Hello. I just found this forum searching online and reading about multiple myeloma.
I live in Canada and I am a 39 year old woman caring for my 72 year old mom who was recently (December 6, 2014) diagnosed. We had initially called 911 back in December when I found my mom lying on the floor in her bedroom. She was coherent but unable to sit up or walk. After getting admitted, she ended up getting pneumonia and had a mild heart attack. She was in isolation for a week until she recovered from her pneumonia and then was under cardiac care for another week until she was eventually diagnosed with multiple myeloma.
After 3 weeks in hospital, she was discharged on Christmas eve (which I think was premature) and sent home. She lasted 1 week at home until 911 was called again because of a fall. She suffered a pelvic fracture and was treated at hospital before being transferred to a geriatric rehabilitation centre, where she stayed for 2 weeks.
It seems as though rehab had worked wonders for her. She hadn't been able to walk much, if at all, since her initial fall, and after rehab, she was walking with a walker and able to care for herself. She continued to have homecare after her discharge (daily PSW's, physiotherapy, OT's, nurses to treat her bed sores), and everything seemed ok. I could go back to work without worry.
However, 10 days after being home, she had a nasty fall (again). She absolutely refused to go back to the hospital and only wanted to be treated at home. That was 2 weeks ago. She's now bed bound, incontinent, and to the point where I have to hand feed her. Yesterday, the Occupational Therapist ordered her a hospital bed for home and has called in a palliative team to care for her.
I should mention that my mother has had 2 rounds of radiation in her pelvic area, 2 rounds of steroid treatments, a bone marrow biopsy, and is refusing any chemotherapy. Her oncologist has tried, as her family has, to encourage her to at least TRY, but she has refused and is in too much pain to travel weekly for chemo / blood test appointments.
I guess what I'd like to know, but haven't had the courage to ask (until now) is: What should I expect now? I mean, what will her "end" look like?
I'm not naive and know she's fading fast. I will definitely ask her palliative doctor once I meet him/her, but I thought I could get some insight here first.
Thanks for letting me share my story.
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Re: Caring for my mother (who is refusing chemotherapy)
Hi Luwebby,
I am so sorry to hear about this situation. You may find some insights into the end-of-life process in this link:
"What do people with multiple myeloma die from?", forum disc. started June 22, 2014.
I am so sorry to hear about this situation. You may find some insights into the end-of-life process in this link:
"What do people with multiple myeloma die from?", forum disc. started June 22, 2014.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Caring for my mother (who is refusing chemotherapy)
Hi, so sorry for what you are going thru – I'm sure its very difficult.
Could I ask why palliative care vs. hospice? Maybe it's to do with your medical system being different than in the U.S.?
In any case, I'm sure the link Multibilly gave you will be helpful. I just wanted to add that, with palliative or hospice care, I would think that heavy pain medication, and round the clock care, would be the mainstays of what you'll be needing.
If the doctors were to treat your mother with a form of therapy that comes in a pill, would your mom consider that? I know Revlimid and maybe a few others come in pill form.
Just a thought for you, since most relief with myeloma comes from treatment.
Best wishes to you.
Could I ask why palliative care vs. hospice? Maybe it's to do with your medical system being different than in the U.S.?
In any case, I'm sure the link Multibilly gave you will be helpful. I just wanted to add that, with palliative or hospice care, I would think that heavy pain medication, and round the clock care, would be the mainstays of what you'll be needing.
If the doctors were to treat your mother with a form of therapy that comes in a pill, would your mom consider that? I know Revlimid and maybe a few others come in pill form.
Just a thought for you, since most relief with myeloma comes from treatment.
Best wishes to you.
Re: Caring for my mother (who is refusing chemotherapy)
Hello Luwebby,
I'm sorry to hear about your mother's situation.
Multibilly and cindylouise have given you some helpful pointers. I would just reinforce what cindylouise said, which is that treatment for myeloma does not have to be like the sort of chemo that your mother probably associates with typical cancer treatment. There are options for treating the disease which do not have to have the sort of side effects that people typically think of when they think of cancer treatment. That is why many myeloma treatments are called "targeted" therapies. They are not "kill every fast growing cell in sight" treatments like the chemotherapies used with many cancers.
What is happening to your mother right now is not due to her treatment. It is due to her myeloma not being under control. You should be able to find a physician who will agree to initially treat your mother's myeloma effectively, but without severe side effects. Ideally, this would be a myeloma specialist, but I suspect that an experienced hematologist-oncologist also could come up with a treatment plan that would not have many side effects, but would get your mother's disease under control so she would feel much better. At that point, her doctors could start treating the disease more aggressively to really get the myeloma under control so she could have a number of years of quality life.
Please explain to your mother that she has nothing to lose by taking this approach. It shouldn't make her suffer any more than she is already suffering. In fact, it should relieve the suffering. The worse that can happen is that it won't work, which is no worse than what is already happening.
