Wow. Reading through the various posts in this discussion has been both heart wrenching and very helpful. My prayers are with all you who are suffering with this disease, watching a loved one suffer, or grieving the loss of a loved one.
My mother (now 57, diagnosed at 52) has what I understand to be a very advanced stage of multiple myeloma. She and my father have been together since they were 15, and while the thought of losing her is hard on all of us, it's unfathomable for him.
She is presently in the hospital where she is being monitored while being treated for an infection, most likely incurred while receiving platelets in the ER late last week. She seems to be growing more transfusion dependent. This recent trip to the ER was prompted by what my father described to me as a pretty horrific scene of incessant bleeding. During this hospital stay, she broke her collarbone simply putting pressure on her arm while pushing herself up to go use the bathroom. This was her third fracture (femur in December, arm in March). She's also lost a lot of weight and has had to undergo radiation for various presentations of plasmacytoma. In June, she was hospitalized for listeria.
We've been talking about all these episodes as though they were setbacks on her road to recovery. I'm now coming to accept that they all add up to indicate a poor prognosis. We were very encouraged by all the recent advances in the treatment of multiple myeloma and have imagined that if we could keep her alive long enough, she'd be able to benefit from new stuff on the horizon. Amazingly, this is still my parents' mentality.
It's mind blowing how much fight my mom still has in her. After having been told my her oncologist that her options were dwindling and it was time to start considering hospice, she and my dad got on a plane to fly out to the Mayo Clinic to seek a second opinion and try and pursue opportunities to participate in a clinical trial. She was devastated to learn that her low platelet count renders her ineligible but was very encouraged by a number of recommendations the doctor had her take back to her oncologist in Los Angeles.
I will never forget the image of my mom when I saw them off at the airport. As frail as she was after having battled listeria, she was determined to make sure she wasn't leaving any options on the table in the fight for her life. She's truly courageous and so strong.
My mom's cancer never ceased to be responsive to the most recent treatment she's been on, which include Darzalex, Revlimid, and dex. The problem is that she's not tolerating it well, leading to constant interruptions. Upon discussing the outside doctor's recommendations with her oncologists, they've decided to put her on thalidomide (which she has not yet taken) and most likely resume the Darzalex. The rationale is that these drugs will be less depleting of her blood counts than Revlimid. I'm concerned, however, that perhaps her doctors are placating her with this treatment approach rather than offering up her optimal options.
I reached out to her main oncologist to try to better understand the possibilities, limits, and drawbacks to continued treatment and, in doing so, inquired about a procedure we heard about whereby her presently cryopreserved stem cells can be infused into her bone marrow absent having to undergo high-dose chemo (the idea being that it would replenish her enough to tolerate continued treatment).
Her doctor, and without mincing his words, said that while there's no real downside to her in trying that, he's not willing to have his staff take on all the heavy lifting that would be involved in making this happen when he has other patients whose lives can still be saved. Our conversation left me with the impression that she's no longer a high priority patient at that facility and that the team there is not invested in her.
My apologies if this discussion thread is not the appropriate place to go into such detail about treatment-related issues like this. But it all factors in to my struggle of how to facilitate smart decision making when it's starting to feel all too urgent. Some poorly handled medical decisions and some poorly chosen words along the way have damaged my parents' trust in her oncologists, and this makes it even more difficult to not only get everyone on the same page with what the goals actually are at this point, but also to ensure that my mom feels good about that.
It takes a lot for me to not go too far down the rabbit hole of coulda-shoulda-woulda-what if. But the notion that the end could be near compels me to seek out all the guidance I can in trying to help her make the most of the time she has left. I find it unfortunate that there's kind of a disconnect between palliative / hospice care and oncology. I feel like we should have the opportunity to engage these different types of care providers in a more integrated way. But because it's not set up that way, my mom sees hospice as "giving up". I've learned from reading through this forum, though, that many families wish they would've accepted hospice sooner rather than later. I want to be helpful to my mom in her identifying the point at which that becomes her best option.
Thank you kindly for having taken the time to read this. It was written in a moment of insomnia.
Forums
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jmariepadilla - Name: Jamie Padilla
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2012
- Age at diagnosis: 52
Re: Final stage of multiple myeloma
I wish I could give advice, but I am muddling through this disease myself. It is a very individual disease, and to have an advocate is almost a must. You are obviously articulate, intelligent, and on a mission.
I wanted to commend you on your commitment and love to your mother, and wish you and her, along with your father, blessings and strength as you travel the journey. The love and support received certainly helps healing.
