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Re: 82 year old mother just diagnosed, is struggling
Anybody? Just wondering. Her follow up is tomorrow, and want to make sure there aren't specific questions I should be asking at this point.
Re: 82 year old mother just diagnosed, is struggling
I am certainly no expert on what treatment regimens are best for someone, but it doesn't seem unreasonable compared to what others have posted as far as their treatments go.
How is your mom doing since she's been home? I would think that is what is important as you go for follow up. Everyone's experience is so different with multiple myeloma that comparison is not always helpful.
With that said, for my husband, his first month on chemo was life changing for him. Due to an already existing brain injury, he was crazy as his myeloma became active. He had an infusion of cyclophosphamide (Cytoxan) and a shot of Velcade once a week for 4 weeks.
By the time we hit the 4 week mark, he finally knew who he was, and what was going on. So finally he was able to have a voice in all regards to his treatment! That is how we knew that the treatment was working, and his labs improved significantly in that time frame. So we continued that for four more cycles. He is still in remission.
Has your mom's pain improved at all? How about her general health and appearance? I would think the answers to those questions, along with lab results to see if treatment is working would be the best indicators of how well this treatment is working.
I hope you'll come back later and update us on how her appointment went today! Good luck!
How is your mom doing since she's been home? I would think that is what is important as you go for follow up. Everyone's experience is so different with multiple myeloma that comparison is not always helpful.
With that said, for my husband, his first month on chemo was life changing for him. Due to an already existing brain injury, he was crazy as his myeloma became active. He had an infusion of cyclophosphamide (Cytoxan) and a shot of Velcade once a week for 4 weeks.
By the time we hit the 4 week mark, he finally knew who he was, and what was going on. So finally he was able to have a voice in all regards to his treatment! That is how we knew that the treatment was working, and his labs improved significantly in that time frame. So we continued that for four more cycles. He is still in remission.
Has your mom's pain improved at all? How about her general health and appearance? I would think the answers to those questions, along with lab results to see if treatment is working would be the best indicators of how well this treatment is working.
I hope you'll come back later and update us on how her appointment went today! Good luck!
Re: 82 year old mother just diagnosed, is struggling
Hi Avodaughter,
My feelings on the treatment are similar to what Cindylouise posted. This seems like a good overall approach, but the doctor is obviously best suited to make this call.
My only suggestion might be to explore the use of prednisone instead of dex with the doctor. Some elderly patients tolerate prednisone better than dex. The dosing and scheduling of all these drugs can also have pretty significant impacts on how well a patient will tolerate the drugs. So, be sure you are vocal about various issues as the treatment progresses so that her doc will know to tweak these items.
You will also find lots of posts on this site for side effects due to Zometa (I am assuming this is the bisphosphonate your Mom will use). Drink lots of water, perhaps discuss using a very slow IV infusion and taking some acetaminophen before and after the infusion are some of the tips I remember reading on the subject. The side effects apparently only last a day or two.
Best of luck to you and your mom.
My feelings on the treatment are similar to what Cindylouise posted. This seems like a good overall approach, but the doctor is obviously best suited to make this call.
My only suggestion might be to explore the use of prednisone instead of dex with the doctor. Some elderly patients tolerate prednisone better than dex. The dosing and scheduling of all these drugs can also have pretty significant impacts on how well a patient will tolerate the drugs. So, be sure you are vocal about various issues as the treatment progresses so that her doc will know to tweak these items.
You will also find lots of posts on this site for side effects due to Zometa (I am assuming this is the bisphosphonate your Mom will use). Drink lots of water, perhaps discuss using a very slow IV infusion and taking some acetaminophen before and after the infusion are some of the tips I remember reading on the subject. The side effects apparently only last a day or two.
Best of luck to you and your mom.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: 82 year old mother just diagnosed, is struggling
Hi Advodaughter,
What did the doctor say about zapping your mother's rib lesion with radiation to ease the pain? I ask because I discovered I had myeloma when I was trying to figure out why my ribs hurt (mutiple lesions).
I did NOT have radiation. Instead, the dexamethasone took the pain away and over time, the bisphosphonate (Zometa) filled in the holes in all of my lesions more than 50%.
I'd think twice about subjecting your mother to radiation at her age.
Dana A
What did the doctor say about zapping your mother's rib lesion with radiation to ease the pain? I ask because I discovered I had myeloma when I was trying to figure out why my ribs hurt (mutiple lesions).
I did NOT have radiation. Instead, the dexamethasone took the pain away and over time, the bisphosphonate (Zometa) filled in the holes in all of my lesions more than 50%.
