "Hail Mary" pass  but it is Brent's ONLY option if he wants to continue treatment. Is that correct? So what is your question?

                  • March 3, 2013 at 6:28 pm
                  sharmon
                  Participant

                    Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                    • March 3, 2013 at 6:28 pm
                    sharmon
                    Participant

                      Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                      • March 3, 2013 at 6:28 pm
                      sharmon
                      Participant

                        Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                        • March 3, 2013 at 6:35 pm
                        sharmon
                        Participant

                          Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                          • March 3, 2013 at 6:57 pm
                          jmmm
                          Participant
                            Ippi is FDA approved…any oncologist can prescribe it, but the side effects can be scary, so it’s important to have someone who knows what to do (or know what to do and tell the oncologist). My husband did it with a general oncologist and did great. Has he had ippi yet? If it worked the first time, maybe it would work again? I’ve heard several people have success with ippi + high dose radiation….something about the combination makes the ippi work better. Hopefully you can find seeming that will slow the beast down!
                            • March 3, 2013 at 6:57 pm
                            jmmm
                            Participant
                              Ippi is FDA approved…any oncologist can prescribe it, but the side effects can be scary, so it’s important to have someone who knows what to do (or know what to do and tell the oncologist). My husband did it with a general oncologist and did great. Has he had ippi yet? If it worked the first time, maybe it would work again? I’ve heard several people have success with ippi + high dose radiation….something about the combination makes the ippi work better. Hopefully you can find seeming that will slow the beast down!
                              • March 3, 2013 at 6:57 pm
                              jmmm
                              Participant
                                Ippi is FDA approved…any oncologist can prescribe it, but the side effects can be scary, so it’s important to have someone who knows what to do (or know what to do and tell the oncologist). My husband did it with a general oncologist and did great. Has he had ippi yet? If it worked the first time, maybe it would work again? I’ve heard several people have success with ippi + high dose radiation….something about the combination makes the ippi work better. Hopefully you can find seeming that will slow the beast down!
                                • March 3, 2013 at 6:35 pm
                                sharmon
                                Participant

                                  Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                                  • March 3, 2013 at 6:35 pm
                                  sharmon
                                  Participant

                                    Thanks for you reply,  Dr Weber had said once before that there was no more treatment at Moffitt for Brent and then we went to Md Anderson and started Mek,  He got 3 and a half years on that trial.  He doesn't want to give up and now I need to find the next trial.  We don't have a local oncologist to fight for him,.  Should he have one outside of Phase I trials to be his advocate.  Can he get ippi alone from a local oncologist?

                                  • March 3, 2013 at 3:14 pm
                                  POW
                                  Participant

                                    Sharom, I don't quite understand what you are asking. From what you describe, it sounds like there are no further appropriate treatments for Brent. This ipi/gleevac combo would be a real "Hail Mary" pass  but it is Brent's ONLY option if he wants to continue treatment. Is that correct? So what is your question?

                                    • March 3, 2013 at 3:14 pm
                                    POW
                                    Participant

                                      Sharom, I don't quite understand what you are asking. From what you describe, it sounds like there are no further appropriate treatments for Brent. This ipi/gleevac combo would be a real "Hail Mary" pass  but it is Brent's ONLY option if he wants to continue treatment. Is that correct? So what is your question?

                                      • March 3, 2013 at 7:19 pm
                                      Janner
                                      Participant

                                        Dr. Weber has no trials for him, but what does he say about Yervoy (Ipi)?  That is FDA approved and doesn't need to be administered in a trial.  Radiation is also an approved therapy.  So while there may be a trial combining the two, they can be done outside a trial.  I would think you should be able to find someone to administer Yervoy close to home.  Whether that is with Dr. Weber or somewhere else, you could decide.  But anything that is FDA approved can be administered by any competent oncologist.  Yervoy can have serious side effects so finding a doctor who does this routinely is the best choice.

