My Mom is at what her Oncologist calls the end of possible treatment. He is not a myeloma specialist but We have gotten consults and the reality is that after an almost complete response to Revlimid, her proteins started going up in August and are now in the 4000's. Her latest biopsy shows that her bone marrow has been taken over by myeloma and her CBC demonstrates that (see below).
She has been on Velcade, Dex and Cytoxin for 3 weeks but it isn't working and has been stopped because of plunging white counts (today .4)
I have more detail below if that would help answer the question, but I am tryng to get a grip on what feels like sitting at the edge of a crumbling cliff.; Has anyone been here? What did you do? What happened? She is not ready to go and is in zero pain or discomfort beyond weakness.
She is in the hospital getting great care and including all kinds of prohphylactic anti-fungal, anti-viral, antibiotics and regular transfusions. My feeling is that if we took her to a skilled nursing facility (which the hospital is discussing) where her blood would not be monitored daily, she will quickly acquire an infection or experience a catastrophic bleed. But I also understand that she is not responding to chemo and that the transfusions are a holding action.
Her Oncologist is very pessamistic and keeps telling us we have to act to make sure she isn't taken to ICU in the face of an impending catastrophic event.
Of course no one can predict the future, but there must be likely scenarios. How close to the cliff edge is she?
DATA if this makes a difference
Today her WBC is .4
Yesterday she had a platelet transfusion and two units of blood because she had a platelet count of 7 and an HGB of 7.7
Today it's 27 and 10
So far her kidneys are unaffected, Her Creatine is holding steady at .7 but I see her BUN creeping up every day today it is 29
She has no bone pain (although at diagnosis had her femur essentially eroded and lesions all over)
We have been on this spiral for six months.
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Re: What Are the Likely scenarios after bone marrow failure
Dear Hourly2010.
My beloved husband passed away a year and half ago from multiple myeloma/plasma cell leukemia. I remember well when the doctor told us there was nothing more she could offer for treatment. She gave him one last platelet transfusion (and spent time crying with us, along with all the wonderful nurses and staff who came to say goodbye) and we arranged for hospice at home. We asked the doctor what might happen and she said he could get an infection, pneumonia or he might just fall asleep and not wake up. That is what happened. My darling husband did not suffer although he grew weaker every day. He just quietly slept more the last three days until he passed in the most peaceful and serene way possible. If there is anything such as a beautiful death, he had it. He was surrounded by so much love. When we knew further treatments would not be helfpul, my husband made clear that he did not want to be treated with antibiotics and he had a DNR and DNI order. My heart goes out to you. Cherish this time with your mother, talk to her, let her share her stories if she can still communicate with you. Try not to be afraid. If there is nothing more that can be done, I would urge you to consider hospice. They are truly angels and will help you and your mother through this. Peace and blessings to you.
My beloved husband passed away a year and half ago from multiple myeloma/plasma cell leukemia. I remember well when the doctor told us there was nothing more she could offer for treatment. She gave him one last platelet transfusion (and spent time crying with us, along with all the wonderful nurses and staff who came to say goodbye) and we arranged for hospice at home. We asked the doctor what might happen and she said he could get an infection, pneumonia or he might just fall asleep and not wake up. That is what happened. My darling husband did not suffer although he grew weaker every day. He just quietly slept more the last three days until he passed in the most peaceful and serene way possible. If there is anything such as a beautiful death, he had it. He was surrounded by so much love. When we knew further treatments would not be helfpul, my husband made clear that he did not want to be treated with antibiotics and he had a DNR and DNI order. My heart goes out to you. Cherish this time with your mother, talk to her, let her share her stories if she can still communicate with you. Try not to be afraid. If there is nothing more that can be done, I would urge you to consider hospice. They are truly angels and will help you and your mother through this. Peace and blessings to you.
-
valeriej
Re: What Are the Likely scenarios after bone marrow failure
Hello hourly2010,
I'm sorry to hear about the situation with your mother. I truly hope you and her physicians are able to find a solution.
What I will try to do here is outline some options. This may give you something to take to your mother's doctors.
