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looking for hope from others plz

Forums General Melanoma Community looking for hope from others plz

  • Post
    csellers23
    Participant
      My husband 39 has cancer in his bones 3 one spine one on hip one on ribs. Also 7 in his lungs and 2 the size of grapes and 7 the size if bbs in his brain. We have done full brain radiation and the tafinlar/mek pills. The pills shrank some others stayed the same and 3 got bigger. After 4 weeks they took him off them and onto yervoy. He was put in ER for high fever 103 that wouldnt break. After being put on steroids we got his fever down. That was after his first treatment. Is there anyone out there who has been through this for along time or even became ned? We have 3 kids and one will be here next month. Anyone plz. Thank you.
    Viewing 8 reply threads
    • Replies
        eturner
        Participant

          Hi, 

          My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

          Emily

          eturner
          Participant

            Hi, 

            My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

            Emily

            eturner
            Participant

              Hi, 

              My name is Emily and my 34 year old husband has stage 4 mel in his bones and a few spots on his lung as well. We have also done the tafinlar/mek pills ( they worked for about 5 months) yesterday he did his 4th yervoy we rescan in 4 weeks. We began our battle last Sept with stage 4 and here we are still fighting… he feels good today and that's all I can ask for. I'm thinking we will start pd1 very soon. Sorry I'm not any real help as far as long term survivor, I am however ever offering my support if you need me I'm here or on FB ( Emily Ryder Turner). 

              Emily

              BrianP
              Participant

                I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

                Brian

                  csellers23
                  Participant
                    His lab work is fine. They cant find anything wrong they said its called yervoy flu syndrome we seen a specialist in vandy 3 hours away. Your right about our next treatment but my husbanf doesntwant to stop yervoy because we only have one other treatment that can cross into the brain. And yervoy works with so many people.
                    csellers23
                    Participant
                      His lab work is fine. They cant find anything wrong they said its called yervoy flu syndrome we seen a specialist in vandy 3 hours away. Your right about our next treatment but my husbanf doesntwant to stop yervoy because we only have one other treatment that can cross into the brain. And yervoy works with so many people.
                      BrianP
                      Participant

                        Crystale,

                        I agree with your husband.  If it were me I'd want to give Yervoy more time also.  I think too many people disgard Yervoy and look at it as an obstacle to anti-PD1 instead of treatment that could be their silver bullet.  I also believe some of these treatments can be cumulative and even if it doesn't seem to be helping at the time it may be priming the immune system for a follow on treatment.  I'm glad you are being seen at Vandy.  That seems like a great facility.  Are you all considering trials if Yervoy doesn't work out?  Does Vandy have any that sound good?  How far are you from Sarah Cannon in Nashville?

                        Brian

                        BrianP
                        Participant

                          Crystale,

                          I agree with your husband.  If it were me I'd want to give Yervoy more time also.  I think too many people disgard Yervoy and look at it as an obstacle to anti-PD1 instead of treatment that could be their silver bullet.  I also believe some of these treatments can be cumulative and even if it doesn't seem to be helping at the time it may be priming the immune system for a follow on treatment.  I'm glad you are being seen at Vandy.  That seems like a great facility.  Are you all considering trials if Yervoy doesn't work out?  Does Vandy have any that sound good?  How far are you from Sarah Cannon in Nashville?

                          Brian

                          BrianP
                          Participant

                            Crystale,

                            I agree with your husband.  If it were me I'd want to give Yervoy more time also.  I think too many people disgard Yervoy and look at it as an obstacle to anti-PD1 instead of treatment that could be their silver bullet.  I also believe some of these treatments can be cumulative and even if it doesn't seem to be helping at the time it may be priming the immune system for a follow on treatment.  I'm glad you are being seen at Vandy.  That seems like a great facility.  Are you all considering trials if Yervoy doesn't work out?  Does Vandy have any that sound good?  How far are you from Sarah Cannon in Nashville?

                            Brian

                            csellers23
                            Participant
                              His lab work is fine. They cant find anything wrong they said its called yervoy flu syndrome we seen a specialist in vandy 3 hours away. Your right about our next treatment but my husbanf doesntwant to stop yervoy because we only have one other treatment that can cross into the brain. And yervoy works with so many people.
                            BrianP
                            Participant

                              I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

                              Brian

                              BrianP
                              Participant

                                I'm sorry you are going through such a tough time CS.  Your husband's high fever isn't a typical reaction to Ipi but I have heard of it happening.  I hope someone will chime in with a similar experience and can offer some advice on what they did.  Ipi is really tough to judge its effectiveness due to the delayed response it often has. Are there any other abnormal readings other than the fever (liver numbers or diarhea)?  Are you guys being seen by a melanoma specialist?  Are your current doctors giving you any idea what they think the next step should be?  Probably the most obvious next step would be to switch to Anti-PD1 (Keytruda) but as you may know that requires to fail Ipi first.  I would think that having a severe reaction to Ipi may qualify as a Ipi failure so I'd be talking to my doctors about that possibility.  The other option would be a clinical trial such as TIL or a trial combining anti-PD1 with another agent.  If you are interested in that option you could provide your general location so others might be able to let you know of trials near you that may be available.  Hang in there.

                                Brian

                                Bubbles
                                Participant

                                  Oh, Crystale,

                                  I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

                                  First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

                                  The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                  Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                  And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

                                  I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste

                                  Bubbles
                                  Participant

                                    Oh, Crystale,

                                    I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

                                    First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

                                    The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                    Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                    And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

                                    I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste

                                    Bubbles
                                    Participant

                                      Oh, Crystale,

                                      I am so sorry you and your husband are having to deal with melanoma and side effects from his treatments.  We must not be far apart geographically.  I live in Chattanooga.  As I'm sure you already know, Vandy as well as Sarah Cannon, like Brian mentioned, have good services to offer melanoma patients.  I know that it is hard to believe these meds can be effective when your husband is having such a difficult time despite the treatments he has used so far…but I wanted to give you some data that might give you hope that better days can be in store.

                                      First of all, when using immunotherapy (like ipi and the anti-PD1 drugs) THEY don't have to cross the blood brain barrier, because the T-cells they put into action do!!!!  Furthermore, we are learning more and more about the receptors that are on the surface of brain tumors.  The receptors for a wide variety of checkpoint inhibitors are on brain tumors!!!  Here's what the experts say:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/more-reasons-to-treat-melanoma-brain.html

                                      The real trick is finding the drug and treatment plan that will work for your husband.  Which I realize is not so easy!  But, here's a breakdown of various sources noting how treatments CAN work in the brain:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/cytotoxic-t-cells-and-brafi-work-on.html

                                      Here's a breakdown of anti-PD1 works generally and in the brain, specifically:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                                      And here is an overview of treatment for brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/overview-of-treatments-for-melanoma.html

                                      I know this is a lot of information that may be daunting just now.  But, I wanted to show you that brain mets can be addressed.  Unfortunately, as you and your husband are sadly aware….it's still not easy.  But, there are some positive possibilities.  Hang in there.  Wishing you and your husband well.  Celeste

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