I am a 35-year-old married mother to four whose 61-year-old mother moved in with multiple myeloma, diagnosed 6 months ago. She had a 40-day hospital stay 6 weeks post diagnosis. After her first round of Revlimid, Velcade, and dex, she went downhill immediately and became bed ridden with uncontrollable pain and later developed pneumonia. She was ventilated for 9 days. I thought for sure we'd lose her.
This happened so fast. I spent the summer by my mother's bedside, advocating and trying to make sense of this terrible tragedy. It was my duty as the leader of HER ship to inform family of her daily struggle. My kids were Mom-less. My husband came to the rescue and really stepped up for all of us.
At the end of the grueling 40 days, we knew we had no choice but to bring Mom home with us. I quit my job. I've been taking over her whole life. WHOLE LIFE. We have days where she is bedridden, days when the pain is so bad we end up in the ER and admitted. Life has changed so much for all of us.
This journey is so painful, and lonely at times. To watch your parent struggle and lose every ability to live a life of decent quality; it's a struggle no one could have ever prepared me for. I feel like we are all struggling. It's a very sad time.
Blessings to everyone here. My heart goes out to all of you. I read thru this thread and cried quiet tears in the corner of my couch while my baby boy was playing on the floor.
Just a young mom trying to take care of a lot of people and a terminal Mother ♡
Forums
Re: Final stage of multiple myeloma
Hello Cortney:
I am very sorry to hear of the difficulty of your mother, you, and the rest of your family.
At this difficult time, I am quite sure that your mother knows and understands the love of her daughter, which is a blessing for you both.
Your children, by your example, learned and saw the role of a loving child, who tries to give back a small amount of the gift of love it is to raise a child. Good luck to you.
I am very sorry to hear of the difficulty of your mother, you, and the rest of your family.
At this difficult time, I am quite sure that your mother knows and understands the love of her daughter, which is a blessing for you both.
Your children, by your example, learned and saw the role of a loving child, who tries to give back a small amount of the gift of love it is to raise a child. Good luck to you.
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JPC - Name: JPC
Re: Final stage of multiple myeloma
Hello Cortney,
I'm also very sorry to hear about your mother's situation. I know you're doing the best you can, but it's a very tough road.
You mentioned that your mom was on Revlimid, Velcade, and dex for awhile, but went downhill quickly. Has she been on any other anti-myeloma regimen(s) other than that? I'm no doctor, but it sounds to me like multiple myeloma is at the root of a lot of your mother's medical problems. I think if the myeloma could be stopped or slowed, that would help your mother's other issues.
So I would suggest that you contact a myeloma specialist in your area. If you want to let us know where you live, people in this forum can give you recommendations. Or check out the Beacon's list of myeloma treatment centers.
Don't give up hope! There are many other anti-myeloma agents that a specialist can choose from these days. And there are many stories here in the Beacon of people who have had amazing recoveries after being in about the same shape that it sounds like your mother is in.
Best wishes to you and your mother.
Mike
I'm also very sorry to hear about your mother's situation. I know you're doing the best you can, but it's a very tough road.
You mentioned that your mom was on Revlimid, Velcade, and dex for awhile, but went downhill quickly. Has she been on any other anti-myeloma regimen(s) other than that? I'm no doctor, but it sounds to me like multiple myeloma is at the root of a lot of your mother's medical problems. I think if the myeloma could be stopped or slowed, that would help your mother's other issues.
So I would suggest that you contact a myeloma specialist in your area. If you want to let us know where you live, people in this forum can give you recommendations. Or check out the Beacon's list of myeloma treatment centers.
Don't give up hope! There are many other anti-myeloma agents that a specialist can choose from these days. And there are many stories here in the Beacon of people who have had amazing recoveries after being in about the same shape that it sounds like your mother is in.
Best wishes to you and your mother.
