Hello everyone. My mom is 83 and a very active woman. No medical problems and never a broken bone until 1 month ago. She broke a toe and that's when we found out she had multiple myeloma. No symptoms at all, just low anemia and with meds that number was climbing. The doctor said its in 3 places and we asked her what stage n she replied 3 or the high end of 2. With my mom so very active, still cooking, driving everyday and can outwalk us in the mall it's very hard for us to accept.
My mom is still in the diagnosis stage so no meds or treatments have been giving yet. My mom has stated she doesn't want chemo and I can respect her but not my wishes. I'm just wondering what to expect? I pray she lives longer than expected with this disease. I'm afraid when they start treatment she will become sick? I know it's strange?
I think her disease is called smoldering myeloma where there are no symptoms and I'm afraid because I don't want this disease to sneak up.
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Re: Mother, 83, just diagnosed - what to expect?
Hello from gray Seattle Myneed,
I am sorry to hear that your mother was diagnosed with myeloma. However there is hope.
The treatments for this disease have improved dramatically over the past 40 years and even elderly patients are benefiting. Many elderly patients are understandably reluctant to undergo chemotherapy regimens reminiscent of those available 20 + years ago. Fortunately, things have improved in recent decades and, for the great majority of patients with myeloma, treatment is available that is tolerable and efficacious.
In addition, the most commonly used therapies are not really chemotherapy. The new agents I am referring to would include Revlimid (a pill) and Velcade (an injection). Both of these are drugs that can have remarkable efficacy in myeloma with little to no side effects. There are also other drugs that help to prevent common complications of myeloma, such as bone fractures. Bone fractures are common in this disease and can cause very severe chronic pain. This will decrease a patient's quality of life dramatically. The drugs Aredia or Zometa are routinely used to decrease the risk of bony fractures by half in myeloma patients.
I strongly enourage you to become educated about the disease to help your mother to understand what is available and what is right for her (or not) in terms of treatment. The Myeloma Beacon is an excellent place to gain knowledge.
Perhaps your mother would consider one of the non-chemotherapy drugs like Revlimid (a pill). In 2014, it would be a shame for someone to suffer through this difficult disease when efficacious and well tolerated treatment is available.
I have found that it is not unusual for patients to initially consider refusing treatment, but with education and understanding find acceptable treatment for their disease.
I wish both of you all my best.
I am sorry to hear that your mother was diagnosed with myeloma. However there is hope.
The treatments for this disease have improved dramatically over the past 40 years and even elderly patients are benefiting. Many elderly patients are understandably reluctant to undergo chemotherapy regimens reminiscent of those available 20 + years ago. Fortunately, things have improved in recent decades and, for the great majority of patients with myeloma, treatment is available that is tolerable and efficacious.
In addition, the most commonly used therapies are not really chemotherapy. The new agents I am referring to would include Revlimid (a pill) and Velcade (an injection). Both of these are drugs that can have remarkable efficacy in myeloma with little to no side effects. There are also other drugs that help to prevent common complications of myeloma, such as bone fractures. Bone fractures are common in this disease and can cause very severe chronic pain. This will decrease a patient's quality of life dramatically. The drugs Aredia or Zometa are routinely used to decrease the risk of bony fractures by half in myeloma patients.
I strongly enourage you to become educated about the disease to help your mother to understand what is available and what is right for her (or not) in terms of treatment. The Myeloma Beacon is an excellent place to gain knowledge.
Perhaps your mother would consider one of the non-chemotherapy drugs like Revlimid (a pill). In 2014, it would be a shame for someone to suffer through this difficult disease when efficacious and well tolerated treatment is available.
I have found that it is not unusual for patients to initially consider refusing treatment, but with education and understanding find acceptable treatment for their disease.
I wish both of you all my best.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Mother, 83, just diagnosed - what to expect?
" My mom has stated she doesn't want chemo and I can respect her but not my wishes."
