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Clinical Trials & Hospice Care

Forums General Melanoma Community Clinical Trials & Hospice Care

  • Post
    EricNJill
    Participant

      We called in Hospice to get help with Eric.  They said that they would care for him during the 2 month waiting period before Eric can get into a Clinical Trial for having Brain Mets.  He had a Craniotomy and he's having Gamma Knife on 11/29.  They have been a huge help already, but our problem is…

      We called in Hospice to get help with Eric.  They said that they would care for him during the 2 month waiting period before Eric can get into a Clinical Trial for having Brain Mets.  He had a Craniotomy and he's having Gamma Knife on 11/29.  They have been a huge help already, but our problem is…

      Eric's Oncologist said that no clinical trial will accept Eric if he has been under Hospice Care.  Hospice said they would step out and come back in when needed but the Oncologist is afraid that the clinical trials won't take him.  How would they even know?

      I'd like to keep Hospice because it's a huge help.

      JillNEric in OH

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    • Replies
        Cate
        Participant

          Hi Jill,  So sorry you are going thru this.  It was may understanding that Hospice care can be started and stopped at any time.  I don't understand how that could affect admission to a clinical trial.   The clinical trial would know because your doctor has to order hospice care in order for insurance to pay for it.  I would look carefully at the admission criteria for Eric's  clinical trial and speak with someone running the trial.   Any one else have info on this situation????    Cate

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            Brandi
            Participant

              I am not sure how hospice will affect any clinical trials in the future. I used to work in hospice though and I know that you can decline hospice care at any time no questions. Maybe the dr is saying that if the clinical trials see that he has already qualified for hospice they may not accept him based on they may think he is too far advanced in his disease but honestly I am not sure. Your doctor can order pain meds for him also that you can give at home. Hospice can teach you how to use these meds and then step out maybe that is an option.

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              Brandi
              Participant

                I am not sure how hospice will affect any clinical trials in the future. I used to work in hospice though and I know that you can decline hospice care at any time no questions. Maybe the dr is saying that if the clinical trials see that he has already qualified for hospice they may not accept him based on they may think he is too far advanced in his disease but honestly I am not sure. Your doctor can order pain meds for him also that you can give at home. Hospice can teach you how to use these meds and then step out maybe that is an option.

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              Cate
              Participant

                Hi Jill,  So sorry you are going thru this.  It was may understanding that Hospice care can be started and stopped at any time.  I don't understand how that could affect admission to a clinical trial.   The clinical trial would know because your doctor has to order hospice care in order for insurance to pay for it.  I would look carefully at the admission criteria for Eric's  clinical trial and speak with someone running the trial.   Any one else have info on this situation????    Cate

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                Linda/Kentucky
                Participant

                  Jill

                  I really don't know what to suggest to you.  Sometimes you have to live in the moment and take it "one day at a time"  If hospice is doing Eric some good this is probably what he needs for the time being.  I really don't understand why the onc. said he couldn't get into a clinical trial if he is under hospice care???  I am getting ready to give hospice a call too.  John has stage IV and we were suppose to go to Onc. today for a consult for possible tx. for his GNAQ mutation.  I'm not sure what tx if any but we were told about a month ago chemo was the only choice until we got these results.  We had to cx. todays appt. due to John not being able to even get out of bed since yesterday and pain meds just barely taking the edge off it.  He had a pretty good week last week and he may have overdone it???  I agree with you how would they know? Anyway good luck with whatever you decide such tough choices with this stupid disease.  I do hope Eric gets to feeling better and finds a tx that will work for him.  Sounds like we are in the same boat.  Not a good place to vacate!

                   

                  P.S.  What all is hospice willing to do for  if you don't mind my asking?