I'd think twice about subjecting your mother to radiation at her age.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: 82 year old mother just diagnosed, is struggling
Thanks all. She started the regimen last Friday. She commented on a reduction of pain and I noticed her being somewhat brighter when I saw her on Tuesday, and then again when I spoke to her on Wednesday evening. I was actually quite pleased with her progress in those few days.
Unfortunately, when she arrived at her appointment this morning, it was immediately apparent that things were VERY not right. She was incoherent - incapable of carrying on a conversation, combined with bizarre statements and inappropriate behaviour - complaining of constant thirst, and looked AWFUL.
Sure enough, her chems came back from the lab with a significantly elevated calcium. Also, we have strong suspicions that, despite the best efforts of the excellent visiting nurse who has been stopping in every couple of days since her discharge from rehab, medications and doses have been badly confused and/or missed and/or who knows when he hasn't been around to handle it. She almost certainly hasn't been correctly dosing her insulin, and I have a hunch that she might have double-dosed on pain killers, further adding to her confusion.
So ... she is back in the hospital as an inpatient for observation for now. They want to put her on a drip to get calcium levels back down and then reassess. She did not cope well with this news. She's so scared, not really understanding what she's being told even when I "translate" for her, and just sat and cried.
While today was tough sledding (understatement), she's where she needs to be. She needs far more skilled care than she was assigned, and I'm hoping that when (if?) she is discharged, further assistance can be arranged. I can't be there every day and my dad really can't cope without help (he has frailties and issues of his own which means he is NOT a good caregiver). I'm relieved that he'll get a break and I don't have to worry for a couple of days, but it has been a distressing day, and I'm kind of preparing myself for the worst at this point.
PS darnold, at this point we haven't got that far. If she stabilizes and we move forward with treatment, I'll definitely bear that in mind. Thank you!
Unfortunately, when she arrived at her appointment this morning, it was immediately apparent that things were VERY not right. She was incoherent - incapable of carrying on a conversation, combined with bizarre statements and inappropriate behaviour - complaining of constant thirst, and looked AWFUL.
Sure enough, her chems came back from the lab with a significantly elevated calcium. Also, we have strong suspicions that, despite the best efforts of the excellent visiting nurse who has been stopping in every couple of days since her discharge from rehab, medications and doses have been badly confused and/or missed and/or who knows when he hasn't been around to handle it. She almost certainly hasn't been correctly dosing her insulin, and I have a hunch that she might have double-dosed on pain killers, further adding to her confusion.
So ... she is back in the hospital as an inpatient for observation for now. They want to put her on a drip to get calcium levels back down and then reassess. She did not cope well with this news. She's so scared, not really understanding what she's being told even when I "translate" for her, and just sat and cried.
While today was tough sledding (understatement), she's where she needs to be. She needs far more skilled care than she was assigned, and I'm hoping that when (if?) she is discharged, further assistance can be arranged. I can't be there every day and my dad really can't cope without help (he has frailties and issues of his own which means he is NOT a good caregiver). I'm relieved that he'll get a break and I don't have to worry for a couple of days, but it has been a distressing day, and I'm kind of preparing myself for the worst at this point.
PS darnold, at this point we haven't got that far. If she stabilizes and we move forward with treatment, I'll definitely bear that in mind. Thank you!
Re: 82 year old mother just diagnosed, is struggling
I'm so sorry the news was not good today!
Is there anyone else who is available to help you with all of this? Even someone who can stop in when it's time for meds to make sure she's getting the right doses at the right times? That's all assuming she gets released home again anytime soon.
Another option is increased home care. I can't tell if you're getting all the home care services you should be.
This is what we've had for home care in the past. We had a nurse, the number of days was decided of course by insurance and patient need. We also had PT, OT, and speech therapy. At all of the times when we've had home care, I've had to take a leave from work, so we didn't need to have an aide come in for baths and such. But sometimes that is also a covered service.
Even if you don't think the need for each one of those specialties is necessary, take them anyway. That is one more person coming into their home and having eyes on your mom on days you can't be there. More eyes means more chances that someone will notice things may not be right.
OT can also work on daily tasks such as reminders for medications and management of medications. Same goes for speech therapy. People have a tendency not to totally understand the particulars of each specialty and what they can provide.
The other option is to pay for private nursing duty, which can be expensive. It doesn't necessarily mean a private nurse, but a homecare agency that sends out an aide for round the clock care or supervision. And even if you get to the point of needing hospice care, please know that even they do not provide round the clock care.
I hope this is helpful information as you navigate through things. And hopefully this hospital stay will turn her around quickly. My bigger concern would be if she goes back into skilled care, they may again not authorize the full treatment for her myeloma due to cost issues.
