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lrkg1234

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      lrkg1234
      Participant

        Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

        He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

        He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

        This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

        He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

        It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

        I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

        God Bless, Lisa

        lrkg1234
        Participant

          Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

          He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

          He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

          This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

          He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

          It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

          I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

          God Bless, Lisa

          lrkg1234
          Participant

            Thanks everyone. Scott has given it his best with IL2, IPI, Temodar, WBR, 2 rounds of SRS and a Dasatinib trial. We have been to MD Anderson, Dana Farber, Johns Hopkins, IU health and Vanderbilt.  All very smart people, only so many options.

            He is so tired now and his body is just a mine field of tumors that are popping up through the skin. Too many mets to count on the inside, liver, lung… you name it. He has 13 brain tumors total.  It's really reached a point where it seems like the best thing to do is focus on enjoying what life is left. 

            He is a huge fighter and it was hard to hear that there is nothing else to do.  I'm sure he is more depressed than he shows me. 

            This disease really sucks.  I've never seen or heard of anything like it.    I will miss him unbelievably when he goes, but I will be so happy to know that he is free of this body and the pain that he has endured so long.  My time will be hard.  But he will be done with this mess and feeling complete.

            He is still very much with it and alert, great sense of humor, smart.  Totally mobile. He has some good days and is having nice times enjoying family, watching movies, hanging out with the dog & cat. He's not gone yet.  I think if he's relaxed, happy and pain free he might even be around longer than he would if he's submitted to more torture. 

            It's been a great help here with all the advice and education.  I would not have known what to do without the support. 

            I wish everyone the best in the fight. Big advances these days.  Getting melanoma this year is much better than getting it last year.  Every advance leads to more time. 

            God Bless, Lisa

            lrkg1234
            Participant

              Unfortunately I have seen a lot of tumors.  My husband has some tumors as you described that are under the skin and flesh toned.  Some are very sore and uncomfortable, some are not.  They are all melanoma.  Some start out as bumps then they grow larger, turn black and ulcerate.  They are horrible smelling and unattractive, yet the worst looking ones seem to cause less pain than the type that are simply under the skin.  I would get expert advice and not feel safe being told that if it doesn't hurt it's probably OK.  Be safe.

              lrkg1234
              Participant

                Unfortunately I have seen a lot of tumors.  My husband has some tumors as you described that are under the skin and flesh toned.  Some are very sore and uncomfortable, some are not.  They are all melanoma.  Some start out as bumps then they grow larger, turn black and ulcerate.  They are horrible smelling and unattractive, yet the worst looking ones seem to cause less pain than the type that are simply under the skin.  I would get expert advice and not feel safe being told that if it doesn't hurt it's probably OK.  Be safe.

                lrkg1234
                Participant

                  Unfortunately I have seen a lot of tumors.  My husband has some tumors as you described that are under the skin and flesh toned.  Some are very sore and uncomfortable, some are not.  They are all melanoma.  Some start out as bumps then they grow larger, turn black and ulcerate.  They are horrible smelling and unattractive, yet the worst looking ones seem to cause less pain than the type that are simply under the skin.  I would get expert advice and not feel safe being told that if it doesn't hurt it's probably OK.  Be safe.

                  lrkg1234
                  Participant

                    Hi Tina,

                    Bad news. 

                    Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

                    They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

                    I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

                    Please keep me posted. 

                    Lisa

                    lrkg1234
                    Participant

                      Hi Tina,

                      Bad news. 

                      Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

                      They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

                      I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

                      Please keep me posted. 

                      Lisa

                      lrkg1234
                      Participant

                        Hi Tina,

                        Bad news. 

                        Scott had 6 new brain mets and was unable to go to Vanderbilt for the trial.  They can't do anything else with the brain mets since he's had SRS twice and WBR once.  He has already had Temodar with the IPI.  No more options.

                        They suggested he call hospice and just focus on quality of life and pain management.  He took it as well as one can.  We have not done anything yet.  We are sort of in hibernation.

                        I will be thinking about you and hope that your scan is clean on the 17th.   This trial is a great opportunity. 

                        Please keep me posted. 

                        Lisa

                        lrkg1234
                        Participant

                          Hi Janet,

                          About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

                          Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

                          I would absolutely feel comfortable doing what Dana Farber suggests.

                          My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

                          He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

                          Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

                          Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

                          It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

                          I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

                          Hopefully the IPI kick in.  There is always hope since it can take a while. 

                          Will be thinking of you. 

                          In thoughts and prayers,

                          Lisa

                          lrkg1234
                          Participant

                            Hi Janet,

                            About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

                            Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

                            I would absolutely feel comfortable doing what Dana Farber suggests.

                            My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

                            He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

                            Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

                            Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

                            It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

                            I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

                            Hopefully the IPI kick in.  There is always hope since it can take a while. 

                            Will be thinking of you. 

                            In thoughts and prayers,

                            Lisa

                            lrkg1234
                            Participant

                              Hi Janet,

                              About the posting issues that you are having…  I cannot post with Internet Explorer but can through Firefox.  Might want to give that a try.

                              Sorry to hear what you are going through.  Sort of the same thing around here.  Details below.

                              I would absolutely feel comfortable doing what Dana Farber suggests.

                              My husband, Scott just finished IPI with Temador and WBR at the same time. It has not worked.  He has so many mets that I don't even want to know about each and every one of them.  They are all over his back, neck, chest, lower leg and more.  His stomach is full of them and he struggles with nausea even with zofran. Anti-Pd1 is the only hope.