There are members on here. that seem to have a more clear picture than the doctors. Experience is a great teacher. I understand you must be realistic while watching this unfold. Find a myeloma specialist you all like and feel comfortable with. Do not give up.
I wanted to commend you on your commitment and love to your mother, and wish you and her, along with your father, blessings and strength as you travel the journey. The love and support received certainly helps healing.
There are members on here. that seem to have a more clear picture than the doctors. Experience is a great teacher. I understand you must be realistic while watching this unfold. Find a myeloma specialist you all like and feel comfortable with. Do not give up.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Final stage of multiple myeloma
Jamie,
So sorry to hear about what your mother is facing. The challenge we all face is sorting through the different medical recommendations we receive. I'm glad you are able to help her with this.
Best wishes,
David
So sorry to hear about what your mother is facing. The challenge we all face is sorting through the different medical recommendations we receive. I'm glad you are able to help her with this.
Best wishes,
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Final stage of multiple myeloma
Thank you for your kind words.
My mother died last Thursday, August 17th, in the hospital. She had previously been admitted August 3rd, released August 10th, and re-admitted August 14th when she broke her other clavicle and had another bleeding episode from her critically low platelet count.
In her last week, the changes we observed in her accelerated from day by day to moment by moment. I took a photo of her on August 10th upon her return home from hospital. My 1 year old was caressing her feet and she was smiling. It was the last photo ever taken of her, and I'm almost positive it was the last time we saw her smile. From there on out, her pain worsened and extreme fatigue began to set in. She also seemed to experience some anxiety. Given that none of us had ever even heard her complain since her diagnosis, the changes were dramatic. Nonetheless, my dad was convinced it was because she had been without treatment at that point for about 4 weeks. He thought she'd get better once her new treatment began to take effect. I did not think that, but I cannot say I was prepared for what was to come. Her decline was rapid and her final days were brutal. I'm not easily rattled, but seeing my mother suffer like that was traumatic. The trauma was intense enough that (for me, at least) it superseded the grief and sadness of my loss. It's like I've been decompressing from having been in the thick of it all and have been too depleted to experience more than just momentary sadness.
Her last day, one of her oncologists came to see her in the hospital. The conversation was centered around treatment. It seemed insane to me. At that point, I knew she was dying and was frustrated with my own inability to openly acknowledge it. I think she knew I knew, but my dad was tunnel vision focused on "the battle". While this meant missed opportunities (not least of all, getting her the appropriate end-of-life care), I would say there's an upside to this. My dad has the peace of mind that they left no stone unturned. Given that he's the one who has to carry on, I guess that's more important than her dying a "good death". I understand that it's not unusual for families to totally bury their heads in the sand in the face of a loved one's terminal illness. We did this, yet we also – and without ever really talking about it – all rallied from the time of her diagnosis to make the most of our days with her. And she did have some REALLY good days. Even right up until her last couple of weeks.
My mother died last Thursday, August 17th, in the hospital. She had previously been admitted August 3rd, released August 10th, and re-admitted August 14th when she broke her other clavicle and had another bleeding episode from her critically low platelet count.
In her last week, the changes we observed in her accelerated from day by day to moment by moment. I took a photo of her on August 10th upon her return home from hospital. My 1 year old was caressing her feet and she was smiling. It was the last photo ever taken of her, and I'm almost positive it was the last time we saw her smile. From there on out, her pain worsened and extreme fatigue began to set in. She also seemed to experience some anxiety. Given that none of us had ever even heard her complain since her diagnosis, the changes were dramatic. Nonetheless, my dad was convinced it was because she had been without treatment at that point for about 4 weeks. He thought she'd get better once her new treatment began to take effect. I did not think that, but I cannot say I was prepared for what was to come. Her decline was rapid and her final days were brutal. I'm not easily rattled, but seeing my mother suffer like that was traumatic. The trauma was intense enough that (for me, at least) it superseded the grief and sadness of my loss. It's like I've been decompressing from having been in the thick of it all and have been too depleted to experience more than just momentary sadness.
Her last day, one of her oncologists came to see her in the hospital. The conversation was centered around treatment. It seemed insane to me. At that point, I knew she was dying and was frustrated with my own inability to openly acknowledge it. I think she knew I knew, but my dad was tunnel vision focused on "the battle". While this meant missed opportunities (not least of all, getting her the appropriate end-of-life care), I would say there's an upside to this. My dad has the peace of mind that they left no stone unturned. Given that he's the one who has to carry on, I guess that's more important than her dying a "good death". I understand that it's not unusual for families to totally bury their heads in the sand in the face of a loved one's terminal illness. We did this, yet we also – and without ever really talking about it – all rallied from the time of her diagnosis to make the most of our days with her. And she did have some REALLY good days. Even right up until her last couple of weeks.