                   

                  Linda/Kentucky

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                    EricNJill
                    Participant

                      Linda,  As soon as they stepped in she took a look at Eric's mouth and gasp because he has Thrush really bad.  It is everywhere in his mouth and I had no idea.  We've had home healthcare for weeks now and no one has even looked into his mouth.  She immediately got him Diflucan ordered and delivered on a Sunday!   Eric has all kinds of problems with his vascular tumors on his leg seeping and bleeding and it's a constant battle to keep them bandaged and dry with what i have available to me.  I've been asking home health nurses and they can't get me any bandages because our insurance won't cover it.  So just the bandages alone are going to save me a lot of money and aggravation dealing with his tumors.

                      Last night I went to go to bed and our bed was soaking wet!  I'm not kidding you it looked like someone threw a bucket of water on Eric.  He had no fever but was sweating horribly.  I immediately called the hospice number and she was more than happy to come over and check him but she felt it was tumor necrosis, which happens in this stage.  It's just so nice to have people that know what's going on.

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                      EricNJill
                      Participant

                        Linda,  As soon as they stepped in she took a look at Eric's mouth and gasp because he has Thrush really bad.  It is everywhere in his mouth and I had no idea.  We've had home healthcare for weeks now and no one has even looked into his mouth.  She immediately got him Diflucan ordered and delivered on a Sunday!   Eric has all kinds of problems with his vascular tumors on his leg seeping and bleeding and it's a constant battle to keep them bandaged and dry with what i have available to me.  I've been asking home health nurses and they can't get me any bandages because our insurance won't cover it.  So just the bandages alone are going to save me a lot of money and aggravation dealing with his tumors.

                        Last night I went to go to bed and our bed was soaking wet!  I'm not kidding you it looked like someone threw a bucket of water on Eric.  He had no fever but was sweating horribly.  I immediately called the hospice number and she was more than happy to come over and check him but she felt it was tumor necrosis, which happens in this stage.  It's just so nice to have people that know what's going on.

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                      Linda/Kentucky
                      Participant

                        Jill

                        I really don't know what to suggest to you.  Sometimes you have to live in the moment and take it "one day at a time"  If hospice is doing Eric some good this is probably what he needs for the time being.  I really don't understand why the onc. said he couldn't get into a clinical trial if he is under hospice care???  I am getting ready to give hospice a call too.  John has stage IV and we were suppose to go to Onc. today for a consult for possible tx. for his GNAQ mutation.  I'm not sure what tx if any but we were told about a month ago chemo was the only choice until we got these results.  We had to cx. todays appt. due to John not being able to even get out of bed since yesterday and pain meds just barely taking the edge off it.  He had a pretty good week last week and he may have overdone it???  I agree with you how would they know? Anyway good luck with whatever you decide such tough choices with this stupid disease.  I do hope Eric gets to feeling better and finds a tx that will work for him.  Sounds like we are in the same boat.  Not a good place to vacate!

                         

                        P.S.  What all is hospice willing to do for  if you don't mind my asking?

                         

                        Linda/Kentucky

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                        Lori C
                        Participant

                          I was told that in Illinois, hospice was going to be allowed to give services to people still receiving active treatment soon.  That is not currently the case.  To qualify for hospice in Illinois, you have to have a prognosis of < six months and only receive palliative care. 

                          I know that you can certainly withdraw from hospice and resume standard treatments but am unfamiliar with the clinical trial situation.  Most of the clinical trials I looked at for Will had a requirement of > 3 months life expectancy but said nothing about hospice.  I would call someone at clinical trials.gov to clarify.

                          Thinking of you both.

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                          Lori C
                          Participant

                            I was told that in Illinois, hospice was going to be allowed to give services to people still receiving active treatment soon.  That is not currently the case.  To qualify for hospice in Illinois, you have to have a prognosis of < six months and only receive palliative care. 

                            I know that you can certainly withdraw from hospice and resume standard treatments but am unfamiliar with the clinical trial situation.  Most of the clinical trials I looked at for Will had a requirement of > 3 months life expectancy but said nothing about hospice.  I would call someone at clinical trials.gov to clarify.