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: Final stage of multiple myeloma
Hello Cortney,
I can empathize with your situation. I am a 52 year old Mom with 3 teenage boys and my mother suffered from stage 4 lung cancer which she miraculously beat thanks in part to my diligence in researching her condition and finding doctors to provide cutting edge services. Sadly, while in remission, she had a brain bleed from blood thinners that left her cognitively impaired. While she doesn't live with me, I take care of her long distance, and it is nearly a full time job. I'm sick, I have a sick child, and my mother requires round the clock care and I have assumed responsibility for her entire life as well.
When you become a Mom, you expect that role will always be your first priority, and it is a disappointment when life or death decisions face you every day that overshadow not only the joy of parenthood but even meeting the demands of every day, and being a parent comes second to being a caregiver and, in my case, a patient.
My best to you in your efforts to juggle all those responsibilities and feel good about your contributions. She is very lucky to have you:)
Best
J
I can empathize with your situation. I am a 52 year old Mom with 3 teenage boys and my mother suffered from stage 4 lung cancer which she miraculously beat thanks in part to my diligence in researching her condition and finding doctors to provide cutting edge services. Sadly, while in remission, she had a brain bleed from blood thinners that left her cognitively impaired. While she doesn't live with me, I take care of her long distance, and it is nearly a full time job. I'm sick, I have a sick child, and my mother requires round the clock care and I have assumed responsibility for her entire life as well.
When you become a Mom, you expect that role will always be your first priority, and it is a disappointment when life or death decisions face you every day that overshadow not only the joy of parenthood but even meeting the demands of every day, and being a parent comes second to being a caregiver and, in my case, a patient.
My best to you in your efforts to juggle all those responsibilities and feel good about your contributions. She is very lucky to have you:)
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Final stage of multiple myeloma
Hello to Cortney and all caregivers,
Although all our journeys differ to a degree, I think we all feel a deep connection to anyone in our shoes. God bless you and your family, Cortney. As a caregiver, I understand the loneliness that you feel. I also know no one wishes for anyone to feel that way, but the fact is we do. It's a hard role.
We are not the ones with the illness, so we should feel lucky. And we do! But it is a terrible position to be in, and I for one want you to know that you're allowed to feel sorry for where you are, to not like it, and to actually hate it at times. That doesn't mean that you don't love your Mother with all that you are. You hate this disease and the fact that no one should have to be where you are.
I'm so sorry and again wish you all the strength and belief in yourself that it takes. The Serenity Prayer has been my mantra for a lot of my life, but I never knew its strength for me until my husband was diagnosed.
Wishing you Love and Strength.
Although all our journeys differ to a degree, I think we all feel a deep connection to anyone in our shoes. God bless you and your family, Cortney. As a caregiver, I understand the loneliness that you feel. I also know no one wishes for anyone to feel that way, but the fact is we do. It's a hard role.
We are not the ones with the illness, so we should feel lucky. And we do! But it is a terrible position to be in, and I for one want you to know that you're allowed to feel sorry for where you are, to not like it, and to actually hate it at times. That doesn't mean that you don't love your Mother with all that you are. You hate this disease and the fact that no one should have to be where you are.
I'm so sorry and again wish you all the strength and belief in yourself that it takes. The Serenity Prayer has been my mantra for a lot of my life, but I never knew its strength for me until my husband was diagnosed.
Wishing you Love and Strength.
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nanaofbkma - Name: Deb
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 65
Re: Final stage of multiple myeloma
Hi Cortney,
My thoughts and prayers are with you as you care for your Mother.
Earlier this year I was diagnosed with multiple myeloma, and I'm currently taking my third course of Velcade, Revlimid, and dexamethasone. Something that I've realized is that I must be active in all aspects of my healthcare. At the first sign of any changes in my condition, I alert the physicians, and the medication is adjusted as needed. This allows me to remain as active as possible.
Please, consider contacting another physician to determine if there is another protocol that will work better for your Mother, or perhaps a change to the dosages would slow or stop the progression.
Blessings to both of you.
Patricia
My thoughts and prayers are with you as you care for your Mother.