                              He has had 3 rounds of brain mets within a year.  First 2 mets November/SRS, then about 3 in January/WBR and now 6/SRS completed in mid to late May.  All REALLY small mets.  He has had his brain zapped a lot and is still with it mentally.

                              Waiting to see if the last batch is gone since the SRS.  MRI is Monday the 8th.  If it worked then we will start testing at Vanderbilt for the Anti PD-1 Merck, on the 11th, randomized.  It's all a gamble.

                              Dana Farber is one of the best places of care and I would trust what they say. You have to give it a try, you can't do anymore than that.

                              It's scary when it gets to this point.  You only have so many things that you can try and no one knows.  I don't think the WBR is a bad idea.  Of course you are in risky territory, but it can end OK. Scott has hung in there and is fully functional with a full deck mentally. 

                              I'd get a plan for where you want to try to get into the Anti-PD1 if you can't get in at Dana Farber. Try to make tentative appointments based on when he gets the final MRI after the brain is treated.  If the brain MRI turns out bad then you can cancel.  Time is getting to be a big issue so you have to plan ahead as much as possible. 

                              Hopefully the IPI kick in.  There is always hope since it can take a while. 

                              Will be thinking of you. 

                              In thoughts and prayers,

                              Lisa

                              lrkg1234
                              Participant

                                Thank ANON and POW-

                                That information makes me feel a lot better.  I think we have a plan now.  The STD claim is in.  We will see what happens.  He had a little time off that he took during IL-2 treatment, and an emergency hospital stay related to IPI side effects so that will be part of the 12 weeks, but he does not have FMLA.

                                I am hoping that the LTD will just roll over and feel much better about the protection that you mentioned in already being on STD.  The only bad part was that I just read about a 180 day elimination period with the LTD with UNUM. If that's what I think it is then it means you have to be disabled or either out of work for 180 days before they pay anything so there could be a gap.  His actual diagnosis day was in August 2012, but he just stopped working last Friday, so not sure. 

                                I have the SSDI application and am ready to do that in the next few days.  He has mucosal melanoma stage IV and it DID look like it was on the compassionate list for SSDI.  I hope it's true and he can get approved quickly.  I have no idea about the onset date/diagnosis date VS the date he actually stopped working. 

                                Do you know what happens if by miracle you get approved for SSDI while you are on STD?  Is that OK?

                                We got real and accepted that he is just not going back to his job, even though we are not going to say that.  He was given 6 months to live and if he doesn't get into an anti-PD1 trial soon then he may only have a couple months.  Things are going downhill quickly. 

                                I have freaked out about as much as I can and need to rest by brain no matter what happens.  Thanks so much for your help. 

                                This is the best info that I have gotten so far and really appreciate it. 

                                lrkg1234
                                Participant

                                  Thank ANON and POW-

                                  That information makes me feel a lot better.  I think we have a plan now.  The STD claim is in.  We will see what happens.  He had a little time off that he took during IL-2 treatment, and an emergency hospital stay related to IPI side effects so that will be part of the 12 weeks, but he does not have FMLA.

                                  I am hoping that the LTD will just roll over and feel much better about the protection that you mentioned in already being on STD.  The only bad part was that I just read about a 180 day elimination period with the LTD with UNUM. If that's what I think it is then it means you have to be disabled or either out of work for 180 days before they pay anything so there could be a gap.  His actual diagnosis day was in August 2012, but he just stopped working last Friday, so not sure. 

                                  I have the SSDI application and am ready to do that in the next few days.  He has mucosal melanoma stage IV and it DID look like it was on the compassionate list for SSDI.  I hope it's true and he can get approved quickly.  I have no idea about the onset date/diagnosis date VS the date he actually stopped working. 

                                  Do you know what happens if by miracle you get approved for SSDI while you are on STD?  Is that OK?

                                  We got real and accepted that he is just not going back to his job, even though we are not going to say that.  He was given 6 months to live and if he doesn't get into an anti-PD1 trial soon then he may only have a couple months.  Things are going downhill quickly. 

                                  I have freaked out about as much as I can and need to rest by brain no matter what happens.  Thanks so much for your help. 

                                  This is the best info that I have gotten so far and really appreciate it. 

                                  lrkg1234
                                  Participant

                                    Thank ANON and POW-

                                    That information makes me feel a lot better.  I think we have a plan now.  The STD claim is in.  We will see what happens.  He had a little time off that he took during IL-2 treatment, and an emergency hospital stay related to IPI side effects so that will be part of the 12 weeks, but he does not have FMLA.

                                    I am hoping that the LTD will just roll over and feel much better about the protection that you mentioned in already being on STD.  The only bad part was that I just read about a 180 day elimination period with the LTD with UNUM. If that's what I think it is then it means you have to be disabled or either out of work for 180 days before they pay anything so there could be a gap.  His actual diagnosis day was in August 2012, but he just stopped working last Friday, so not sure. 

                                    I have the SSDI application and am ready to do that in the next few days.  He has mucosal melanoma stage IV and it DID look like it was on the compassionate list for SSDI.  I hope it's true and he can get approved quickly.  I have no idea about the onset date/diagnosis date VS the date he actually stopped working. 

                                    Do you know what happens if by miracle you get approved for SSDI while you are on STD?  Is that OK?

                                    We got real and accepted that he is just not going back to his job, even though we are not going to say that.  He was given 6 months to live and if he doesn't get into an anti-PD1 trial soon then he may only have a couple months.  Things are going downhill quickly. 

                                    I have freaked out about as much as I can and need to rest by brain no matter what happens.  Thanks so much for your help. 

                                    This is the best info that I have gotten so far and really appreciate it. 

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