                            Thinking of you both.

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                            I am so sorry that this is being presented to you as a comfort vs. treatment option!

                            My understanding when I was caring for my father was that I could dismiss hospice at any time if I decided he was well enough for treatment.  I can't imagine your physician's perspective is correct.  The implication would be that people might refuse palliative care with the hope that they will eventually qualify for treatment.  That would lead to so much unnecessary suffering!

                            My thoughts are with you.  Perhaps discuss with the social worker affiliated with the hospice people.  Their job is to solve these kinds of problems.

                            Best wishes to you both,

                            ellen

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                            I am so sorry that this is being presented to you as a comfort vs. treatment option!

                            My understanding when I was caring for my father was that I could dismiss hospice at any time if I decided he was well enough for treatment.  I can't imagine your physician's perspective is correct.  The implication would be that people might refuse palliative care with the hope that they will eventually qualify for treatment.  That would lead to so much unnecessary suffering!

                            My thoughts are with you.  Perhaps discuss with the social worker affiliated with the hospice people.  Their job is to solve these kinds of problems.

                            Best wishes to you both,

                            ellen

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                            bcl
                            Participant

                              Hello Jill,  this might be a long shot, but can you have hospice say they are giving palliative care just in case it makes a difference?   http://www.getpalliativecare.org/whatis/faq  ( this link describes the differences between hospice and palliative care and you can also search it  to find a hospital in Ohio that provides palliative services.)

                              I have a friend with end stage lung cancer who is adamant he will not go into hospice (and therefore stop treatment). Just last week he agreed to palliative care because it supports his family, addresses his pain and importantly, allows him to continue fighting. (And yes, we hounded him a bit; but he looks and feels so much better this week. He also managed another treatment when it looked like he would not be able to.)  I had a look at the clinical trials web site and in some trials they mention something called best supportive care, and not as an exclusion.  I could be entirely wrong,  but it might be worth looking into. Thinking of you and Eric, linda

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                              bcl
                              Participant

                                Hello Jill,  this might be a long shot, but can you have hospice say they are giving palliative care just in case it makes a difference?   http://www.getpalliativecare.org/whatis/faq  ( this link describes the differences between hospice and palliative care and you can also search it  to find a hospital in Ohio that provides palliative services.)

                                I have a friend with end stage lung cancer who is adamant he will not go into hospice (and therefore stop treatment). Just last week he agreed to palliative care because it supports his family, addresses his pain and importantly, allows him to continue fighting. (And yes, we hounded him a bit; but he looks and feels so much better this week. He also managed another treatment when it looked like he would not be able to.)  I had a look at the clinical trials web site and in some trials they mention something called best supportive care, and not as an exclusion.  I could be entirely wrong,  but it might be worth looking into. Thinking of you and Eric, linda

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                                  EricNJill
                                  Participant

                                    Thank you!  That is exactly what we are using Hospice for.  He still wants to try and get into the BRAF study so we are just using it for comfort for him until he does. 

                                    Thank you all so much for your help.  JillNEric In OH

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                                    EricNJill
                                    Participant

                                      Thank you!  That is exactly what we are using Hospice for.  He still wants to try and get into the BRAF study so we are just using it for comfort for him until he does. 

                                      Thank you all so much for your help.  JillNEric In OH

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                                    JuleFL
                                    Participant

                                      Hi Jill,  I'm sorry that you are having to make this choice.  Hospice is a wonderful service.  The only thing I know about clinical trials and hospice is that a trial will exclude someone who does not meet certain "performance" standards.  This is one reason why my husband was taken off the ipi trial and not allowed on any other trial.  In the trial description, look for "Eastern Cooperative Oncology Group (ECOG) Performance Status  "" "    

                                      This measurement is based on an individual's ability to work, do daily tasks, mobililty.  When one is in hospice, it could be assumed that he is unable to care for himself.  If this is the case, then the ECOG performance level is a higher number (ie, a "2" or "3").  This could be what Eric's doctor is thinking about.