I will say from the start, however, that your mother's low white counts complicate the situation. Your mother's doctors are going to have to filter the options based on the situation with her white counts.
I also should add that I'm not a physician, so there may be some errors in what I am saying.
Here are some of the options worth considering:
Thalidomide - Since your mother responded to Revlimid in the past, and since it's been a while, this may be an option worth pursuing. It's also readily available. It isn't used much in the U.S. any longer, so your mother's doctor may not even be thinking about it.
Kyprolis (carfilzomib) - This drug works similarly to Velcade, and has been shown to work in some patients who have been previously treated with both Revlimid and Velcade. It' was approved this summer by the FDA for the treatment of myeloma, so, once again, your mother's doctor may not be fully aware of it.
Melphalan (Alkeran) - Your mother already may have been treated with this if she had a stem cell transplant in the past. If not, then, once again, it's something your mother's doctors may want to consider. They may not be thinking about it because, as is the case with thalidomide, it's not used much in the U.S. except as the treatment given before stem cell transplants. But it's actually one of the most active anti-myeloma agents.
Doxorubicin (either in its standard form, which has the brand name Adriamycin, or in a special form known by the brand name Doxil) - This is often used together with Velcade. It's not used that often by itself. It also was part of a common three-drug combination in the past known by the acronym "VAD" - Vincristine-Adriamycin-dexamethasone. Again, your doctors may not be considering this because it's somewhat old fashioned, but it may be worth considering at this point. There are some very long-lived myeloma patients who have been treated with not much more than the VAD combination.
Treanda (bendamustine) - This drug is approved in certain European countries for the treatment of myeloma, but not in the U.S. It is available in the U.S., however, as a treatment for some kinds of lymphoma. In the case of myeloma, it is used more often in the U.S. for patients such as your mother who are in the later stages of disease and are not responding to other therapies. It is in the same broad class of drugs as melphalan and cyclophosphamide (Cytoxan).
Zolinza (vorinostat) - This is a drug approved in the U.S. for the treatment of a specific type of lymphoma, but it is being tested -- primarily in combination with drugs like Velcade and Kyprolis -- as a potential treatment for myeloma. It probably will not do much for your mother on its own.
pomalidomide - This drug is not yet approved by the FDA. However, it is expected to be approved in the near future as a new treatment (together with dexamethasone) for myeloma. Also, it is available to patients like your mother who have exhausted other treatment options through a program called "Pexius" ( http://www.thepexiusstudy.com/ ). Like Kyprolis, it has been shown to work in some patients who have previously been treated with Revlimid.
Your mother's doctors will know about most of the drugs I've listed above. So, if you take them this list, it may spark some ideas about options they could pursue.
Most likely, the best option is going to be a combination of two or more of the drugs I've listed above, together with either dexamethasone or prednisone.
As I said at the beginning, the big issue is how to deal with your mother's white counts. Your mother's doctors will have a much better idea than I do about how to deal with that issue.
Good luck! And please keep us posted and don't hesitate to post more questions.
- Boris.
I'm sorry to hear about the situation with your mother. I truly hope you and her physicians are able to find a solution.
What I will try to do here is outline some options. This may give you something to take to your mother's doctors.
I will say from the start, however, that your mother's low white counts complicate the situation. Your mother's doctors are going to have to filter the options based on the situation with her white counts.
I also should add that I'm not a physician, so there may be some errors in what I am saying.
Here are some of the options worth considering:
Thalidomide - Since your mother responded to Revlimid in the past, and since it's been a while, this may be an option worth pursuing. It's also readily available. It isn't used much in the U.S. any longer, so your mother's doctor may not even be thinking about it.
Kyprolis (carfilzomib) - This drug works similarly to Velcade, and has been shown to work in some patients who have been previously treated with both Revlimid and Velcade. It' was approved this summer by the FDA for the treatment of myeloma, so, once again, your mother's doctor may not be fully aware of it.
Melphalan (Alkeran) - Your mother already may have been treated with this if she had a stem cell transplant in the past. If not, then, once again, it's something your mother's doctors may want to consider. They may not be thinking about it because, as is the case with thalidomide, it's not used much in the U.S. except as the treatment given before stem cell transplants. But it's actually one of the most active anti-myeloma agents.
