Hi All
This is a first post, as a family member suspects that they have multiple myeloma. This is all from 1 blood test from what I deem a strip mall doctor, but the blood work and physical symptoms do point very pointedly in the direction of multiple myeloma.
More blood work and the urinalysis has just been done and an appointment has been made with the local hematology and oncology specialist in the city, as recommended by the primary care doctor from the initial blood work results.
My questions is, how important is it to seek out a multiple myeloma specialist after diagnosis, and when after diagnosis should one be sought out if there is none in the city, i.e. immediately, after initial treatment, etc.
From what I read on this board, seeking someone who solely deals with this is far and away better than a hematology and oncology specialist.
I am worried that this family member will be stubborn and assume that this recommendation of the hematology and oncology specialist in his city will suffice, but I seriously doubt the quality of the healthcare in the city they live in, especially for a rarer form of cancer.
Thanks for any input.
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7 posts
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Re: Multiple myeloma specialist vs hematologist / oncologist
Hi HenryRoot,
This is a great question.
Multiple myeloma specialists are in fact hematologist / oncologists. It's just that they typically have a great deal of focus on multiple myeloma and closely related diseases, like amyloidosis, etc. Whereas most hematologists / oncologists deal with a wide variety of different cancers. Specialists see quite a few multiple myeloma patients each year, typically are involved in research on multiple myeloma, and attend conferences and deliver research papers focused on multiple myeloma. In this process, they learn about all the cutting-edge aspects of diagnosing and treating this disease - a field which is changing on a nearly daily basis and has a lot of nuances when it comes to treatment approaches.
If you let us know what part of the country you are in, folks on this forum can recommend the closest institutions where you will find a specialist. Note that one can usually establish a relationship with a remotely located specialist by having at least one appointment with him / her, and then have that specialist work with your local onc. Depending on the patient's situation, you may then only choose to see that specialist much less frequently than you would your local hematologist.
This remote kind of arrangement is in fact exactly what I do. I see my local onc every 2 months and then get out to see a remote specialist once a year ... although I probably won't see my specialist again until my disease status changes, or I just happen to be in that area of the country where the specialist is located.
This is a great question.
Multiple myeloma specialists are in fact hematologist / oncologists. It's just that they typically have a great deal of focus on multiple myeloma and closely related diseases, like amyloidosis, etc. Whereas most hematologists / oncologists deal with a wide variety of different cancers. Specialists see quite a few multiple myeloma patients each year, typically are involved in research on multiple myeloma, and attend conferences and deliver research papers focused on multiple myeloma. In this process, they learn about all the cutting-edge aspects of diagnosing and treating this disease - a field which is changing on a nearly daily basis and has a lot of nuances when it comes to treatment approaches.
If you let us know what part of the country you are in, folks on this forum can recommend the closest institutions where you will find a specialist. Note that one can usually establish a relationship with a remotely located specialist by having at least one appointment with him / her, and then have that specialist work with your local onc. Depending on the patient's situation, you may then only choose to see that specialist much less frequently than you would your local hematologist.
This remote kind of arrangement is in fact exactly what I do. I see my local onc every 2 months and then get out to see a remote specialist once a year ... although I probably won't see my specialist again until my disease status changes, or I just happen to be in that area of the country where the specialist is located.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma specialist vs hematologist / oncologist
I just want to tell you that, when my husband was diagnosed, he felt the same way, that he DID NOT need a specialist.
Well, after 4 rounds of RVD (Revlimid, Velcade, dexamethasone) therapy and his free light chains being erratic, and then a round of DR-PACE (dex, Revlimid, Cisplatin, Adriamycin, cyclophosphamide, and etoposide) and his free light chains going up instead of down, his own oncologist recommended we see a specialist. By the time we got to the specialist, my husband's light chains were almost up to where they were when he was diagnosed.
Right now, the specialist has him on a therapy that my husband's previous oncologist could not give him. So, the advantage of seeing a specialist is that they have more access to clinical trials and have the ability to think outside the box since they eat, sleep, and breathe myeloma.
Well, after 4 rounds of RVD (Revlimid, Velcade, dexamethasone) therapy and his free light chains being erratic, and then a round of DR-PACE (dex, Revlimid, Cisplatin, Adriamycin, cyclophosphamide, and etoposide) and his free light chains going up instead of down, his own oncologist recommended we see a specialist. By the time we got to the specialist, my husband's light chains were almost up to where they were when he was diagnosed.
Right now, the specialist has him on a therapy that my husband's previous oncologist could not give him. So, the advantage of seeing a specialist is that they have more access to clinical trials and have the ability to think outside the box since they eat, sleep, and breathe myeloma.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Multiple myeloma specialist vs hematologist / oncologist
Get a second opinion from a specialist as soon as possible after being diagnosed with multiple myeloma. If your family member does indeed have myeloma, I would suggest that you have that 2nd opinion appointment prior to starting any treatment. This is as long as their condition isn't so serious that immediate treatment is needed.
There have been some significant changes in what is considered to be the benchmark for starting treatment in people with smoldering multiple myeloma in the last few months. A local hematologist / oncologist who does not specialize in treating people with myeloma may not be aware of the changes. Also, a local oncologist may not be dealing with a lab that does the genetic testing of the materials from the bone marrow biopsy. These results are driving when and what to use for treatment more and more these days, as the researchers are identifying who is in the high risk category of myeloma.
