Hello all. Today we got the news that my mom has multiple myeloma. I don't have a lot of information but would appreciate any advice on how to proceed.
My mom has rheumatoid arthritis. In the past two years she has had some strange things happen like anemia twice. I know she had a biopsy last spring which was negative. This past summer she was anemic again. In November she got very ill with no energy and diarrhea. Her liver enzymes were through the roof so they took her off of RA meds and we heard suspicions of lymphoma. They did a CAT scan of her hip and saw an "irregularity". My mom described it as looking like a black or gray round shape behind a bone. Her liver enzymes went back to good range so they dismissed lymphoma (or so she said; I am not sure if that is true). She went in for a biopsy of the irregularity last week hence today we were told multiple myeloma.
I know there is more information than she is telling us but that is all we know. She is scheduled for a PET scan on Tuesday and further testing.
She is located in Tallahassee Florida. She has been treated at Mayo for RA and I think they have a good program for this unless someone has a suggestion in Tallahassee.
My mom is 75 years old. From what I understand not a candidate for a transplant.
Any information you could give me in guidance for treatment I would be appreciative. I am reading through all your posts and trying to grasp what we are dealing with, and what I need to find out.
Any advice would be appreciated, thank you.
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Re: Mom just diagnosed
Stem cell transplant (SCT) used to be the standard of care for multiple myeloma. However, there are newer drugs whose efficacy questions the necessity of SCT, even for transplant eligible patients.
When I first heard of an SCT possibility, I was gung ho about it, and wondering why it wouldn't be the treatment of choice. However, after understanding the procedure and side effects a bit more (in order to kill the myeloma cells, you have to destroy healthy bone marrow), in comparison to modern novel chemo therapies, I was not as much a proponent.
There still may be options, even if SCT is not a possibility.
When I first heard of an SCT possibility, I was gung ho about it, and wondering why it wouldn't be the treatment of choice. However, after understanding the procedure and side effects a bit more (in order to kill the myeloma cells, you have to destroy healthy bone marrow), in comparison to modern novel chemo therapies, I was not as much a proponent.
There still may be options, even if SCT is not a possibility.
Re: Mom just diagnosed
I'm sorry to hear that your mother has RA and now has to add Myeloma into the mix. There have been some recent discussions on this forum about there possibly being a link between people who have autoimmune diseases also developing Myeloma.
Good resourses for information are both the International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF). Contact one, or both of them, to get some of their publications about Myeloma, Myeloma treatments, tests and what they mean, etc. They are both amazing resources and both very involved in funding research and lobbying state and federal legislatures about issues related to cancer and specifically to Myeloma.
When you go online for information look at the dates of any of the reports and treatment recommendations. Anything that is more than 2 years old is too old. Survival rates also should be ignored. Although there are many people who die within the periods of time mentioned, there are also many people living relatively good lives with this disease for many, many years.
Good luck with your research. If your mother isn't seeing a Myeloma specialist, I would suggest that she get a second opinion from one. Since she is already being treated for her RA at Mayo that would be a good place to start with a Myeloma specialist. That way her doctors would both be in the same system and her records would be available to both for better coordination of treatments.
Nancy in Phila
Good resourses for information are both the International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF). Contact one, or both of them, to get some of their publications about Myeloma, Myeloma treatments, tests and what they mean, etc. They are both amazing resources and both very involved in funding research and lobbying state and federal legislatures about issues related to cancer and specifically to Myeloma.
When you go online for information look at the dates of any of the reports and treatment recommendations. Anything that is more than 2 years old is too old. Survival rates also should be ignored. Although there are many people who die within the periods of time mentioned, there are also many people living relatively good lives with this disease for many, many years.
Good luck with your research. If your mother isn't seeing a Myeloma specialist, I would suggest that she get a second opinion from one. Since she is already being treated for her RA at Mayo that would be a good place to start with a Myeloma specialist. That way her doctors would both be in the same system and her records would be available to both for better coordination of treatments.
