Hi All,
I was wondering if anyone out there can help me with some advice for my Mum.
Mum was diagnosed with stage 3 multiple myeloma in April 2015 at age 68. She already had advanced loss of kidney function and 80% plasma cell infiltration of her bone marrow.
She commenced peritoneal dialysis in January 2017.
She is now refractory to all available treatments in Australia. She responded for a short time (until late Feb 2018) to carfilzomib (Kyprolis), then was non-responsive to daratumumab (Darzalex).
Mum is now in the pre-active stage of dying. Her hemoglobin is only 5, platelets are 5, eGFR of 4, serum corrected calcium 1.9, lambda free light chains at last count 4 weeks ago of 22,500 mg/L. Mum has opted for no further blood or platelet transfusions.
Mum would like to stop dialysis and has only continued for fear of thinking that we (her ever-loving family) might think she was selfish. We absolutely do not see her as selfish and 100% support her in her choices.
As I explained to Mum, she has no control over what multiple myeloma has done to her body, to her life, to her mind, but there is one last thing she does have control over, and that is when she chooses to stop dialysis. She has the right to choose, and she is ready and at peace with that. Naturally we (myself, my brother, and my Dad) don't want her to leave us, but we didn't want her to have multiple myeloma in the first place, as I'm sure everyone here can understand. Mum should not have to suffer or lose her dignity.
What she does want to know, and as her daughter I cannot answer, is how long it will take for her to pass once she stops dialysis. I make a rough, somewhat educated guess at 3 - 5 days, but I was wondering if anyone out there has some information that's likely to be more accurate?
Any thoughts or opinions are greatly appreciated.
Regards
Tracey
Forums
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TraceyChops - Name: Tracey
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
Hello Tracey.
I'm very sorry to hear about the situation your mother is in at this time.
I reached out to one of the Myeloma Beacon's Medical Advisors to see if they might have feedback for you related to your question. They felt strongly that this is such a sensitive matter, and one that also depends on the specifics of your mother's situation, that it really should be addressed by your mother's physician.
As you probably already have established through research of your own, most information on this topic reports that people who need dialysis, but stop it, live anywhere from a few days to several weeks. The average amount of time apparently is ten days for people who have been on dialysis for at least six months.
In case it might still be relevant to you and your family, I just want to mention that there may be a possibility your mother could get access to a potentially helpful treatment via a clinical trial. The site https://clinicaltrials.gov lists clinical trials being conducted in many different countries, including Australia. Here, for example, is a link to clinical trials in Australia that are currently recruiting myeloma patients. Many of the trials in the list are for relapsed patients such as your mother.
Good luck, and don't hesitate to update us on how things are going.
I'm very sorry to hear about the situation your mother is in at this time.
I reached out to one of the Myeloma Beacon's Medical Advisors to see if they might have feedback for you related to your question. They felt strongly that this is such a sensitive matter, and one that also depends on the specifics of your mother's situation, that it really should be addressed by your mother's physician.
As you probably already have established through research of your own, most information on this topic reports that people who need dialysis, but stop it, live anywhere from a few days to several weeks. The average amount of time apparently is ten days for people who have been on dialysis for at least six months.
In case it might still be relevant to you and your family, I just want to mention that there may be a possibility your mother could get access to a potentially helpful treatment via a clinical trial. The site https://clinicaltrials.gov lists clinical trials being conducted in many different countries, including Australia. Here, for example, is a link to clinical trials in Australia that are currently recruiting myeloma patients. Many of the trials in the list are for relapsed patients such as your mother.
Good luck, and don't hesitate to update us on how things are going.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: How long does one have after stopping dialysis?
Thank you, Boris, for seeking advice on our behalf and for your kind and gentle reply.
Mum's haematologist inquired about many of the trials you have mentioned (and thank you for including them, I really do appreciate it). Unfortunately, due to her advanced kidney failure, she was ineligible.
Mum has told us today that she is ceasing dialysis. Her final treatment was almost 24 hours ago.
I am unsure if it's appropriate for me to give regular updates going forward, as the last thing I would want to do is to upset or disillusion anyone here.
Thank you so much for being here for everyone affected by multiple myeloma. I haven't posted before yesterday, but I have read a lot on here.
Thank you all.
Mum's haematologist inquired about many of the trials you have mentioned (and thank you for including them, I really do appreciate it). Unfortunately, due to her advanced kidney failure, she was ineligible.
Mum has told us today that she is ceasing dialysis. Her final treatment was almost 24 hours ago.
I am unsure if it's appropriate for me to give regular updates going forward, as the last thing I would want to do is to upset or disillusion anyone here.