Doxorubicin (either in its standard form, which has the brand name Adriamycin, or in a special form known by the brand name Doxil) - This is often used together with Velcade. It's not used that often by itself. It also was part of a common three-drug combination in the past known by the acronym "VAD" - Vincristine-Adriamycin-dexamethasone. Again, your doctors may not be considering this because it's somewhat old fashioned, but it may be worth considering at this point. There are some very long-lived myeloma patients who have been treated with not much more than the VAD combination.
Treanda (bendamustine) - This drug is approved in certain European countries for the treatment of myeloma, but not in the U.S. It is available in the U.S., however, as a treatment for some kinds of lymphoma. In the case of myeloma, it is used more often in the U.S. for patients such as your mother who are in the later stages of disease and are not responding to other therapies. It is in the same broad class of drugs as melphalan and cyclophosphamide (Cytoxan).
Zolinza (vorinostat) - This is a drug approved in the U.S. for the treatment of a specific type of lymphoma, but it is being tested -- primarily in combination with drugs like Velcade and Kyprolis -- as a potential treatment for myeloma. It probably will not do much for your mother on its own.
pomalidomide - This drug is not yet approved by the FDA. However, it is expected to be approved in the near future as a new treatment (together with dexamethasone) for myeloma. Also, it is available to patients like your mother who have exhausted other treatment options through a program called "Pexius" ( http://www.thepexiusstudy.com/ ). Like Kyprolis, it has been shown to work in some patients who have previously been treated with Revlimid.
Your mother's doctors will know about most of the drugs I've listed above. So, if you take them this list, it may spark some ideas about options they could pursue.
Most likely, the best option is going to be a combination of two or more of the drugs I've listed above, together with either dexamethasone or prednisone.
As I said at the beginning, the big issue is how to deal with your mother's white counts. Your mother's doctors will have a much better idea than I do about how to deal with that issue.
Good luck! And please keep us posted and don't hesitate to post more questions.
- Boris.
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: What Are the Likely scenarios after bone marrow failure
One other thing, hourly2010,
There's also a combination regimen known as DT-PACE, or VDT-PACE, that is sometimes used for patients such as your mother.
It's actually a common upfront therapy at some institutions. But, elsewhere, it's used for patients in the later stages of myeloma. The Beacon columnist Arnie Goodman was able to get good results with it after he had stopped responding to a number of other treatments.
Once again, your mother's doctors will probably know of it and will be able to assess whether it's a good idea for her.
The combination involves some of the drugs I mentioned in my previous posting, but also include another drug -- etoposide -- that I didn't mention.
Again, all the best,
Boris.
There's also a combination regimen known as DT-PACE, or VDT-PACE, that is sometimes used for patients such as your mother.
It's actually a common upfront therapy at some institutions. But, elsewhere, it's used for patients in the later stages of myeloma. The Beacon columnist Arnie Goodman was able to get good results with it after he had stopped responding to a number of other treatments.
Once again, your mother's doctors will probably know of it and will be able to assess whether it's a good idea for her.
The combination involves some of the drugs I mentioned in my previous posting, but also include another drug -- etoposide -- that I didn't mention.
Again, all the best,
Boris.
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: What Are the Likely scenarios after bone marrow failure
Thank you for the very helpful replies.
The discussion of further chemo raises one of the big things I still don't understand--because it sounds like a circular argument.
If the only way to ever produce white blood cells is to treat the cancer with chemo, then what is the harm of continuing chemo even in the face of low white blood count.
Especially if the chemo is not otherwise lowering the quality of her life.
In what sense is further chemo "dangerous" when not treating is even more so?
The discussion of further chemo raises one of the big things I still don't understand--because it sounds like a circular argument.
If the only way to ever produce white blood cells is to treat the cancer with chemo, then what is the harm of continuing chemo even in the face of low white blood count.
Especially if the chemo is not otherwise lowering the quality of her life.
In what sense is further chemo "dangerous" when not treating is even more so?
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