                                      We chose hospice because of the amount of care they provide and we had hoped that Cal might be able to improve his physical condition and eventually be eligible for the BRAF trial (he was positive).  In our case, unfortunately, Cal fell and broke his arm resulting in loss of mobility and the eventual decline in his health.

                                      I know that it is so frustrating because Eric was close to getting into the trial.  His current state of health needs to be addressed and hospice is best prepared to do that.  He can go in and out of hospice, but he probably needs to fulfill the "performance status" to get in the trial.  Google ECOG Performance Status for more info about it.

                                      I will continue to send prayers your way. 

                                      Jule

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                                      JuleFL
                                      Participant

                                        Hi Jill,  I'm sorry that you are having to make this choice.  Hospice is a wonderful service.  The only thing I know about clinical trials and hospice is that a trial will exclude someone who does not meet certain "performance" standards.  This is one reason why my husband was taken off the ipi trial and not allowed on any other trial.  In the trial description, look for "Eastern Cooperative Oncology Group (ECOG) Performance Status  "" "    

                                        This measurement is based on an individual's ability to work, do daily tasks, mobililty.  When one is in hospice, it could be assumed that he is unable to care for himself.  If this is the case, then the ECOG performance level is a higher number (ie, a "2" or "3").  This could be what Eric's doctor is thinking about.

                                        We chose hospice because of the amount of care they provide and we had hoped that Cal might be able to improve his physical condition and eventually be eligible for the BRAF trial (he was positive).  In our case, unfortunately, Cal fell and broke his arm resulting in loss of mobility and the eventual decline in his health.

                                        I know that it is so frustrating because Eric was close to getting into the trial.  His current state of health needs to be addressed and hospice is best prepared to do that.  He can go in and out of hospice, but he probably needs to fulfill the "performance status" to get in the trial.  Google ECOG Performance Status for more info about it.

                                        I will continue to send prayers your way. 

                                        Jule

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                                        Jocelyn
                                        Participant

                                          Jill I wonder if your onc really knows this, or just assumes it. My brother was in hospice for 3 months, which included all the weeks of his ipi trial. I believe he started hospice a little before the trial, although he was already slated for the trial. When he went for his first treatment, they did ask questions and conducted tests concerning performance, and apparently found him functional enough to qualify despite hospice. But he was quite weak at the time, and he went to subsequent treatments in a wheel chair.  Hospice never left until his condition began to miraculously improve; by then the trial was over. I just wonder if this ruling is carved in stone, or if it is done on a case by case basis, as are many things. Then again, it could vary by state, as someone pointed out.

                                          Good luck to you. I hope Eric can do the trial.

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                                          Jocelyn
                                          Participant

                                            Jill I wonder if your onc really knows this, or just assumes it. My brother was in hospice for 3 months, which included all the weeks of his ipi trial. I believe he started hospice a little before the trial, although he was already slated for the trial. When he went for his first treatment, they did ask questions and conducted tests concerning performance, and apparently found him functional enough to qualify despite hospice. But he was quite weak at the time, and he went to subsequent treatments in a wheel chair.  Hospice never left until his condition began to miraculously improve; by then the trial was over. I just wonder if this ruling is carved in stone, or if it is done on a case by case basis, as are many things. Then again, it could vary by state, as someone pointed out.

                                            Good luck to you. I hope Eric can do the trial.

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                                            killmel
                                            Participant

                                              Jill,

                                               

                                              Will Eric still have ILP??? Or wait for Braf trial?

                                               

                                              God Bless you both

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                                              killmel
                                              Participant

                                                Jill,

                                                 

                                                Will Eric still have ILP??? Or wait for Braf trial?

                                                 

                                                God Bless you both

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                                                molly
                                                Participant

                                                  Jill…continuing to keep Eric and all of your family in prayers. This situation with hospice and trials seems so unfair and just plain wrong…hopefully, you will find a solution for that. Those going through these trials should be our heroes and treated as such. Happy Thanksgiving and know that the doctors treating Eric will be in my prayers on Monday.

