Hello,
i am new to the forum but have been reading a lot and have a question.
First off: My grandmother (82 years old) just got diagnosed with multiple myeloma and we are seeing the local hematologist / oncologist for treatment.
Is the local hematologist oncologist the correct person for the job? I did an online search and it seems the doctor is board certified for internal medicine, but I can't seems to find any other certifications.
The doctor did some blood test, urine test, and a skeletal x-ray and the doctors diagnosed her with multiple myeloma and recommended starting treatment.
Her bone biopsy has not been done yet, but she was already prescribed Revlimid, Velcade, and Zometa for her 3 treatment medicines and she is currently taking dexamethasone (steroid that also is supposed to help fight the multiple myeloma).
Thanks in advance for any help.
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Re: What sort of doctor diagnoses & treats multiple myeloma?
Hi mynameisrus,
A hematologist / oncologist is the right kind of doctor to see for multiple myeloma. However, it pays to locate a hematologist / oncologist that specializes in multiple myeloma. If you let us know what city your grandmother is in, folks on this forum can make some recommendations as to where to find some of these specialists.
The regimen you describe is a very efficacious and common one to use in the front-line treatment of multiple myeloma. However, that regimen may be altered by some doctors depending on how frail your grandmother is and/or what findings show up on her bone marrow biopsy. In any case, it never hurts to get a second opinion regarding a proposed treatment plan.
A hematologist / oncologist is the right kind of doctor to see for multiple myeloma. However, it pays to locate a hematologist / oncologist that specializes in multiple myeloma. If you let us know what city your grandmother is in, folks on this forum can make some recommendations as to where to find some of these specialists.
The regimen you describe is a very efficacious and common one to use in the front-line treatment of multiple myeloma. However, that regimen may be altered by some doctors depending on how frail your grandmother is and/or what findings show up on her bone marrow biopsy. In any case, it never hurts to get a second opinion regarding a proposed treatment plan.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What sort of doctor diagnoses & treats multiple myeloma?
Thank you for the reply.
We are located on the Island of Kauai in Hawaii. I did a search on the site for listed specialized clinics in my area, and the University of Hawaii Cancer Center came up, but I'm not sure if they have a specific myeloma specialist there.
I spoke to my grandmother's nurse last week and asked what stage of the myeloma my grandmother was in, and the nurse advised me that there were no particular stages for this type of cancer.
i also asked why she was prescribed that particular treatment regimen (Revlimid, Velcade, Zometa) and she explained that this was just what everyone gets when they are diagnosed with myeloma. I then asked her if there were any particular test that they could do to determine the best treatment plan, and her answer was no, there is no such test and it's basically a trial-and-error procedure to determine what medicines will work in her particular situation.
From my research, the stage that she is in will depend on the type of treatments they administer. I was also under the impression that there are test that can be done to determine what the best treatment options would be for a particular individuals situation (I saw something from the Mayo Clinic in this regard). I am confused as to why the nurse would say there are no stages to this type of cancer and no test that can be done to determine the best plan of action for the treatment regimen.
Am I misunderstanding something?
Thanks again for the reply.
We are located on the Island of Kauai in Hawaii. I did a search on the site for listed specialized clinics in my area, and the University of Hawaii Cancer Center came up, but I'm not sure if they have a specific myeloma specialist there.
I spoke to my grandmother's nurse last week and asked what stage of the myeloma my grandmother was in, and the nurse advised me that there were no particular stages for this type of cancer.
i also asked why she was prescribed that particular treatment regimen (Revlimid, Velcade, Zometa) and she explained that this was just what everyone gets when they are diagnosed with myeloma. I then asked her if there were any particular test that they could do to determine the best treatment plan, and her answer was no, there is no such test and it's basically a trial-and-error procedure to determine what medicines will work in her particular situation.