We all respect your mother's right to choose what treatment she wants and doesn't want. But her decision should be an informed decision, and, right now, she may be making her decision based on misinformation.
Best of luck to you and to your mother.
I'm sorry to hear about your mother's situation.
Multibilly and cindylouise have given you some helpful pointers. I would just reinforce what cindylouise said, which is that treatment for myeloma does not have to be like the sort of chemo that your mother probably associates with typical cancer treatment. There are options for treating the disease which do not have to have the sort of side effects that people typically think of when they think of cancer treatment. That is why many myeloma treatments are called "targeted" therapies. They are not "kill every fast growing cell in sight" treatments like the chemotherapies used with many cancers.
What is happening to your mother right now is not due to her treatment. It is due to her myeloma not being under control. You should be able to find a physician who will agree to initially treat your mother's myeloma effectively, but without severe side effects. Ideally, this would be a myeloma specialist, but I suspect that an experienced hematologist-oncologist also could come up with a treatment plan that would not have many side effects, but would get your mother's disease under control so she would feel much better. At that point, her doctors could start treating the disease more aggressively to really get the myeloma under control so she could have a number of years of quality life.
Please explain to your mother that she has nothing to lose by taking this approach. It shouldn't make her suffer any more than she is already suffering. In fact, it should relieve the suffering. The worse that can happen is that it won't work, which is no worse than what is already happening.
We all respect your mother's right to choose what treatment she wants and doesn't want. But her decision should be an informed decision, and, right now, she may be making her decision based on misinformation.
Best of luck to you and to your mother.
Re: Caring for my mother (who is refusing chemotherapy)
As I read CindyLouise's and Cheryl's comments, I am reminded of some relevant comments that Dr. Libby of the University of Washington and Fred Hutchinson Cancer Research Center made in an earlier forum posting about treatments for the elderly. I think it's really worth the effort to try and educate your mom a bit more on just what her options are, and I wish I had mentioned this in my original post:
Hello from gray Seattle ...
I am sorry to hear that your mother was diagnosed with myeloma. However there is hope.
The treatments for this disease have improved dramatically over the past 40 years and even elderly patients are benefiting. Many elderly patients are understandably reluctant to undergo chemotherapy regimens reminiscent of those available 20 + years ago. Fortunately, things have improved in recent decades and, for the great majority of patients with myeloma, treatment is available that is tolerable and efficacious.
In addition, the most commonly used therapies are not really chemotherapy. The new agents I am referring to would include Revlimid (a pill) and Velcade (an injection). Both of these are drugs that can have remarkable efficacy in myeloma with little to no side effects. There are also other drugs that help to prevent common complications of myeloma, such as bone fractures. Bone fractures are common in this disease and can cause very severe chronic pain. This will decrease a patient's quality of life dramatically. The drugs Aredia or Zometa are routinely used to decrease the risk of bony fractures by half in myeloma patients.
I strongly encourage you to become educated about the disease to help your mother to understand what is available and what is right for her (or not) in terms of treatment. The Myeloma Beacon is an excellent place to gain knowledge. In addition you should browse the "Links" section of the Myeloma Beacon to explore other excellent myeloma-related organizations.
Perhaps your mother would consider one of the non-chemotherapy drugs like Revlimid (a pill). In 2014, it would be a shame for someone to suffer through this difficult disease when efficacious and well tolerated treatment is available.
I have found that it is not unusual for patients to initially consider refusing treatment, but with education and understanding find acceptable treatment for their disease."
- E Libby, "Re: Mother, 83, just diagnosed - what to expect," Beacon forum posting on Jan 1, 2014.
Last edited by Multibilly on Sun Feb 15, 2015 9:12 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Caring for my mother (who is refusing chemotherapy)
Hello Luweby,
I am also sorry to hear about all of the problems that your mother is experiencing. I agree with the other people posting here. The type of chemo that your mother would receive might really help with the myeloma, and have her feeling much better too. She has already undertaken some treatments, such as radiation, so this would be more to help her cope with the multiple myeloma.
I have a quick question. If she is in such pain and distress, could she not be admitted to a hospital for care? I am not sure if she can get Revlimid, an oral pill, for initial therapy in Canada. It might be Velcade, which is by infusion or subcutaneous injection. Do you know what the treatment protocol would be?
I know that, where I live in Alberta, there are mobile vans that would come by to get blood work done. That is for patients who cannot get to a lab.
As far as I understand, 'palliative' care is to relieve symptoms of pain, and is not the same as 'hospice' care, which is more the 'end of life' care.
I hope that you can get some care that will help your mother.
I am also sorry to hear about all of the problems that your mother is experiencing. I agree with the other people posting here. The type of chemo that your mother would receive might really help with the myeloma, and have her feeling much better too. She has already undertaken some treatments, such as radiation, so this would be more to help her cope with the multiple myeloma.