I think you need to have a serious talk with mother. As the doctor said, the new treatments in no way resemble the chemo for most cancers. I went through Velcade and prednisone and the only side effect I had was with the prednisone. The steroid made it hard for me to sleep, but I only received it 3 times at the start of a regimen.
I was 70 at diagnoses, 74 now, and would / will not hesitate to take Velcade, or something similar, again. I serious doubt I will do another SCT, but I doubt I would be a candidate now anyway.
I think you need to have a serious talk with mother. As the doctor said, the new treatments in no way resemble the chemo for most cancers. I went through Velcade and prednisone and the only side effect I had was with the prednisone. The steroid made it hard for me to sleep, but I only received it 3 times at the start of a regimen.
I was 70 at diagnoses, 74 now, and would / will not hesitate to take Velcade, or something similar, again. I serious doubt I will do another SCT, but I doubt I would be a candidate now anyway.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Mother, 83, just diagnosed - what to expect?
Hello Dr, Libby,
While I strongly agree with your main points - that there is hope for treating and living with multiple myeloma and that the treatment options have improved dramatically in recent years - I was surprised that you referred to Revlimid (and Velcade) as non-chemotherapy drugs.
I'm on Revlimid maintenance therapy now, and my Revlimid bottle has a label on it that says, "Chemotherapy drug. Toxic. Dispose of as biohazard." As I'm sure you know, Revlimid has a long list of potential side effects, ranging from mild to life-threatening.
So all of this raises a question for me. I'd assumed that there is a well-established set of criteria that drugs must meet in order to be considered to be chemo agents, but I never have been entirely clear about what those criteria are. But maybe that's not the case, and the definition of "chemo agent" is a little fuzzier?
Or is it the case that because Revlimid is fairly new (and Velcade) that there is disagreement about whether they meet the criteria? What criteria does a drug need to meet in order to be considered to be a chemo agent?
While I strongly agree with your main points - that there is hope for treating and living with multiple myeloma and that the treatment options have improved dramatically in recent years - I was surprised that you referred to Revlimid (and Velcade) as non-chemotherapy drugs.
I'm on Revlimid maintenance therapy now, and my Revlimid bottle has a label on it that says, "Chemotherapy drug. Toxic. Dispose of as biohazard." As I'm sure you know, Revlimid has a long list of potential side effects, ranging from mild to life-threatening.
So all of this raises a question for me. I'd assumed that there is a well-established set of criteria that drugs must meet in order to be considered to be chemo agents, but I never have been entirely clear about what those criteria are. But maybe that's not the case, and the definition of "chemo agent" is a little fuzzier?
Or is it the case that because Revlimid is fairly new (and Velcade) that there is disagreement about whether they meet the criteria? What criteria does a drug need to meet in order to be considered to be a chemo agent?
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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: Mother, 83, just diagnosed - what to expect?
Hi Mike,
From what we've read and heard during discussions with myeloma specialists, there is a tendency to use the term "chemotherapy" to refer mainly to older cancer treatments which are not very specific in the way they attack cells -- including myeloma cells -- in the body.
An example of such an older drug would be melphalan.
For newer drugs, such as Velcade and Revlimid, myeloma specialist seem to prefer to use terminology such as "novel agents" or "targeted therapies", because the drugs are much more specific about attacking myeloma cells, rather than all cells in the body.
The fact that they are more specific in attacking myeloma cells, rather than lots of other kinds of cells, means that the newer drugs also (usually) have fewer side effects than the older drugs.
That being said, if you look up definitions of "chemotherapy," you will usually find that it includes just about any cancer drug, whether it is targeted or not.
In fact, many definitions of "chemotherapy" will say that it covers the use of drugs to treat any kind of disease, whether it be cancer, an infection, or even mental health disorders.
However, that definition seems to be increasingly less accepted.
At The Beacon, we have the convention of using "chemotherapy" only to refer to older anti-myeloma therapies, as this seems to reflect how the term is usually used among myeloma specialists.