                                                  molly

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                                                  molly
                                                  Participant

                                                    Jill…continuing to keep Eric and all of your family in prayers. This situation with hospice and trials seems so unfair and just plain wrong…hopefully, you will find a solution for that. Those going through these trials should be our heroes and treated as such. Happy Thanksgiving and know that the doctors treating Eric will be in my prayers on Monday.

                                                    molly

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                                                    Sherron
                                                    Participant

                                                      Jill,

                                                       

                                                      My Jim will start Hospice soon also…I cannot believe it has come to this, and the  4 years have passed so quickly.

                                                       

                                                      I have been at the hosital non=stop….the kids made me come home to sleep for a while.  He is stable right now.

                                                       

                                                      Wishing you and Eric    the best.  Melanoma is such a beast and robs our lives much too early.  But, lets be thankful they are with us today.

                                                      Take Care,

                                                      Sherron, wife to JIm

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                                                      Sherron
                                                      Participant

                                                        Jill,

                                                         

                                                        My Jim will start Hospice soon also…I cannot believe it has come to this, and the  4 years have passed so quickly.

                                                         

                                                        I have been at the hosital non=stop….the kids made me come home to sleep for a while.  He is stable right now.

                                                         

                                                        Wishing you and Eric    the best.  Melanoma is such a beast and robs our lives much too early.  But, lets be thankful they are with us today.

                                                        Take Care,

                                                        Sherron, wife to JIm

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                                                        NicOz
                                                        Participant

                                                          One thing I learned quickly working in trials, is that doctors are often ignorant about many things relating to criteria (and the protocols in general) I would honestly guess that the Onc's comments stemmed from exclusion criteria relating to the Karnovsy score of the patient (included in most trials)- however I personally have never seen a trial that excluded based on previous Karnovsky score- it only related to current status. In the case of Eric, if hospice was no longer needed and he improved in areas relating to that score, I can't see how his previous need for hospice would be relevant?

                                                          The other thing I am hesitant to mention is the "life expectancy" which can often be part of the trial inclusion/exclusion criteria. It could be the Onc is using his 'current' prognosis to base his comments on, but using hospice as a way to circumvent mentioning that directly. Having said that, the expectancy is based on the time of recruitment for the clinical trial as well- not on past predictions.

                                                          If you are finding hospice helpful, then continue to use it.

                                                          (FWIW, I've always found Onc's to be the most negative medico's I've dealt with. Mine had me dead and buried well over a year ago.)

                                                          Perhaps, if the Onc has a trial nurse/coordinator, you could talk with them- if they are unsure they speak directly to the company to clarify things like this.

                                                          You are doing a fantastic job, and I'm thinking of Eric and hoping hospice is assisting him and things start to improve for him rapidly! Best of luck to you both :)

                                                          Nic

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                                                          NicOz
                                                          Participant

                                                            One thing I learned quickly working in trials, is that doctors are often ignorant about many things relating to criteria (and the protocols in general) I would honestly guess that the Onc's comments stemmed from exclusion criteria relating to the Karnovsy score of the patient (included in most trials)- however I personally have never seen a trial that excluded based on previous Karnovsky score- it only related to current status. In the case of Eric, if hospice was no longer needed and he improved in areas relating to that score, I can't see how his previous need for hospice would be relevant?

                                                            The other thing I am hesitant to mention is the "life expectancy" which can often be part of the trial inclusion/exclusion criteria. It could be the Onc is using his 'current' prognosis to base his comments on, but using hospice as a way to circumvent mentioning that directly. Having said that, the expectancy is based on the time of recruitment for the clinical trial as well- not on past predictions.

                                                            If you are finding hospice helpful, then continue to use it.

                                                            (FWIW, I've always found Onc's to be the most negative medico's I've dealt with. Mine had me dead and buried well over a year ago.)