Thank you so much for being here for everyone affected by multiple myeloma. I haven't posted before yesterday, but I have read a lot on here.
Thank you all.
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TraceyChops - Name: Tracey
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
Thinking about you and your Mom. Please do not hesitate to update and post. It is entirely appropriate in this forum. Your experiences, good or bad, are always helpful to share.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
Tracey Chops,
It is alright to post here about your mother's illness. Multiple myeloma is not a nice disease and I have lost many friends to it already, over the years. The support you are giving to her as a family will help her immeasurably now, even though it is very difficult for you. As a mother and grandmother myself, that is what I would hope for if I were to be in a similar situation.
Sending prayers your way!
It is alright to post here about your mother's illness. Multiple myeloma is not a nice disease and I have lost many friends to it already, over the years. The support you are giving to her as a family will help her immeasurably now, even though it is very difficult for you. As a mother and grandmother myself, that is what I would hope for if I were to be in a similar situation.
Sending prayers your way!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long does one have after stopping dialysis?
Thank you, Laurie and Nancy, for your thoughts and support.
It's now been 3 days since Mum has ceased dialysis. Yesterday she was only awake for about 2.5 hours. She is extremely weak and somewhat confused at times when she is awake.
She is still managing to eat small amounts of soft food for breakfast, lunch and dinner, however I suspect she is only eating out of habit and possibly for our benefit. She's not hungry.
Mum is very short of breath and is now looking jaundiced.
The palliative care doctor and nurse have started coming to her at home daily and will be coming back tomorrow to place a subcutaneous administration site and teach us how to administer pain and anxiety medications.
Mum has always been a strong and independent woman and has fought so hard over the last 3 years. It's heartbreaking to see her reduced to a shell of who she once was.
I just hope I can remain as strong a woman as she is and continues to be.
It's now been 3 days since Mum has ceased dialysis. Yesterday she was only awake for about 2.5 hours. She is extremely weak and somewhat confused at times when she is awake.
She is still managing to eat small amounts of soft food for breakfast, lunch and dinner, however I suspect she is only eating out of habit and possibly for our benefit. She's not hungry.
Mum is very short of breath and is now looking jaundiced.
The palliative care doctor and nurse have started coming to her at home daily and will be coming back tomorrow to place a subcutaneous administration site and teach us how to administer pain and anxiety medications.
Mum has always been a strong and independent woman and has fought so hard over the last 3 years. It's heartbreaking to see her reduced to a shell of who she once was.
I just hope I can remain as strong a woman as she is and continues to be.
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TraceyChops - Name: Tracey
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
My beautiful Mother passed away at home in the early hours of Sunday morning with Dad and myself holding her hands. It was 6 days and 3 hours after completion of her final dialysis.
I am just about to leave for her celebration of life.
Rest Peacefully my Beautiful Mother
I am just about to leave for her celebration of life.
Rest Peacefully my Beautiful Mother
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TraceyChops - Name: Tracey
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
I am really sorry for your loss, Tracey. I hope that all your fond memories of the time you spent together help to sustain you at this time.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How long does one have after stopping dialysis?
I'm sorry for your loss and thank you for letting us know. Peace.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: How long does one have after stopping dialysis?
Hi Tracey,
Thank you for overcoming your pain long enough to tell us about your mother.
Many, if not most of us with multiple myeloma, face a day when the cancer or the complications or the treatment gets us at last. It is an important subject and one that everyone is hesitant to talk about.
Personally, I don't want a heroic effort made to extend my life a few days or weeks. I'm not afraid of moving to the next life, I'm just afraid of prolonged suffering. And I believe hospice care will take care of the worst of it.
In some ways, knowing what is likely to get us at least puts a "face" on our demise. Everyone dies, but relatively few know what will be the cause, or how far down the road that may be.
And having some foreknowledge, as you and your family had, gives everyone time to prepare and to say the things we all want said at such a time. In that respect, your were blessed.
Thank you once again for your generosity.
Thank you for overcoming your pain long enough to tell us about your mother.
Many, if not most of us with multiple myeloma, face a day when the cancer or the complications or the treatment gets us at last. It is an important subject and one that everyone is hesitant to talk about.
Personally, I don't want a heroic effort made to extend my life a few days or weeks. I'm not afraid of moving to the next life, I'm just afraid of prolonged suffering. And I believe hospice care will take care of the worst of it.
In some ways, knowing what is likely to get us at least puts a "face" on our demise. Everyone dies, but relatively few know what will be the cause, or how far down the road that may be.
And having some foreknowledge, as you and your family had, gives everyone time to prepare and to say the things we all want said at such a time. In that respect, your were blessed.
Thank you once again for your generosity.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
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