Hi,
Amanda, I can fully understand what you mention. My dad, 78, was a perfectly healthy individual with a roof top garden with a nursery of 100 odd plants. He has been super active up until October 6th, 2014. He suddenly developed lower back pain, pain below left ribs. He was unable to sleep the whole of October. Suddenly, after a month of different tests, we were told he has multiple myeloma.
We are in India and he is being treated in HCG, Bangalore. I am with my dad, who at first refused to accept the diagnosis. Now he has undergone 7 chemo with dex and Velcade every week. He has not been able to walk for almost a month now. He uses the walker and we also stand behind him, as he feels he will fall.
The chemo has made him very weak. The pain which was the original complaint has completely gone. He has had bouts of vomiting, sleeplessness, and emotional disturbance on account of the chemo. His biggest concern is the fact that he has major weakness from the chemo. In his case, we detected the cancer very late. He has been told that it's Stage III A. We are hoping the chemo will help him. After 8 chemos, we will redo the tests to determine the effectiveness of the chemo. I am learning that we as caregivers need to have a lot of courage and patience.
Please do update your mom's state. It will immensely help folks like me.
Thanks and good luck to your mom and you, Amanda.
Forums
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Cmouli - Name: Cmouli
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: Nov 4, 2014
- Age at diagnosis: 78
Re: Any elderly multiple myeloma patients here?
My father 70 was diagnosed with multiple myeloma last year. He now has lesions in his spine, pneumonia has weakened him drastically, and he has a lot of back pain. We are extremely scared of chemo and know several family members who died after chemo therapy. Before the pneumonia, my father was very independent, active, and healthy. Any piece of advice would help.
Re: Any elderly multiple myeloma patients here?
Hi SolidDays,
I'm sorry to hear about your father.
As you read posts here in the Myeloma Beacon, you'll find lots of good information. But since you ask for advice, I'll offer two simple pieces of advice.
First, try to have your father go to a myeloma specialist for tests and treatment. Multiple myeloma is a rare but complex disease, so you want to be treated by someone who sees lots of cases and is up to date on the latest research. Here,
https://myelomabeacon.org/resources/treatment-centers/
is a list of myeloma treatment centers. If you post information about where your father lives, I'm sure folks on this forum will be glad to offer information about their experiences with centers near your father.
Second, although you mentioned that you are afraid of chemo, please don't be so afraid. There are new chemotherapy treatments for multiple myeloma, particularly so-called "targeted" agents, that are often very effective with relatively minor side effects. Left untreated, multiple myeloma will continue to grow and will further damage your father's bones and kidneys. I think I read a while back that the average life expectancy after diagnosis of symptomatic multiple myeloma if it is not treated is 1.4 years. And it is not a pretty 1.4 years. If your father has multiple myeloma, he needs treatment, and these treatment courses involve some form of chemotherapy (sometimes with radiation or surgery too).
Best wishes to you and your father. Please keep us posted on how things go.
Mike
I'm sorry to hear about your father.
As you read posts here in the Myeloma Beacon, you'll find lots of good information. But since you ask for advice, I'll offer two simple pieces of advice.
First, try to have your father go to a myeloma specialist for tests and treatment. Multiple myeloma is a rare but complex disease, so you want to be treated by someone who sees lots of cases and is up to date on the latest research. Here,
https://myelomabeacon.org/resources/treatment-centers/
is a list of myeloma treatment centers. If you post information about where your father lives, I'm sure folks on this forum will be glad to offer information about their experiences with centers near your father.
Second, although you mentioned that you are afraid of chemo, please don't be so afraid. There are new chemotherapy treatments for multiple myeloma, particularly so-called "targeted" agents, that are often very effective with relatively minor side effects. Left untreated, multiple myeloma will continue to grow and will further damage your father's bones and kidneys. I think I read a while back that the average life expectancy after diagnosis of symptomatic multiple myeloma if it is not treated is 1.4 years. And it is not a pretty 1.4 years. If your father has multiple myeloma, he needs treatment, and these treatment courses involve some form of chemotherapy (sometimes with radiation or surgery too).
Best wishes to you and your father. Please keep us posted on how things go.
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: Any elderly multiple myeloma patients here?