I have a quick question. If she is in such pain and distress, could she not be admitted to a hospital for care? I am not sure if she can get Revlimid, an oral pill, for initial therapy in Canada. It might be Velcade, which is by infusion or subcutaneous injection. Do you know what the treatment protocol would be?
I know that, where I live in Alberta, there are mobile vans that would come by to get blood work done. That is for patients who cannot get to a lab.
As far as I understand, 'palliative' care is to relieve symptoms of pain, and is not the same as 'hospice' care, which is more the 'end of life' care.
I hope that you can get some care that will help your mother.
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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: Caring for my mother (who is refusing chemotherapy)
Hello Luweby,
So sorry to hear about your mother diagnosis and refusal of chemo. It sounds like your mom is very clear about what she wants at this stage in her life. Although I am younger than your mother (53), I have been concerned about how my "end of life" might play out.
I hope this is not inappropriate, but in Canada, your mother now has a voice about just that. Doctor assisted suicide (now legal in Canada) is a choice for end stage myeloma patients:
http://www.dyingwithdignity.ca/resources/blog_news/post/1301
Since this is an important issue for me, I have completed the Advance Care Planning Kit (found on the link above) so that my wishes are known. Until that time, I am enjoying each day to the fullest.
Yes, there are great advances in cancer care that could add years to your mother's life, but is that what she wants?
Best Wishes
Vanessa
So sorry to hear about your mother diagnosis and refusal of chemo. It sounds like your mom is very clear about what she wants at this stage in her life. Although I am younger than your mother (53), I have been concerned about how my "end of life" might play out.
I hope this is not inappropriate, but in Canada, your mother now has a voice about just that. Doctor assisted suicide (now legal in Canada) is a choice for end stage myeloma patients:
http://www.dyingwithdignity.ca/resources/blog_news/post/1301
Since this is an important issue for me, I have completed the Advance Care Planning Kit (found on the link above) so that my wishes are known. Until that time, I am enjoying each day to the fullest.
Yes, there are great advances in cancer care that could add years to your mother's life, but is that what she wants?
Best Wishes
Vanessa
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vanessa - Name: Vanessa Hargrove
- Who do you know with myeloma?: me
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Caring for my mother (who is refusing chemotherapy)
Hi Vanessa,
Thanks for the additional information in your posting.
I think everyone who has posted in this thread respects Luwebby's mother's right to decide for herself whether or not she wants to receive treatment. I said as much in my own posting, when I specifically wrote:
"We all respect your mother's right to choose what treatment she wants and doesn't want."
But I also added a very important caveat:
"But her decision should be an informed decision, and, right now, she may be making her decision based on misinformation."
If you disagree with that caveat, then you are disagreeing with a basic principle that most people believe should be part of the right to die, which is INFORMED consent. This is so important in discussions on this subject because, if informed consent is not part of the process, the process can be abused by parties who do NOT have the best interests of the patient in mind.
And, if Luwebby's mother has made her decision based on misperceptions about what myeloma treatment might mean for her, then her "consent" in this case is by definition misinformed.
Yes, it can be a sign of true love to let someone decide to abstain from treatment they feel will give them only a horrible one or two more years of life. But it is just as much -- or perhaps even more -- a sign of true love to make absolutely certain that a family member or friend you care about knows all their options, correctly, when they make their decision.
P.S. - I just saw that you edited your posting, and you seem to have misunderstood Luwebby's mother's situation. She is not end-stage. She was diagnosed just two months ago and has had barely any substantive treatment. That is why those of us who have expressed concern have said what we have said.
Thanks for the additional information in your posting.
I think everyone who has posted in this thread respects Luwebby's mother's right to decide for herself whether or not she wants to receive treatment. I said as much in my own posting, when I specifically wrote:
"We all respect your mother's right to choose what treatment she wants and doesn't want."
But I also added a very important caveat:
"But her decision should be an informed decision, and, right now, she may be making her decision based on misinformation."
If you disagree with that caveat, then you are disagreeing with a basic principle that most people believe should be part of the right to die, which is INFORMED consent. This is so important in discussions on this subject because, if informed consent is not part of the process, the process can be abused by parties who do NOT have the best interests of the patient in mind.
And, if Luwebby's mother has made her decision based on misperceptions about what myeloma treatment might mean for her, then her "consent" in this case is by definition misinformed.
Yes, it can be a sign of true love to let someone decide to abstain from treatment they feel will give them only a horrible one or two more years of life. But it is just as much -- or perhaps even more -- a sign of true love to make absolutely certain that a family member or friend you care about knows all their options, correctly, when they make their decision.
P.S. - I just saw that you edited your posting, and you seem to have misunderstood Luwebby's mother's situation. She is not end-stage. She was diagnosed just two months ago and has had barely any substantive treatment. That is why those of us who have expressed concern have said what we have said.
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