Clinical Trials & Hospice Care

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

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

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

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

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.

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.

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

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

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

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

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

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

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.

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.

Jill,

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

God Bless you both

Jill,

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

God Bless you both

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

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

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

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

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

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

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.

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.