From what we've read and heard during discussions with myeloma specialists, there is a tendency to use the term "chemotherapy" to refer mainly to older cancer treatments which are not very specific in the way they attack cells -- including myeloma cells -- in the body.
An example of such an older drug would be melphalan.
For newer drugs, such as Velcade and Revlimid, myeloma specialist seem to prefer to use terminology such as "novel agents" or "targeted therapies", because the drugs are much more specific about attacking myeloma cells, rather than all cells in the body.
The fact that they are more specific in attacking myeloma cells, rather than lots of other kinds of cells, means that the newer drugs also (usually) have fewer side effects than the older drugs.
That being said, if you look up definitions of "chemotherapy," you will usually find that it includes just about any cancer drug, whether it is targeted or not.
In fact, many definitions of "chemotherapy" will say that it covers the use of drugs to treat any kind of disease, whether it be cancer, an infection, or even mental health disorders.
However, that definition seems to be increasingly less accepted.
At The Beacon, we have the convention of using "chemotherapy" only to refer to older anti-myeloma therapies, as this seems to reflect how the term is usually used among myeloma specialists.
Re: Mother, 83, just diagnosed - what to expect?
When I think of "conventional" non-targeted chemo (like what my poor sister is going through with her ovarian cancer treatment), I think of extreme weight loss, combined with hair loss and endless days of nausea and feeling like death warmed over. This is the picture I think many folks have when they hear the word "chemo".
So while the latest multiple myeloma treatments are anything but side-effect free, they are certainly in a different category side-effect wise than some of the older cancer drugs....and many folks experience little in the way of side effects when taking some of the newer cocktails.
So while the latest multiple myeloma treatments are anything but side-effect free, they are certainly in a different category side-effect wise than some of the older cancer drugs....and many folks experience little in the way of side effects when taking some of the newer cocktails.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother, 83, just diagnosed - what to expect?
Hi Beacon Staff and everyone else,
Best wishes for a happy, healthy New Year in 2014!
I agree with MikeB on his points. The novel agents appear to have many side effects, especially the longer they are used. For example I put a link up in another thread that long term use of Revlimid leads to lower production of CD4+ helper t cells. Neutropenia is also a well known side effect of Revlimid. Not having a properly functioning immune system in the long term is a major side effect IMO.
I have also read multiple patient reports and peer reviewed studies of patients that cannot tolerate Revlimid and other "targeted" myeloma therapies and have to discontinue them. "Conventional" chemotherapy agents are typically used for shorter periods. I had two high doses of "conventional" chemotherapy in 2011 and my quality of life is currently outstanding.
https://myelomabeacon.org/forum/revlimid-lenalidomide-maintenance-t2540.html
Quick question: Are there any examples of a blood cancer that gets cured by "targeted" therapies only? Something like Gleevec is not a cure, since the patient has to keep taking it. All blood cancers are potentially curable with conventional chemotherapy followed up immediately with non-specific immunotherapy.
"Allogeneic hematopoietic cell transplantation (alloHCT) is a curative therapy for hematologic disorders including acute lymphoblastic and myeloid leukemia, chronic lymphocytic and myeloid leukemia, Hodgkin's and non-Hodgkin lymphoma, multiple myeloma, and myelodysplastic syndrome."
http://www.ncbi.nlm.nih.gov/pubmed/23811537
In the long term patients that use conventional chemotherapy and immunotherapy and get off drugs can have quality of life on par with the general population in the long term. I have never seen a peer reviewed study that says patients on never ending cycles of "targeted" myeloma therapies have QOL on par with the generally population . I am sure patients that are cured of blood cancer do not mind that they had to use "conventional" chemotherapy years before.
Mark
Best wishes for a happy, healthy New Year in 2014!
I agree with MikeB on his points. The novel agents appear to have many side effects, especially the longer they are used. For example I put a link up in another thread that long term use of Revlimid leads to lower production of CD4+ helper t cells. Neutropenia is also a well known side effect of Revlimid. Not having a properly functioning immune system in the long term is a major side effect IMO.