                                        Best wishes,

                                        Janner

                                        • March 3, 2013 at 7:19 pm
                                        Janner
                                        Participant

                                          Dr. Weber has no trials for him, but what does he say about Yervoy (Ipi)?  That is FDA approved and doesn't need to be administered in a trial.  Radiation is also an approved therapy.  So while there may be a trial combining the two, they can be done outside a trial.  I would think you should be able to find someone to administer Yervoy close to home.  Whether that is with Dr. Weber or somewhere else, you could decide.  But anything that is FDA approved can be administered by any competent oncologist.  Yervoy can have serious side effects so finding a doctor who does this routinely is the best choice.

                                          Best wishes,

                                          Janner

                                          • March 3, 2013 at 7:19 pm
                                          Janner
                                          Participant

                                            Dr. Weber has no trials for him, but what does he say about Yervoy (Ipi)?  That is FDA approved and doesn't need to be administered in a trial.  Radiation is also an approved therapy.  So while there may be a trial combining the two, they can be done outside a trial.  I would think you should be able to find someone to administer Yervoy close to home.  Whether that is with Dr. Weber or somewhere else, you could decide.  But anything that is FDA approved can be administered by any competent oncologist.  Yervoy can have serious side effects so finding a doctor who does this routinely is the best choice.

                                            Best wishes,

                                            Janner

                                            • March 3, 2013 at 10:09 pm
                                            JerryfromFauq
                                            Participant

                                              There are several things here that I am not clear on.

                                              Does Dr Weber mean that there are no more trials at Moffit for Brent or does he refuse to do the Yervoy? and if so why?  Moffet should be experienced with Yervoy.

                                              As far as the Ippi and Gleevec, it would be one way to get the Yervoy.  Gleevec, for me has had only small negative side effects after adapting to the edema by taking the pee pills to reduce the fluid retention.  One MUST take a full glass of liquid and eat food when taking the Gleevec.   Do you know what the dosing amounts and schedule would be for each of the Ipi and gleevec?

                                                    If there is no c-kit oncoproteins involved I don't understand why the Gleevec should be beneficial, but also cannot see why it should be a negative if also receiving the Ipi.

                                                 I just found your Email last night.  Sorry I didn't get back to you sooner.

                                              • March 3, 2013 at 10:09 pm
                                              JerryfromFauq
                                              Participant

                                                There are several things here that I am not clear on.

                                                Does Dr Weber mean that there are no more trials at Moffit for Brent or does he refuse to do the Yervoy? and if so why?  Moffet should be experienced with Yervoy.

                                                As far as the Ippi and Gleevec, it would be one way to get the Yervoy.  Gleevec, for me has had only small negative side effects after adapting to the edema by taking the pee pills to reduce the fluid retention.  One MUST take a full glass of liquid and eat food when taking the Gleevec.   Do you know what the dosing amounts and schedule would be for each of the Ipi and gleevec?

                                                      If there is no c-kit oncoproteins involved I don't understand why the Gleevec should be beneficial, but also cannot see why it should be a negative if also receiving the Ipi.

                                                   I just found your Email last night.  Sorry I didn't get back to you sooner.

                                                • March 3, 2013 at 10:09 pm
                                                JerryfromFauq
                                                Participant

                                                  There are several things here that I am not clear on.

                                                  Does Dr Weber mean that there are no more trials at Moffit for Brent or does he refuse to do the Yervoy? and if so why?  Moffet should be experienced with Yervoy.

                                                  As far as the Ippi and Gleevec, it would be one way to get the Yervoy.  Gleevec, for me has had only small negative side effects after adapting to the edema by taking the pee pills to reduce the fluid retention.  One MUST take a full glass of liquid and eat food when taking the Gleevec.   Do you know what the dosing amounts and schedule would be for each of the Ipi and gleevec?

                                                        If there is no c-kit oncoproteins involved I don't understand why the Gleevec should be beneficial, but also cannot see why it should be a negative if also receiving the Ipi.