Wishing you all the best, I know how stressful it can be.
Is there anyone else who is available to help you with all of this? Even someone who can stop in when it's time for meds to make sure she's getting the right doses at the right times? That's all assuming she gets released home again anytime soon.
Another option is increased home care. I can't tell if you're getting all the home care services you should be.
This is what we've had for home care in the past. We had a nurse, the number of days was decided of course by insurance and patient need. We also had PT, OT, and speech therapy. At all of the times when we've had home care, I've had to take a leave from work, so we didn't need to have an aide come in for baths and such. But sometimes that is also a covered service.
Even if you don't think the need for each one of those specialties is necessary, take them anyway. That is one more person coming into their home and having eyes on your mom on days you can't be there. More eyes means more chances that someone will notice things may not be right.
OT can also work on daily tasks such as reminders for medications and management of medications. Same goes for speech therapy. People have a tendency not to totally understand the particulars of each specialty and what they can provide.
The other option is to pay for private nursing duty, which can be expensive. It doesn't necessarily mean a private nurse, but a homecare agency that sends out an aide for round the clock care or supervision. And even if you get to the point of needing hospice care, please know that even they do not provide round the clock care.
I hope this is helpful information as you navigate through things. And hopefully this hospital stay will turn her around quickly. My bigger concern would be if she goes back into skilled care, they may again not authorize the full treatment for her myeloma due to cost issues.
Wishing you all the best, I know how stressful it can be.
Re: 82 year old mother just diagnosed, is struggling
Personally, I'd go very easy on Dad, or any family member / friend who are trying to care for "Mum", ....when her calcium is out of whack.
I think this may be a portent of things to come, and you might best have a heart to heart with her PCP. Her med dosages may seem out--but Methinks it's the effect of the calcium, and other processes.
She could slip very quickly...if her metabolites continue to be errant.
Good luck.
I think this may be a portent of things to come, and you might best have a heart to heart with her PCP. Her med dosages may seem out--but Methinks it's the effect of the calcium, and other processes.
She could slip very quickly...if her metabolites continue to be errant.
Good luck.
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Rneb
Re: 82 year old mother just diagnosed, is struggling
Advodaughter,
Reading your posts bring back some bad experiences with my Mom who passed away from multiple myeloma in August. She was in so much pain the rehab she was at kept giving her pain meds to the point that she almost overdosed and had to be rushed to the hospital by ambulance. She was talking crazy and very combative. The doctors at the hospital kept trying to tell me that she might have dementia. I wanted no part in that conversation, sure she was confused but my mother was sharp as a tack just days before.
I think a lot of the problems treating multiple myeloma is that a lot of doctors and hospitals don't know too much about it and therefore do not treat the patient correctly. I wish now that my mother was well enough to travel into Boston to the Dana Farber Institute, where they have a top notch multiple myeloma treatment center.
It's been 3 months since my Mother passed and I have to remember to stop with the would of, should of, could of. My mother went undiagnosed for over a year, her doctor kept telling her she had sciatica. We now know that she had this horrible cancer. By the time she was diagnosed it was too late, she was too weak to fight it. Mom died 4 months after diagnosis with many ambulance rides to the hospital for pneumonia and complications.
Please hang in there and never give up HOPE!!!
Reading your posts bring back some bad experiences with my Mom who passed away from multiple myeloma in August. She was in so much pain the rehab she was at kept giving her pain meds to the point that she almost overdosed and had to be rushed to the hospital by ambulance. She was talking crazy and very combative. The doctors at the hospital kept trying to tell me that she might have dementia. I wanted no part in that conversation, sure she was confused but my mother was sharp as a tack just days before.
I think a lot of the problems treating multiple myeloma is that a lot of doctors and hospitals don't know too much about it and therefore do not treat the patient correctly. I wish now that my mother was well enough to travel into Boston to the Dana Farber Institute, where they have a top notch multiple myeloma treatment center.
It's been 3 months since my Mother passed and I have to remember to stop with the would of, should of, could of. My mother went undiagnosed for over a year, her doctor kept telling her she had sciatica. We now know that she had this horrible cancer. By the time she was diagnosed it was too late, she was too weak to fight it. Mom died 4 months after diagnosis with many ambulance rides to the hospital for pneumonia and complications.
Please hang in there and never give up HOPE!!!