Both MultiBilly and Melanie have highlighted the real importance of having a myeloma specialist on your husband's treatment team. Because of my location, 1 mile from a major myeloma research center, I see a specialist as a primary oncologist. My anxiety level decreased exponentially when I saw him for the first time, because he spent time explaining the disease, outlining possible treatments when, and if, I progressed to active myeloma, and assured me that he would be keeping a close eye on my condition, not just my lab values.
This relationship has continued over the 7 years since diagnosis. I know that I can ask him anything and talk with him about research and that he will take the time to converse with me about all things myeloma.
I hope that your family member is diagnosed with something that is much less serious and curable. But, if they are diagnosed with myeloma, continue to ask anything that is of concern to you and the family member. You as a caregiver are as important as your family member as a patient.
Nancy in Phila
There have been some significant changes in what is considered to be the benchmark for starting treatment in people with smoldering multiple myeloma in the last few months. A local hematologist / oncologist who does not specialize in treating people with myeloma may not be aware of the changes. Also, a local oncologist may not be dealing with a lab that does the genetic testing of the materials from the bone marrow biopsy. These results are driving when and what to use for treatment more and more these days, as the researchers are identifying who is in the high risk category of myeloma.
Both MultiBilly and Melanie have highlighted the real importance of having a myeloma specialist on your husband's treatment team. Because of my location, 1 mile from a major myeloma research center, I see a specialist as a primary oncologist. My anxiety level decreased exponentially when I saw him for the first time, because he spent time explaining the disease, outlining possible treatments when, and if, I progressed to active myeloma, and assured me that he would be keeping a close eye on my condition, not just my lab values.
This relationship has continued over the 7 years since diagnosis. I know that I can ask him anything and talk with him about research and that he will take the time to converse with me about all things myeloma.
I hope that your family member is diagnosed with something that is much less serious and curable. But, if they are diagnosed with myeloma, continue to ask anything that is of concern to you and the family member. You as a caregiver are as important as your family member as a patient.
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: Multiple myeloma specialist vs hematologist / oncologist
Thank you to all who replied with such informative, first-hand knowledge.
They are going next Thursday to the local hematologist / oncologist in New Orleans who was recommended to them, and I will try my hardest to persuade them to go take all of their labs, results, etc from that doctor to a specialist elsewhere. I live in NYC and I know Sloan Kettering has a great program, along with many others close to Louisiana.
By the way, their blood test came back today as follows (still waiting on 24 hr urinalysis)
Calcium 8.3 mg/dl
Hgb 9.6 gm/dl
Creatinine 1.44 mg/dl
Again, thanks to all for the advice!
They are going next Thursday to the local hematologist / oncologist in New Orleans who was recommended to them, and I will try my hardest to persuade them to go take all of their labs, results, etc from that doctor to a specialist elsewhere. I live in NYC and I know Sloan Kettering has a great program, along with many others close to Louisiana.
By the way, their blood test came back today as follows (still waiting on 24 hr urinalysis)
Calcium 8.3 mg/dl
Hgb 9.6 gm/dl
Creatinine 1.44 mg/dl
Again, thanks to all for the advice!
Re: Multiple myeloma specialist vs hematologist / oncologist
In my experience, please seek out a multiple myeloma specialist.
When my 87 year old mother was diagnosed with multiple myeloma, the hospital oncologist who conducted the bone marrow biopsy told us to come back for a office visit in 3 weeks. If we had followed that advice, my mother would be dead now (no exaggeration).
Its my understanding that, because multiple myeloma is not that common compared to other cancers, a typical oncologist will not have the same volume of experience. My mother is receiving treatment at a local cancer center that has 4 multiple myeloma doctors. They've seen hundreds of cases.
When my 87 year old mother was diagnosed with multiple myeloma, the hospital oncologist who conducted the bone marrow biopsy told us to come back for a office visit in 3 weeks. If we had followed that advice, my mother would be dead now (no exaggeration).
Its my understanding that, because multiple myeloma is not that common compared to other cancers, a typical oncologist will not have the same volume of experience. My mother is receiving treatment at a local cancer center that has 4 multiple myeloma doctors. They've seen hundreds of cases.
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lindahyemoog - Name: Linda
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 87
Re: Multiple myeloma specialist vs hematologist / oncologist
Many people live in small cities where there may not be a myeloma specialist. However, the local oncologist can / should help you locate a specialist. That may cause the patient to travel and spend a few days getting the workup and treatment protocol.
If the treatment protocol is chemotherapy, as opposed to a stem cell transplant, the local oncologist can oversee the administration of the treatment. The specialist and the local oncologist work together. So your relative can avoid travel just to have the chemo administered. Blood tests can also be done locally. So it's key that the myeloma specialist has a working relationship with the local oncologist.
If a stem cell transpant is required, that should be done at facility that does them routinely. Once it is completed, the maintenance can be administered by the local oncologist.
Ron
If the treatment protocol is chemotherapy, as opposed to a stem cell transplant, the local oncologist can oversee the administration of the treatment. The specialist and the local oncologist work together. So your relative can avoid travel just to have the chemo administered. Blood tests can also be done locally. So it's key that the myeloma specialist has a working relationship with the local oncologist.
If a stem cell transpant is required, that should be done at facility that does them routinely. Once it is completed, the maintenance can be administered by the local oncologist.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
7 posts
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