Earlier this year I was diagnosed with multiple myeloma, and I'm currently taking my third course of Velcade, Revlimid, and dexamethasone. Something that I've realized is that I must be active in all aspects of my healthcare. At the first sign of any changes in my condition, I alert the physicians, and the medication is adjusted as needed. This allows me to remain as active as possible.
Please, consider contacting another physician to determine if there is another protocol that will work better for your Mother, or perhaps a change to the dosages would slow or stop the progression.
Blessings to both of you.
Patricia
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Patricia
Re: Final stage of multiple myeloma
My mom is battling multiple myeloma for 10 years. She may be seeing her final days though. Her platelet count is really low, so she is bleeding a lot inside her mouth. She also has been dealing with shingles for the past month, and it is still bothering her.
The doctor today said her bone marrow test indicates that it's no longer creating new platelets and that she would need to come once per week for a transfusion. However, he believed that an infection could be near and her body won't be able to fight it.
Lately she feels good for about two days after receiving the transfusion, but then not so well after those first few days as her counts start to drop.
I'm trying to prepare myself mentally for this, I've never lost anyone near and dear like this before. It's very difficult. I think mom is too weak to try anything new and sounds ready to give up.
The doctor today said her bone marrow test indicates that it's no longer creating new platelets and that she would need to come once per week for a transfusion. However, he believed that an infection could be near and her body won't be able to fight it.
Lately she feels good for about two days after receiving the transfusion, but then not so well after those first few days as her counts start to drop.
I'm trying to prepare myself mentally for this, I've never lost anyone near and dear like this before. It's very difficult. I think mom is too weak to try anything new and sounds ready to give up.
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Lt1981
Re: Final stage of multiple myeloma
Hello LT1981.
So sorry to hear your Mom is struggling. It's so difficult for everyone involved. Has her doctor mentioned palliative care or hospice? We struggled with that decision with my father-in-law, who had esophageal cancer. It's so hard to talk about, but it's about what your Mom wants at this point, and it's so heartbreaking for all.
Best wishes to you and your Mom.
So sorry to hear your Mom is struggling. It's so difficult for everyone involved. Has her doctor mentioned palliative care or hospice? We struggled with that decision with my father-in-law, who had esophageal cancer. It's so hard to talk about, but it's about what your Mom wants at this point, and it's so heartbreaking for all.
Best wishes to you and your Mom.
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elizabethmwm - Name: Elizabeth M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 8/20/2012
- Age at diagnosis: 57
Re: Final stage of multiple myeloma
Hi Cortney,
I'm so sorry you and your family are going through this. I second the suggestion to look into palliative care and/or hospice. A palliative care nurse told me people often confuse that with hospice, when in fact it is just making sure that the patient has all the support they need to relieve as much pain and anxiety as possible. When the time comes, hospice can also be a wonderful resource, as I discovered when my mother passed away. It's not giving up and saying that the person is going to die imminently, but acknowledging that the time will come in the next six months or so. They have many resources from counseling to music therapy to help with managing practical aspects.
Thinking of you on your journey and wishing you strength.
I'm so sorry you and your family are going through this. I second the suggestion to look into palliative care and/or hospice. A palliative care nurse told me people often confuse that with hospice, when in fact it is just making sure that the patient has all the support they need to relieve as much pain and anxiety as possible. When the time comes, hospice can also be a wonderful resource, as I discovered when my mother passed away. It's not giving up and saying that the person is going to die imminently, but acknowledging that the time will come in the next six months or so. They have many resources from counseling to music therapy to help with managing practical aspects.
Thinking of you on your journey and wishing you strength.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Final stage of multiple myeloma
The doctor has not mentioned either palliative care or hospice, but we are expecting it to come up soon being that in her condition, the doctor already told us she is too weak to take any more treatments, and nothing could be done at this point other than give her these weekly platelets.
Sounds like everyone here has mostly positive things to say about hospice.
Sounds like everyone here has mostly positive things to say about hospice.
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Lt1981