Nancy in Phila
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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: Mom just diagnosed
Dear kbev:
I am so sorry about your mom and am very glad that she has you. As a care partner for my mom these many years, the best advice I can give you is to choose a myeloma specialist rather than an oncologist so that you have a lot of confidence in your treatment plan going forward. Also, your mom may be a good candidate for a sct, health and not age, is the standard now. There are effective drugs now and many more in the pipeline so more treatment options are coming soon. Best to both you and your mom!
Kore
I am so sorry about your mom and am very glad that she has you. As a care partner for my mom these many years, the best advice I can give you is to choose a myeloma specialist rather than an oncologist so that you have a lot of confidence in your treatment plan going forward. Also, your mom may be a good candidate for a sct, health and not age, is the standard now. There are effective drugs now and many more in the pipeline so more treatment options are coming soon. Best to both you and your mom!
Kore
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kore
Re: Mom just diagnosed
I am sorry your Mom is contending with both RA and multiple myeloma. My husband, 72, was diagnosed at Mayo in Rochester with lambda light chain only myeloma about six months ago. I remember thinking along the same lines you are: keep all of his options open, including stem cell transplant.
Ask Mayo what their guidelines are for transplant in your mom's case. The first step is to complete all the testing and start the treatment process, including a test for determining the genetics of her disease. Mayo uses a risk-based protocol and will recommend a treatment protocol based on their staging of the disease (standard or high risk; low risk is reserved for people 55 and under). If they recommend a treatment program using melphalan as one of the drugs, that pretty much rules out a stem cell transplant later. Is the stem cell transplant option important to her? If so, University of Arkansas has a good track record. From what I understand, stem cell transplants are at the core of their total therapy approach.
See how she does with the initial treatment of approximately 4-6 month duration. If she is not eligible for or chooses against transplant, the expected course of treatment is, in total, about 18 months. It can be a viable option for a continued, good quality of life for her. There is a lot of reason to be hopeful. A tremendous amount of research and money is pouring into this disease. It has already improved on the treatment options and, for some, a cure may well be forthcoming. She'll need trusted friends and family around her. There are so many variants on this disease; it is not a 'one size fits all' environment.
My husband opted for the stem cell transplant. He was at the upper end of the age range for a transplant. He did very well with his first round of therapy, but was having substantial side effects from the drug treatments by the time the 5th month rolled around. He's about one month into the stem cell transplant. The first week was reasonably easy. the rest of it? Not so much. Like a majority of the patients, he required some time in hospital to deal with side effects and complications arising around day 9, when the stem cells really start to kick in and the body has to undertake the serious business of rebuilding its immune system and blood cells. He's tremendously fatigued and it's a struggle to eat enough and drink enough to keep up with all the demands his body is placing on him. It takes a good three months to work through this initial part of the transplant, according to the advice we were given prior to the procedure.
Ask Mayo what their guidelines are for transplant in your mom's case. The first step is to complete all the testing and start the treatment process, including a test for determining the genetics of her disease. Mayo uses a risk-based protocol and will recommend a treatment protocol based on their staging of the disease (standard or high risk; low risk is reserved for people 55 and under). If they recommend a treatment program using melphalan as one of the drugs, that pretty much rules out a stem cell transplant later. Is the stem cell transplant option important to her? If so, University of Arkansas has a good track record. From what I understand, stem cell transplants are at the core of their total therapy approach.
See how she does with the initial treatment of approximately 4-6 month duration. If she is not eligible for or chooses against transplant, the expected course of treatment is, in total, about 18 months. It can be a viable option for a continued, good quality of life for her. There is a lot of reason to be hopeful. A tremendous amount of research and money is pouring into this disease. It has already improved on the treatment options and, for some, a cure may well be forthcoming. She'll need trusted friends and family around her. There are so many variants on this disease; it is not a 'one size fits all' environment.
My husband opted for the stem cell transplant. He was at the upper end of the age range for a transplant. He did very well with his first round of therapy, but was having substantial side effects from the drug treatments by the time the 5th month rolled around. He's about one month into the stem cell transplant. The first week was reasonably easy. the rest of it? Not so much. Like a majority of the patients, he required some time in hospital to deal with side effects and complications arising around day 9, when the stem cells really start to kick in and the body has to undertake the serious business of rebuilding its immune system and blood cells. He's tremendously fatigued and it's a struggle to eat enough and drink enough to keep up with all the demands his body is placing on him. It takes a good three months to work through this initial part of the transplant, according to the advice we were given prior to the procedure.