Thanks Mikeb. We leave in Northern California / San Francisco area.
Re: Any elderly multiple myeloma patients here?
Hi SolidDays,
I do not live in the SF / Bay Area (though I love visiting that area!), so I can't give you first-hand info on facilities there. However, I have seen posts here on the Beacon forum from folks who have been treated at UCSF and Stanford.
Best wishes to you and your father.
Mike
I do not live in the SF / Bay Area (though I love visiting that area!), so I can't give you first-hand info on facilities there. However, I have seen posts here on the Beacon forum from folks who have been treated at UCSF and Stanford.
Best wishes to you and your father.
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: Any elderly multiple myeloma patients here?
My father has been diagnosed with multiple myeloma at an age of 81 years in the first week of January 2015. He was complaining of constipation which led to a blood examination revealing a very high creatinine level (8.0) . Further investigation in to the cause of the high creatinine revealed a high level of protein chain, thus multiple myeloma.
He is being administered steroids which is bringing down the creatinine level. He has started complaining of excessive pain in legs (knee downwards). His diet is almost nil.
Shall keep things posted.
He is being administered steroids which is bringing down the creatinine level. He has started complaining of excessive pain in legs (knee downwards). His diet is almost nil.
Shall keep things posted.
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Ajay
Re: Any elderly multiple myeloma patients here?
Hi mikeb,
We started dexamethasone and Velcade treatments for my dad, and he is feeling much better so far. He is taking dexamethasone daily for 5 days, then stops for two days. We also did a kyphoplasty procedure for his fractured spine, which got rid of most of the pain.
He is still complaining about back pain, but he is in much better shape. He is able to walk around with no walker and can sleep on a bed.
We started dexamethasone and Velcade treatments for my dad, and he is feeling much better so far. He is taking dexamethasone daily for 5 days, then stops for two days. We also did a kyphoplasty procedure for his fractured spine, which got rid of most of the pain.
He is still complaining about back pain, but he is in much better shape. He is able to walk around with no walker and can sleep on a bed.
Re: Any elderly multiple myeloma patients here?
Hi SolidDays,
Glad to hear you father is doing better! And hoping that trend continues for a long time!
Mike
Glad to hear you father is doing better! And hoping that trend continues for a long time!
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: Any elderly multiple myeloma patients here?
I am new to posting (this is my first one) and to all things multiple myeloma.
By way of brief intro, I am reaching out on my behalf of my 78-year old mother. We are in the midst of medical testing now to figure out what is going on.
In a nutshell, my mother has been dealing with peripheral neuropathy and rheumatoid arthritis for years. She has been able to stay relatively busy over this period of time, but due to the neuropathy in her feet has not been able to get around on foot as well as she used to. Her rheumatologist recently ran blood work (I think in response to persistently elevated SED rate), and that is how we discovered elevated M-protein (g) in her blood (app. 2.2 g/dL).
The rheum sent us to a local hem/onc who did a 24-h hour urinanalysis and light chain was picked up there. I don't not sure why she ran the urine test, as the light chain (lambda) had already been picked up in the rheum's prior blood work. Anyway, as a result of the protein picked up in urine, hem/onc ordered a PET scan. Just had that done and we are now waiting for results. The hem/onc said after that, she will also likely order a bone marrow biopsy. We are bracing ourselves, and I am scrambling to learn as much as I can as quickly as I can so that we can figure out best next steps.
I am so incredibly relieved to find all of you and this resource. In my whirlwind research, I see a lot of information, but not as much on myeloma in the elderly. This specific string of postings here was a tremendous relief to me.
We are in the Washington D.C. metropolitan area, and are looking for a good hem/onc with experience / specialization in myeloma. Once we have established a relationship with a local specialist, I am hoping that we could then also get thoughts from "super specialists" / centers outside of the area that we could perhaps consult with and that the local specialist could work with to evaluate and develop a plan for my mom.
Any and all suggestions, please, would be so very much appreciated. World feels turned upside down right now and the only thing that seems to help give peace of mind is to arm with as much information and knowledge as possible.
Sincere thanks.
By way of brief intro, I am reaching out on my behalf of my 78-year old mother. We are in the midst of medical testing now to figure out what is going on.
