Tib - It's such a mix of medicine and non medicine when it comes to end of life. I applaud you and Dan for participating in the measles trial. Keeping you and yours and all the trial participants and families in thought and prayer.
Perhaps this article by Atul Gawande (author of Being Mortal) on what medical decisions may facilitate the patient's concerns and desires given end of life is likely within sight would be of use to you two.
Arnie Goodman's widow also wrote a summary about Arnie's last days. I believe that is published on the Beacon.
Hugs, Anne
Forums
Re: Phase 2 of Mayo measles trial - informal initial results
Dear Anne-
We are very familiar with the writings of Atul Gawande. My wish is that the kind of questions he and others are raising become part of the general conversation. We are receiving excellent hospice support, and have had frank discussions with both our oncologist and hospice team about the likely sequence of events to come. After almost six months without chemotherapy or anti-myeloma drugs, Dan is in most ways feeling better than he has since diagnosis five years ago. Pain and nausea are well under control, and his biggest issues are extreme fatigue and poor failing eyesight.
To be eligible for the measles trial, patients needed to have been failed by all standard lines of treatment. Dan had already had had those, plus a few unique cocktails. The remaining options were trials using mostly drugs or drug types he had already had. We know that, if we had asked for more treatment, we would have received it, probably without discussion of the odds of success, or even a discussion of how 'success' was being defined. We might have traded the five months (and counting) of improved quality of life for effectively the same amount of time spent sick with side effects.
Multiple myeloma (and other hematological malignancies) are often treated very aggressively right up until the last weeks of a patient's life. The average time in hospice for multiple myeloma patients is very brief. Perhaps because we can track tiny improvements or changes in multiple myeloma more easily than with solid tumors, the big picture – the general trajectory – of the patient's disease, is lost. Perhaps hematology attracts a particularly tenacious personality type compared to other oncology fields. Perhaps 'success' means different things to a doctor than a patient.
I believe that quality of life in general should be part of the greater conversation in our community. QOL and symptom management (palliative care) could be addressed from day one. After three years of less-than-stellar symptom control, we requested a palliative care consult after learning that it is NOT hospice care. (A quick search for 'palliative care' on the Beacon home page mostly brings up columns that discuss it only in the context of terminal disease. There may be other articles, but a terrified patient might not be in the mood to search more carefully.)
Whether patients choose to go full throttle until the end or shift into a lower gear is a personal decision, but they should be offered the basic information needed to make their choices.
We are very familiar with the writings of Atul Gawande. My wish is that the kind of questions he and others are raising become part of the general conversation. We are receiving excellent hospice support, and have had frank discussions with both our oncologist and hospice team about the likely sequence of events to come. After almost six months without chemotherapy or anti-myeloma drugs, Dan is in most ways feeling better than he has since diagnosis five years ago. Pain and nausea are well under control, and his biggest issues are extreme fatigue and poor failing eyesight.
To be eligible for the measles trial, patients needed to have been failed by all standard lines of treatment. Dan had already had had those, plus a few unique cocktails. The remaining options were trials using mostly drugs or drug types he had already had. We know that, if we had asked for more treatment, we would have received it, probably without discussion of the odds of success, or even a discussion of how 'success' was being defined. We might have traded the five months (and counting) of improved quality of life for effectively the same amount of time spent sick with side effects.
Multiple myeloma (and other hematological malignancies) are often treated very aggressively right up until the last weeks of a patient's life. The average time in hospice for multiple myeloma patients is very brief. Perhaps because we can track tiny improvements or changes in multiple myeloma more easily than with solid tumors, the big picture – the general trajectory – of the patient's disease, is lost. Perhaps hematology attracts a particularly tenacious personality type compared to other oncology fields. Perhaps 'success' means different things to a doctor than a patient.
I believe that quality of life in general should be part of the greater conversation in our community. QOL and symptom management (palliative care) could be addressed from day one. After three years of less-than-stellar symptom control, we requested a palliative care consult after learning that it is NOT hospice care. (A quick search for 'palliative care' on the Beacon home page mostly brings up columns that discuss it only in the context of terminal disease. There may be other articles, but a terrified patient might not be in the mood to search more carefully.)
Whether patients choose to go full throttle until the end or shift into a lower gear is a personal decision, but they should be offered the basic information needed to make their choices.
-
Tib Shaw
Re: Phase 2 of Mayo measles trial - informal initial results
Hi Tib,
Thanks so much for your posts. They are very informative. In my opinion, it is extremely beneficial for all of us to get a caregivers perspective. We have Tabitha's columns for a perspective of a newly diagnosed smoldering patient's caregiver, and your contributions for a late stage patient.
I usually like to post my favorite parts of someone else's post, but I could not pick just one, so I would just recommend everyone read it again.
Thanks for your thoughtful contributions on a difficult subject.
Mark
Thanks so much for your posts. They are very informative. In my opinion, it is extremely beneficial for all of us to get a caregivers perspective. We have Tabitha's columns for a perspective of a newly diagnosed smoldering patient's caregiver, and your contributions for a late stage patient.
I usually like to post my favorite parts of someone else's post, but I could not pick just one, so I would just recommend everyone read it again.
Thanks for your thoughtful contributions on a difficult subject.
Mark
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Mark11
Re: Phase 2 of Mayo measles trial - informal initial results
Hi Tib,
I second what Mark said - thanks a lot for taking the time to give us your perspective here, which I expect was not an easy thing to do.
I'm very sorry that Dan did not have a better response in the measles trial.
Best wishes to you and Dan. We'll be thinking about both of you.
Mike
I second what Mark said - thanks a lot for taking the time to give us your perspective here, which I expect was not an easy thing to do.
I'm very sorry that Dan did not have a better response in the measles trial.
Best wishes to you and Dan. We'll be thinking about both of you.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Phase 2 of Mayo measles trial - informal initial results
I received only the measles infusion.
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Stacy Erholtz
Re: Phase 2 of Mayo measles trial - informal initial results
Thank you for the clarification, Stacy. I hope you are continuing to do well.
To clarify things for others, Stacy was responding to a question JimNY asked earlier in this thread, when he wrote:
To clarify things for others, Stacy was responding to a question JimNY asked earlier in this thread, when he wrote:
I was just reading the [Mayo measles] clinical trial description in more detail. I notice that, in the first phase of the study, patients received either the virotherapy alone, or the virotherapy combined with cyclophosphamide. In the second phase, on the other hand, patients were supposed to be given just the virotherapy.
Does anyone know if Stacy received just the virotherapy, or the virotherapy combined with cyclophosphamide?
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
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