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jmariepadilla - Name: Jamie Padilla
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: 2012
- Age at diagnosis: 52
Re: Final stage of multiple myeloma
I'm sorry to hear that you lost your mother, Jamie. It sounds like a very tough couple of weeks, and thank you for sharing your experience with us.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Final stage of multiple myeloma
Jamie-
Take some comfort in knowing that you did all that you could for your mother. Yes, it would have been nice to have hospice involved in the last days of your mother's life, but that was not what your father wanted. I'm sure that he knew that your mother was dying, but wasn't able to let go yet.
I'm sending all of you a lot of love and a virtual hug to move through the coming days. Your father is going to need a lot of support as he grieves,
Nancy
Take some comfort in knowing that you did all that you could for your mother. Yes, it would have been nice to have hospice involved in the last days of your mother's life, but that was not what your father wanted. I'm sure that he knew that your mother was dying, but wasn't able to let go yet.
I'm sending all of you a lot of love and a virtual hug to move through the coming days. Your father is going to need a lot of support as he grieves,
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Final stage of multiple myeloma
Hi,
My mother was diagnosed with multiple myeloma at the of 59. She had her own stem cells harvested and transplanted along with weeks of high-dose chemotherapy. She recovered amazingly well! She did lose approx 5 inches (12.5 cm) in height from compression of her vertebrae. 11 years after the transplant (6 years ago), the cancer again reared its ugly head.
For the last 6 years she has been on steroids, chemo pills, Tylenol 3’s, Ativan. This has worked very well for her until this year. Her body can no longer take all if the medications and the cancer is causing many problems. Blood clots, poor circulation, multiple spine fractures, the list goes on. I too fear she is close to the end and is losing a very hard fought battle.
Every single multiple myeloma sufferer is so brave and strong for all that they go through. The best to you all.
My mother was diagnosed with multiple myeloma at the of 59. She had her own stem cells harvested and transplanted along with weeks of high-dose chemotherapy. She recovered amazingly well! She did lose approx 5 inches (12.5 cm) in height from compression of her vertebrae. 11 years after the transplant (6 years ago), the cancer again reared its ugly head.
For the last 6 years she has been on steroids, chemo pills, Tylenol 3’s, Ativan. This has worked very well for her until this year. Her body can no longer take all if the medications and the cancer is causing many problems. Blood clots, poor circulation, multiple spine fractures, the list goes on. I too fear she is close to the end and is losing a very hard fought battle.
Every single multiple myeloma sufferer is so brave and strong for all that they go through. The best to you all.
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Loriz
Re: Final stage of multiple myeloma
Eleven years! She is brave and is giving a tough fight. She may bounce back. You never know! With myeloma, anything is a possibility.
All of us, myeloma or not, have to leave one day. All we can do is give them all love on earth, be with them every minute, and live every single day the way they want.
Lots of love and hugs your way. You are not alone.
All of us, myeloma or not, have to leave one day. All we can do is give them all love on earth, be with them every minute, and live every single day the way they want.
Lots of love and hugs your way. You are not alone.
Re: Final stage of multiple myeloma
As I mentioned before, my mum has multiple myeloma and has now reached the stage where no more treatment can be given so is just receiving palliative care. She has been sent home to die (in her words).
She has now started slurring when speaking sometimes. Does anyone know what this could be? We thought it was due to the extreme fatigue.
She has now started slurring when speaking sometimes. Does anyone know what this could be? We thought it was due to the extreme fatigue.
Re: Final stage of multiple myeloma
Dear Sazjo,
We are also starting this final journey and our hearts are so heavy. My husband is severely cognitively impaired at this stage, which I find to be a blessing. There could be a number of causes for your Mom's speech - - ammonia or a bleed - - or another cause that they don't full understand.
I pray for peace for your Mom, you and your family.
Laurie
We are also starting this final journey and our hearts are so heavy. My husband is severely cognitively impaired at this stage, which I find to be a blessing. There could be a number of causes for your Mom's speech - - ammonia or a bleed - - or another cause that they don't full understand.
I pray for peace for your Mom, you and your family.
Laurie
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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