I have also read multiple patient reports and peer reviewed studies of patients that cannot tolerate Revlimid and other "targeted" myeloma therapies and have to discontinue them. "Conventional" chemotherapy agents are typically used for shorter periods. I had two high doses of "conventional" chemotherapy in 2011 and my quality of life is currently outstanding.
https://myelomabeacon.org/forum/revlimid-lenalidomide-maintenance-t2540.html
Quick question: Are there any examples of a blood cancer that gets cured by "targeted" therapies only? Something like Gleevec is not a cure, since the patient has to keep taking it. All blood cancers are potentially curable with conventional chemotherapy followed up immediately with non-specific immunotherapy.
"Allogeneic hematopoietic cell transplantation (alloHCT) is a curative therapy for hematologic disorders including acute lymphoblastic and myeloid leukemia, chronic lymphocytic and myeloid leukemia, Hodgkin's and non-Hodgkin lymphoma, multiple myeloma, and myelodysplastic syndrome."
http://www.ncbi.nlm.nih.gov/pubmed/23811537
In the long term patients that use conventional chemotherapy and immunotherapy and get off drugs can have quality of life on par with the general population in the long term. I have never seen a peer reviewed study that says patients on never ending cycles of "targeted" myeloma therapies have QOL on par with the generally population . I am sure patients that are cured of blood cancer do not mind that they had to use "conventional" chemotherapy years before.
Mark
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Mark
Re: Mother, 83, just diagnosed - what to expect?
Guys,
While this discussion of "chemo" is a great topic, I just want to jump back in here and re-emphasize the message from Dr. Libby to Myneed and his mother. There is really no need to suffer through multiple myeloma without treatment and I think we would all encourage his mother to seek treatment.
While this discussion of "chemo" is a great topic, I just want to jump back in here and re-emphasize the message from Dr. Libby to Myneed and his mother. There is really no need to suffer through multiple myeloma without treatment and I think we would all encourage his mother to seek treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother, 83, just diagnosed - what to expect?
Yes Myneed, I have met a patient about your mother's age when I was undergoing treatment. I think she was taking Revlimid. I would really recommend that what Dr. Libby says as excellent advice! One wouldn't want anyone to go through the worst stages of myeloma actually.
Best to treat it in a timely fashion.
Best to treat it in a timely fashion.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Mother, 83, just diagnosed - what to expect?
Hi Myeloma Beacon Staff,
Thanks a lot for your answer. I had been thinking that novel agents were considered to be a sub-class of chemo agents. From your answer, I now see that that is not always the case, especially in the myeloma community.
Your answer also prompted me to go and read the Wikipedia page on chemotherapy, something I probably should have done a long time ago. While I didn't understand all the details on that page, I do think I learned a lot from it. And I think I now understand Dr. Libby's use of "non-chemo" a lot better.
I'm sorry about sort of hijacking this thread with my question, but you've helped me clear up a misunderstanding that I had, and I appreciate that.
Going back to the original post, Myneed, I certainly agree with others who have suggested that you should encourage your mother to reconsider her decision to not undergo treatment for her multiple myeloma. As folks have pointed out, it's not at all like chemo was 20 years ago.
Good luck!
Thanks a lot for your answer. I had been thinking that novel agents were considered to be a sub-class of chemo agents. From your answer, I now see that that is not always the case, especially in the myeloma community.
Your answer also prompted me to go and read the Wikipedia page on chemotherapy, something I probably should have done a long time ago. While I didn't understand all the details on that page, I do think I learned a lot from it. And I think I now understand Dr. Libby's use of "non-chemo" a lot better.
I'm sorry about sort of hijacking this thread with my question, but you've helped me clear up a misunderstanding that I had, and I appreciate that.
Going back to the original post, Myneed, I certainly agree with others who have suggested that you should encourage your mother to reconsider her decision to not undergo treatment for her multiple myeloma. As folks have pointed out, it's not at all like chemo was 20 years ago.
Good luck!
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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
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