From my research, the stage that she is in will depend on the type of treatments they administer. I was also under the impression that there are test that can be done to determine what the best treatment options would be for a particular individuals situation (I saw something from the Mayo Clinic in this regard). I am confused as to why the nurse would say there are no stages to this type of cancer and no test that can be done to determine the best plan of action for the treatment regimen.
Am I misunderstanding something?
Thanks again for the reply.
Re: What sort of doctor diagnoses & treats multiple myeloma?
There really aren't stages of myeloma when it is active. Someone who is labeled as Stage III may have a very good response to treatment where someone who is labeled Stage I may not have a good response. The bone marrow biopsy results and the genetic report on mutations that may be present are more useful and can lead a doctor towards a particular treatment regimen. Also, what is used is the presence, or absence, of CRAB symptoms. You mentioned that your mother will be getting Zometa infusions. Does she have bone lesions?
Although Revlimid, Velcade and dexamethasone are very commonly prescribed as induction therapy, they aren't the only induction drugs that can be used. A myeloma specialist would look at your mother's age, her overall health, her test results, etc, to decide on the appropriate treatment for your mother. The other thing that can be varied is the dose of the drugs, particularly Revlimid and dex.
I personally wouldn't just take the current oncologist's word on what all myeloma patients receive. If you have to travel to see the specialist, it is also common for a specialist to coordinate care with a local oncologist for treatment, lab testing, etc. That way you wouldn't need to travel to see the specialist as often.
All the best to your mother in beginning this journey with myeloma,
Nancy in Phila
Although Revlimid, Velcade and dexamethasone are very commonly prescribed as induction therapy, they aren't the only induction drugs that can be used. A myeloma specialist would look at your mother's age, her overall health, her test results, etc, to decide on the appropriate treatment for your mother. The other thing that can be varied is the dose of the drugs, particularly Revlimid and dex.
I personally wouldn't just take the current oncologist's word on what all myeloma patients receive. If you have to travel to see the specialist, it is also common for a specialist to coordinate care with a local oncologist for treatment, lab testing, etc. That way you wouldn't need to travel to see the specialist as often.
All the best to your mother in beginning this journey with myeloma,
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: What sort of doctor diagnoses & treats multiple myeloma?
To add to Nancy's great comments, the Mayo guidelines you are likely thinking of are the mSMART guidelines (link). But do keep in mind that this is just one organization's suggestion regarding treatment approaches based on one's cytogenetics. While the Mayo team is well-respected in myeloma circles, there are equally qualified specialists elsewhere that may choose a different treatment course than what the Mayo might suggest.
There are also a few folks on this forum from Hawaii who may chime in regarding the doctors that they use. Tom Shell is a regular contributor on this forum and columnist at The Beacon (you can view his columns here). It may be worth a short hop over to Honolulu to visit with the University of Hawaii team, but I will defer to those that actually have experience with this group:
https://myelomabeacon.org/resources/treatment-centers/#Hawaii
And, like Nancy said, your local onc can usually work and coordinate with a multiple myeloma specialist of your choosing who may be located remotely.
There are also a few folks on this forum from Hawaii who may chime in regarding the doctors that they use. Tom Shell is a regular contributor on this forum and columnist at The Beacon (you can view his columns here). It may be worth a short hop over to Honolulu to visit with the University of Hawaii team, but I will defer to those that actually have experience with this group:
https://myelomabeacon.org/resources/treatment-centers/#Hawaii
And, like Nancy said, your local onc can usually work and coordinate with a multiple myeloma specialist of your choosing who may be located remotely.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: What sort of doctor diagnoses & treats multiple myeloma?
Thank you for the replies. Yes, my grandmother did the skeletal scan and there are 2 small bone lesions that were found.
The doctor, who I confirmed is board certified in hematology and oncology, said that because of her age, the growth is not rapid and the lesions are small.
However, she can barely move around and is in a great deal of pain.
She is currently taking the dex and morphine to try to manage the pain, but hasn't started on any of the chemo drugs yet.