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philatour
Re: Mom just diagnosed
I would say my mom is in fair/low health - maybe poor. I am not sure the criteria to determine this.
Along with RA she has high Blood pressure, high cholesterol. She had a heart attack about a year and a half ago. Seems to have no residual issues from that. Her RA is pretty aggressive. She has been off RA meds since last November. That is what lead to finding out she had multiple myeloma. She was sick, we thought maybe the flu. No energy at all. She went to the Dr. and her liver enzymes were through the roof. They suspected hepatitis but that came back negative. They also suspected lymphoma which was also negative. So they took her off RA drugs - the liver enzymes returned to normal. I can't remember why they decided to CAT scan her hip but that's when they saw either a lesion or a tumor (I don't know which because my mom refuses to discuss details). I suspect though that her Docs had been seeing issues in her urine tests prior to this (she had to get testing every 3 months to monitor liver with RA meds). She had a biopsy last year at this time that came back negative.
I wish I could find more information regarding RA/multiple myeloma at the same time. I keep pulling up medical journals when I google it which offer some information but are really so far over my head that I don't understand much.
We have decided to not go to Mayo immediately but rather to get her tests completed in Tallahassee first before choosing. I have now seen that so much determines course of treatment dependent on many factors. There may be better alternatives for her once we know what we are dealing with. I have since found out about Moffitt in Tampa of course we already knew about MD Anderson as well. Will wait and see whether conservative approach will be better or aggressive.
I am just not sure how much she can tolerate. She also seems to have weird side effects with medications. Aside from living in pain for 11 years with progressive RA my dad had a massive stroke last July. He has recovered well though not back to what it was like before. He cannot take care of her if she gets sick from treatment. I know that.
Its just very sad and overwhelming. i wish I could be positive but I am not. So many other things to consider like quality of life and how they are going to live. Right now Mom is primary caretaker. I was thinking initially that maybe, maybe she would be ok like the disease hasn't progressed very far and it would be while before treatment is necessary. While I am not doctor I can see that the symptoms she is presenting are not indicative of early stages.
Along with RA she has high Blood pressure, high cholesterol. She had a heart attack about a year and a half ago. Seems to have no residual issues from that. Her RA is pretty aggressive. She has been off RA meds since last November. That is what lead to finding out she had multiple myeloma. She was sick, we thought maybe the flu. No energy at all. She went to the Dr. and her liver enzymes were through the roof. They suspected hepatitis but that came back negative. They also suspected lymphoma which was also negative. So they took her off RA drugs - the liver enzymes returned to normal. I can't remember why they decided to CAT scan her hip but that's when they saw either a lesion or a tumor (I don't know which because my mom refuses to discuss details). I suspect though that her Docs had been seeing issues in her urine tests prior to this (she had to get testing every 3 months to monitor liver with RA meds). She had a biopsy last year at this time that came back negative.
I wish I could find more information regarding RA/multiple myeloma at the same time. I keep pulling up medical journals when I google it which offer some information but are really so far over my head that I don't understand much.
We have decided to not go to Mayo immediately but rather to get her tests completed in Tallahassee first before choosing. I have now seen that so much determines course of treatment dependent on many factors. There may be better alternatives for her once we know what we are dealing with. I have since found out about Moffitt in Tampa of course we already knew about MD Anderson as well. Will wait and see whether conservative approach will be better or aggressive.
I am just not sure how much she can tolerate. She also seems to have weird side effects with medications. Aside from living in pain for 11 years with progressive RA my dad had a massive stroke last July. He has recovered well though not back to what it was like before. He cannot take care of her if she gets sick from treatment. I know that.
Its just very sad and overwhelming. i wish I could be positive but I am not. So many other things to consider like quality of life and how they are going to live. Right now Mom is primary caretaker. I was thinking initially that maybe, maybe she would be ok like the disease hasn't progressed very far and it would be while before treatment is necessary. While I am not doctor I can see that the symptoms she is presenting are not indicative of early stages.
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kbev
7 posts
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