                                                            Perhaps, if the Onc has a trial nurse/coordinator, you could talk with them- if they are unsure they speak directly to the company to clarify things like this.

                                                            You are doing a fantastic job, and I'm thinking of Eric and hoping hospice is assisting him and things start to improve for him rapidly! Best of luck to you both :)

                                                            Nic

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                                                            W.
                                                            Participant

                                                              I wonder whether the expanded access trial for PLX4032 could be an option for you. It might have less strict criteria for inclusion. But I don't know any details (I think it is not possible to find out on the web at the moment).

                                                              The first three locations have opened/are opening at Nashville, Detroit and Los Angeles, according to the forum at melanomaintl.org.

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                                                                EricNJill
                                                                Participant

                                                                  I didn't realize there was expanded access to PLX4032, I'll have to look into that. 

                                                                  I decided to keep Hospice on, it's a huge help and I couldn't find anything that said he couldn't get into a trial if he was in Hospice for pallitive care. 

                                                                  Eric's Oncologist would not prescribe him the Temodar unless we met with the ILP Surgeon an HOUR away to see our options.  I had to take off 3 hours from work and drag my exhausted, sick husband to an appointment for something we knew was not even an option for us but if we didn't go he wouldn't prescribe him the Temodar so we went.  It was a complete was of time because the surgeon agreed that Eric's leg had too much disease to be considered for ILP. 

                                                                  Eric is scheduled to do the Gamma Knife on Monday and I am waiting for the Temodar.  It was called in to a delivery Pharmacy so we probably won't get it until Monday. 

                                                                  Thank you all for your replies.  I honestly don't know what I would have done without so many of your help.  You keep me sane and that's not easy!!

                                                                  JillNEric In OH

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                                                                  LynnLuc
                                                                  Participant

                                                                    Met a man at Moffitt who underwent the gamma knife the day before and he had no ill effects the day after…at most a slight headache. Didn't you all use Moffitt before…perhaps it is the eastern cooperative rules…just call Moffitt and talk to your old trial nurse…she should know how it works…we may all need to jump around the country  to get what we need

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                                                                    LynnLuc
                                                                    Participant

                                                                      Met a man at Moffitt who underwent the gamma knife the day before and he had no ill effects the day after…at most a slight headache. Didn't you all use Moffitt before…perhaps it is the eastern cooperative rules…just call Moffitt and talk to your old trial nurse…she should know how it works…we may all need to jump around the country  to get what we need

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                                                                      EricNJill
                                                                      Participant

                                                                        I didn't realize there was expanded access to PLX4032, I'll have to look into that. 

                                                                        I decided to keep Hospice on, it's a huge help and I couldn't find anything that said he couldn't get into a trial if he was in Hospice for pallitive care. 

                                                                        Eric's Oncologist would not prescribe him the Temodar unless we met with the ILP Surgeon an HOUR away to see our options.  I had to take off 3 hours from work and drag my exhausted, sick husband to an appointment for something we knew was not even an option for us but if we didn't go he wouldn't prescribe him the Temodar so we went.  It was a complete was of time because the surgeon agreed that Eric's leg had too much disease to be considered for ILP. 

                                                                        Eric is scheduled to do the Gamma Knife on Monday and I am waiting for the Temodar.  It was called in to a delivery Pharmacy so we probably won't get it until Monday. 

                                                                        Thank you all for your replies.  I honestly don't know what I would have done without so many of your help.  You keep me sane and that's not easy!!

                                                                        JillNEric In OH

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                                                                      W.
                                                                      Participant

                                                                        I wonder whether the expanded access trial for PLX4032 could be an option for you. It might have less strict criteria for inclusion. But I don't know any details (I think it is not possible to find out on the web at the moment).

                                                                        The first three locations have opened/are opening at Nashville, Detroit and Los Angeles, according to the forum at melanomaintl.org.

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