                                                     I just found your Email last night.  Sorry I didn't get back to you sooner.

                                                  • March 4, 2013 at 2:45 am
                                                  awillett1991
                                                  Participant
                                                    Shamon,

                                                    I’ve heard thru the grape vine that Sarah Cannon only has three open trials for melanoma right now, their website is current for the moment. The phase I antibody drug conjugate trial (DEDN6526A ) is very low accrual (50) and I heard they have only 3 slots opening soon. This is a phase I drug though and a fancy kind of chemo really. Who knows if it works.

                                                    Amy

                                                    • March 4, 2013 at 2:45 am
                                                    awillett1991
                                                    Participant
                                                      Shamon,

                                                      I’ve heard thru the grape vine that Sarah Cannon only has three open trials for melanoma right now, their website is current for the moment. The phase I antibody drug conjugate trial (DEDN6526A ) is very low accrual (50) and I heard they have only 3 slots opening soon. This is a phase I drug though and a fancy kind of chemo really. Who knows if it works.

                                                      Amy

                                                      • March 4, 2013 at 2:45 am
                                                      awillett1991
                                                      Participant
                                                        Shamon,

                                                        I’ve heard thru the grape vine that Sarah Cannon only has three open trials for melanoma right now, their website is current for the moment. The phase I antibody drug conjugate trial (DEDN6526A ) is very low accrual (50) and I heard they have only 3 slots opening soon. This is a phase I drug though and a fancy kind of chemo really. Who knows if it works.

                                                        Amy

                                                        • March 9, 2013 at 4:04 am
                                                        Gene_S
                                                        Participant

                                                          Hi, Here are my suggestions… Have lunch between 11am and 1 pm outside when the temperature is warm enough to ware minimal clothes. Stay outside in the sun until his skin barely starts turning pink!  Bye no means do you want a SUNBURN!  See the following video for some more info, especially pay attention to the info at the 13 minute marker. Do not take a shower/bath until the next day and don't use any soap to wash off the must needed vitamin d.

                                                          .http://www.youtube.com/watch?v=eeXtGHSt-5o

                                                          Good drinking water is a must, spring water is good as it contains minerals. A lot of cancer patients die from dehydration, so drink as much good water as possible.

                                                          Best wishes,

                                                          Gene

                                                          • March 9, 2013 at 4:04 am
                                                          Gene_S
                                                          Participant

                                                            Hi, Here are my suggestions… Have lunch between 11am and 1 pm outside when the temperature is warm enough to ware minimal clothes. Stay outside in the sun until his skin barely starts turning pink!  Bye no means do you want a SUNBURN!  See the following video for some more info, especially pay attention to the info at the 13 minute marker. Do not take a shower/bath until the next day and don't use any soap to wash off the must needed vitamin d.

                                                            .http://www.youtube.com/watch?v=eeXtGHSt-5o

                                                            Good drinking water is a must, spring water is good as it contains minerals. A lot of cancer patients die from dehydration, so drink as much good water as possible.

                                                            Best wishes,

                                                            Gene

                                                            • March 9, 2013 at 4:04 am
                                                            Gene_S
                                                            Participant

                                                              Hi, Here are my suggestions… Have lunch between 11am and 1 pm outside when the temperature is warm enough to ware minimal clothes. Stay outside in the sun until his skin barely starts turning pink!  Bye no means do you want a SUNBURN!  See the following video for some more info, especially pay attention to the info at the 13 minute marker. Do not take a shower/bath until the next day and don't use any soap to wash off the must needed vitamin d.

                                                              .http://www.youtube.com/watch?v=eeXtGHSt-5o

                                                              Good drinking water is a must, spring water is good as it contains minerals. A lot of cancer patients die from dehydration, so drink as much good water as possible.

                                                              Best wishes,

                                                              Gene

                                                          Viewing 17 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