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sandy57 - Name: sandy57
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 78
Re: 82 year old mother just diagnosed, is struggling
Thank you all. Obviously, this story is not going to have a happy ending. Treatment was always a longshot given her age and other frailties; I feel it was (and may still be) worth trying, but long since accepted that it might be whistling in the dark. She's nearly 83 and, unlike a younger person, may not have the fight left in her. While painful for me, that's ok - I'm prepared to cope as well as anybody can be in these circumstances.
I visited last night, and other than accurately recognizing me (and my husband), she was completely incoherent. The nurse said she had been lucid in the morning, but had slipped throughout the afternoon; by the time we got there she was clanging / word salad / rambling and making no sense at all. HOWEVER .... she seems to be in much less pain, less frightened, and generally cheerful when she is in that state - it's hard on us, but easier on her, so I'm ok with it. She is rambling and near-impossible to understand, but she's smiling, eating, and moving more easily.
I gather she was even worse this morning when my Dad visited again - she insisted it was 1845 and repeatedly reminded him to go home and feed the pigs and chickens. To me, this is actually kind of an interesting indicator of how the brain works: every other visit, her last comment has been to remind my dad to feed the cat. Even while disturbing, it's fascinating ...
The disease and her calcium level is almost certainly the main cause, but the nurse told me yesterday that there was a marked decrease in lucidity when she gave her some Percocet; she actually knocked her back to tramadol later in the day to try and minimize the effects. So the drugs are certainly a component, but I think they are merely "icing on the cake" of what is already happening because of the disease.
They have given her the Zometa shot, so maybe there will be some improvement yet; I'm just going with each development as it happens, without expectations of any kind.
As for Dad - he's done the best he can, but there is NO WAY ON EARTH he can care for her at home. At last, skilled professionals are acknowledging that too, and hopefully if she is sent home (which I doubt she will be right now), there will be greater assistance than he has had so far. I guess that's next week's battle (or we will be told it's time to arrange for hospice care, something I am STRONGLY encouraging my father to pursue when the time comes).
Thanks again for the support - it DOES help to have somewhere to talk about it!!
I visited last night, and other than accurately recognizing me (and my husband), she was completely incoherent. The nurse said she had been lucid in the morning, but had slipped throughout the afternoon; by the time we got there she was clanging / word salad / rambling and making no sense at all. HOWEVER .... she seems to be in much less pain, less frightened, and generally cheerful when she is in that state - it's hard on us, but easier on her, so I'm ok with it. She is rambling and near-impossible to understand, but she's smiling, eating, and moving more easily.
I gather she was even worse this morning when my Dad visited again - she insisted it was 1845 and repeatedly reminded him to go home and feed the pigs and chickens. To me, this is actually kind of an interesting indicator of how the brain works: every other visit, her last comment has been to remind my dad to feed the cat. Even while disturbing, it's fascinating ...
The disease and her calcium level is almost certainly the main cause, but the nurse told me yesterday that there was a marked decrease in lucidity when she gave her some Percocet; she actually knocked her back to tramadol later in the day to try and minimize the effects. So the drugs are certainly a component, but I think they are merely "icing on the cake" of what is already happening because of the disease.
They have given her the Zometa shot, so maybe there will be some improvement yet; I'm just going with each development as it happens, without expectations of any kind.
As for Dad - he's done the best he can, but there is NO WAY ON EARTH he can care for her at home. At last, skilled professionals are acknowledging that too, and hopefully if she is sent home (which I doubt she will be right now), there will be greater assistance than he has had so far. I guess that's next week's battle (or we will be told it's time to arrange for hospice care, something I am STRONGLY encouraging my father to pursue when the time comes).
Thanks again for the support - it DOES help to have somewhere to talk about it!!
Re: 82 year old mother just diagnosed, is struggling
PS If you or anybody you know is facing this disease, be sure to mention ALL SYMPTOMS, or even "atypical things," to your doctor.
My mom's (lifelong) total denial about her health meant that even though at the time of the smoldering diagnosis she was quite symptomatic, because she didn't tell anybody those symptoms, no action was taken. It's now clear she'd been experiencing night sweats, lassitude, loss of appetite, and back pain for some months before her bone marrow biopsy, but she never told anybody about it. I fully accept that given her age and other medical issues it might have made no difference to current outcome, but it would have been a much better-informed and better-controlled process getting here.
My mom's (lifelong) total denial about her health meant that even though at the time of the smoldering diagnosis she was quite symptomatic, because she didn't tell anybody those symptoms, no action was taken. It's now clear she'd been experiencing night sweats, lassitude, loss of appetite, and back pain for some months before her bone marrow biopsy, but she never told anybody about it. I fully accept that given her age and other medical issues it might have made no difference to current outcome, but it would have been a much better-informed and better-controlled process getting here.
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