In a nutshell, my mother has been dealing with peripheral neuropathy and rheumatoid arthritis for years. She has been able to stay relatively busy over this period of time, but due to the neuropathy in her feet has not been able to get around on foot as well as she used to. Her rheumatologist recently ran blood work (I think in response to persistently elevated SED rate), and that is how we discovered elevated M-protein (g) in her blood (app. 2.2 g/dL).
The rheum sent us to a local hem/onc who did a 24-h hour urinanalysis and light chain was picked up there. I don't not sure why she ran the urine test, as the light chain (lambda) had already been picked up in the rheum's prior blood work. Anyway, as a result of the protein picked up in urine, hem/onc ordered a PET scan. Just had that done and we are now waiting for results. The hem/onc said after that, she will also likely order a bone marrow biopsy. We are bracing ourselves, and I am scrambling to learn as much as I can as quickly as I can so that we can figure out best next steps.
I am so incredibly relieved to find all of you and this resource. In my whirlwind research, I see a lot of information, but not as much on myeloma in the elderly. This specific string of postings here was a tremendous relief to me.
We are in the Washington D.C. metropolitan area, and are looking for a good hem/onc with experience / specialization in myeloma. Once we have established a relationship with a local specialist, I am hoping that we could then also get thoughts from "super specialists" / centers outside of the area that we could perhaps consult with and that the local specialist could work with to evaluate and develop a plan for my mom.
Any and all suggestions, please, would be so very much appreciated. World feels turned upside down right now and the only thing that seems to help give peace of mind is to arm with as much information and knowledge as possible.
Sincere thanks.
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mariec - Name: mariec
- Who do you know with myeloma?: my mom
- When were you/they diagnosed?: March 2015 (MGUS)
- Age at diagnosis: 77
Re: Any elderly multiple myeloma patients here?
Hi Marie,
I'm sorry to hear that about your mom's situation, but I'm glad you've reached out to this forum.
Your idea of working with a specialist that can consult with your local oncologist is a good idea and is a strategy that several of us on this forum utilize, including myself. I will leave it to others familiar with the DC area to make recommendations on where you can find multiple myeloma specialists.
It sounds like your doc is running some of the more critical tests like a PET/CT scan and a bone marrow biopsy. So the doc is being thorough, which is good news.
Many docs still like to run a 24 hour UPEP test even though free light chains have already been detected in the blood serum. To understand why this is the case, see Dr. Shah's comments here:
"24 hour UPEP and free light chain (FLC) half life," forum thread started Jul 19, 2014
In any case, try not to worry too much while you wait for the test results to come in. Many elderly patients discover that they have multiple myeloma only after they experience a major skeletal issue such as a fractured vertebrae. It doesn't sound like that has happened in your mom's situation, which you should be thankful for. If she does end up having symptomatic multiple myeloma, she can likely avoid this kind of debilitating situation through drug treatment.
Best of luck to you and your mom on the upcoming test results and please keep us updated.
I'm sorry to hear that about your mom's situation, but I'm glad you've reached out to this forum.
Your idea of working with a specialist that can consult with your local oncologist is a good idea and is a strategy that several of us on this forum utilize, including myself. I will leave it to others familiar with the DC area to make recommendations on where you can find multiple myeloma specialists.
It sounds like your doc is running some of the more critical tests like a PET/CT scan and a bone marrow biopsy. So the doc is being thorough, which is good news.
Many docs still like to run a 24 hour UPEP test even though free light chains have already been detected in the blood serum. To understand why this is the case, see Dr. Shah's comments here:
"24 hour UPEP and free light chain (FLC) half life," forum thread started Jul 19, 2014
In any case, try not to worry too much while you wait for the test results to come in. Many elderly patients discover that they have multiple myeloma only after they experience a major skeletal issue such as a fractured vertebrae. It doesn't sound like that has happened in your mom's situation, which you should be thankful for. If she does end up having symptomatic multiple myeloma, she can likely avoid this kind of debilitating situation through drug treatment.
Best of luck to you and your mom on the upcoming test results and please keep us updated.
Last edited by Multibilly on Sun Apr 12, 2015 6:33 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
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