The nurse said that a specialist was not needed and another patient that they were currently treating was seeing a specialist, but the "specialist" didn't advise them to do anything differently that they were already doing for treatments.
Just trying to make sure that she is getting the correct care.
Thanks again for all the replies.
The doctor, who I confirmed is board certified in hematology and oncology, said that because of her age, the growth is not rapid and the lesions are small.
However, she can barely move around and is in a great deal of pain.
She is currently taking the dex and morphine to try to manage the pain, but hasn't started on any of the chemo drugs yet.
The nurse said that a specialist was not needed and another patient that they were currently treating was seeing a specialist, but the "specialist" didn't advise them to do anything differently that they were already doing for treatments.
Just trying to make sure that she is getting the correct care.
Thanks again for all the replies.
Re: What sort of doctor diagnoses & treats multiple myeloma?
Aloha Mynameisrus,
Multiple myeloma is complicated! The replies above sound right on to me. Unfortunately, this strange disease is different for each of us. Some folks are treatment resistant and some respond very well to treatment. The treatments can also vary quite widely, as can each patient's tolerance of the treatment.
The good news is that many of us tolerate our treatments quite well and lead full lives despite our diagnosis. There will most likely be some trial and error involved in getting the treatment dialed in, but this is often done without much difficulty.
As for the availability of multiple myeloma specialists in Hawaii, I am not sure that there are any doctors devoted only to this disease. This doesn't mean there aren't any, just that I don't know of any.
That said, I can recommend the oncology group at Straub Clinic and Hospital very highly. My oncologist, Dr. Ian Okazaki, is an oncologist and hematologist. While he doesn't specialize in myeloma, he does have a number of patients with myeloma and is very good at what he does. There are other oncologist / hematologists on Oahu as well that also see multiple myeloma patients.
My experience has been that I was better off finding a local doc that I could work with than one that was necessarily a specialist at only my disease.
I am also a patient at City of Hope in Los Angeles for my bone marrow transplant when that becomes necessary. I have a myeloma specialist there, but I don't like or trust him anywhere near as much as I do my local oncologist. While he has more disease-specific experience, I felt that he was not as in tune with my specific situation. I have also seen a specialist at the Mayo Clinic in Phoenix and found that hospital to be excellent.
I'm sorry, but I have no knowledge of the doctors on Kauai.
Good luck and Much Aloha,
Tom
Multiple myeloma is complicated! The replies above sound right on to me. Unfortunately, this strange disease is different for each of us. Some folks are treatment resistant and some respond very well to treatment. The treatments can also vary quite widely, as can each patient's tolerance of the treatment.
The good news is that many of us tolerate our treatments quite well and lead full lives despite our diagnosis. There will most likely be some trial and error involved in getting the treatment dialed in, but this is often done without much difficulty.
As for the availability of multiple myeloma specialists in Hawaii, I am not sure that there are any doctors devoted only to this disease. This doesn't mean there aren't any, just that I don't know of any.
That said, I can recommend the oncology group at Straub Clinic and Hospital very highly. My oncologist, Dr. Ian Okazaki, is an oncologist and hematologist. While he doesn't specialize in myeloma, he does have a number of patients with myeloma and is very good at what he does. There are other oncologist / hematologists on Oahu as well that also see multiple myeloma patients.
My experience has been that I was better off finding a local doc that I could work with than one that was necessarily a specialist at only my disease.
I am also a patient at City of Hope in Los Angeles for my bone marrow transplant when that becomes necessary. I have a myeloma specialist there, but I don't like or trust him anywhere near as much as I do my local oncologist. While he has more disease-specific experience, I felt that he was not as in tune with my specific situation. I have also seen a specialist at the Mayo Clinic in Phoenix and found that hospital to be excellent.
I'm sorry, but I have no knowledge of the doctors on Kauai.
Good luck and Much Aloha,
Tom
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tscshale - Name: Tom
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 04/12
- Age at diagnosis: 49
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