I have recently been diagnosed with multiple myeloma. I am 40 years old with three children (10,12,14). I have seen two specialists from two major medical centers in Chicago. I am awaiting some CT and MRI results to see if my multiple myeloma is smoldering or active.
I am confused as the two doctors have two very different opinions on how to proceed. The one has told me that if it is active he feels that it is a high risk form of multiple myeloma. The other is very convinced that we should wait and watch.
I feel great and have no symptoms. I have mild anemia. I have only had X-rays that show no signs of bone damage which is why I am having the CT and MRI. The first specialist was satisfied with just the X-rays. The second specialist feels that X-rays are not enough to determine whether it is smoldering or active.
They also disagree on what type of Marrow transplant I would benefit from. One says auto the other says allogeneic. One is obviously much more aggressive than the other. I’m so confused.
God bless all of you reading and posting.
Forums
Re: Getting two very different perspectives
Hi Art!!
I completely empathize with how confusing the whole process can be.
It sounds like you need a third opinion
The University of Chicago is a member of the Multiple Myeloma Research Foundation. consortium.
One of the leading multiple myeloma experts there is Dr. Andrzej Jakubowiak.
You might want to make an appointment for a consultation with him.
http://www.uchospitals.edu/physicians/andrzej-jakubowiak.html
I completely empathize with how confusing the whole process can be.
It sounds like you need a third opinion
The University of Chicago is a member of the Multiple Myeloma Research Foundation. consortium.
One of the leading multiple myeloma experts there is Dr. Andrzej Jakubowiak.
You might want to make an appointment for a consultation with him.
http://www.uchospitals.edu/physicians/andrzej-jakubowiak.html
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Hi Art, I agree with Suzierose and would recommend another perspective. I am a 49 year old guy diagnosed 8/10/11 with light chain only kappa restricted myeloma that was classified as smoldering 9/11 at the NIH by Dr. Landgren one of the world's leading authorities on myeloma and its precursor forms (MGUS, SMM). In fact, I am in his study of myeloma's progression. I am also concurrently monitored at UPenn near my home. I would suggest you contact the NIH and speak to Dr. Landgren or his staff and see if they will evaluate you. There is no cost and they reimburse for travel, etc. His perspective is an important one and he is one of the finest persons I have ever met. I know many of his patients would echo my remarks. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Getting two very different perspectives
Thank You Suzyrose and Terry.
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Getting two very different perspectives
Hi Art
I definitely agree with Terry regarding Dr.Landgren a NIH.Im currently in the smoldering study and very impressed with their knowledge and care.
Good luck!
John
I definitely agree with Terry regarding Dr.Landgren a NIH.Im currently in the smoldering study and very impressed with their knowledge and care.
Good luck!
John
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john - Name: John
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 11/2010
- Age at diagnosis: 55
Re: Getting two very different perspectives
News on smoldering myeloma:
Scientists at Dana-Farber Cancer Institute have created a "cocktail" of immune-stimulating peptides they believe could provoke the body's defenses to attack multiple myeloma in its early "smoldering" phase and slow or prevent the blood cancer.
http://www.dana-farber.org/Newsroom/News-Releases/peptide-cocktail-elicits-immune-response-to-multiple-myeloma.aspx#.Tu8bUk5ROo4.email
Scientists at Dana-Farber Cancer Institute have created a "cocktail" of immune-stimulating peptides they believe could provoke the body's defenses to attack multiple myeloma in its early "smoldering" phase and slow or prevent the blood cancer.
http://www.dana-farber.org/Newsroom/News-Releases/peptide-cocktail-elicits-immune-response-to-multiple-myeloma.aspx#.Tu8bUk5ROo4.email
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Dear Art,
Can you provide us more insight as to why the one physician feels that you may have a high risk form of myeloma, whereas the other does not? You state the anemia is mild -- what is the hemoglobin level? Is there a large burden of disease on the bone marrow biopsy? Are there any other features of your disease (high risk cytogenetics, high calcium level, kidney problems) that worry the one physician? Has the "M-spike" increased over the period of time that you have been diagnosed?
Let us know how the additional imaging studies turn out. Best of luck to you!
Pete V.
Can you provide us more insight as to why the one physician feels that you may have a high risk form of myeloma, whereas the other does not? You state the anemia is mild -- what is the hemoglobin level? Is there a large burden of disease on the bone marrow biopsy? Are there any other features of your disease (high risk cytogenetics, high calcium level, kidney problems) that worry the one physician? Has the "M-spike" increased over the period of time that you have been diagnosed?
Let us know how the additional imaging studies turn out. Best of luck to you!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Getting two very different perspectives
Dr. Voorhees
Thank you for your questions. My M spike is 2.4 and has remained constant since original tests in late November of 2011. My creatinine and calcium levels are normal and my kidney function is good. My most recent labs showed a hemoglobin level of 12.6 which is up from a previous 12.2. I have seen a hemoglobin level as low as 11.7 back in March of 2011.
The original reports of my biopsy were 30 to 40% plasma cells. A second review of slides from university pathologists shows 17 to 22% plasma cells. The second doctor I saw feels I am high risk due to the chromosome 13 deletion.( I don't fully understand the chromosome 13 deletion) He further went on to say that he would consider a tandem bone marrow transplant for me with one of my cells and one cell from a donor due to the high risk.
I went back to see original doctor this past Monday and explained to him what this second doctor had told me. My first doctor feels that the second doctor must not have realized that the chromosome 13 deletion was found by fish and that is why he feels it is high-risk. He told me that since it was found by fish and not by G band that it does not indicate high-risk but only moderate risk.
First doctor went on further to tell me that there is no way he would subject me to the risk of any type of transplant except an auto transplant. He also said that he does not feel I need further imaging results as they are only helpful in diagnosis which is not a question in my case. He has given me the option of treatment or waiting and watching as long as labs are stable.
He did discuss treatment plan with me which would be with Velcade (bortezomib) and dexamethasone twice a week for two weeks with a break of two weeks off for a period of two months and then down to once a week for a period of time with then the option of an auto transplant.
I am up much more comfortable with first doctor and not because he is less aggressive or telling me what I want to hear only because he gives me as much time as I need and seems very concerned for what is best for me instead of what he can do for me. He did make it very clear that they are more than capable of doing any type of transplant and that he does more allogeneic transplants than anything but only would do what is best for me.
The second doctor I saw was very brief with me and rushed me out of the exam room. He did not even physically examine me. I am sure he is a very good doctor, I just did not feel comfortable with him. Both of these doctors are from two major medical facilities in my area.
I would greatly appreciate any of your thoughts on this information.
Thank you very much
Thank you for your questions. My M spike is 2.4 and has remained constant since original tests in late November of 2011. My creatinine and calcium levels are normal and my kidney function is good. My most recent labs showed a hemoglobin level of 12.6 which is up from a previous 12.2. I have seen a hemoglobin level as low as 11.7 back in March of 2011.
The original reports of my biopsy were 30 to 40% plasma cells. A second review of slides from university pathologists shows 17 to 22% plasma cells. The second doctor I saw feels I am high risk due to the chromosome 13 deletion.( I don't fully understand the chromosome 13 deletion) He further went on to say that he would consider a tandem bone marrow transplant for me with one of my cells and one cell from a donor due to the high risk.
I went back to see original doctor this past Monday and explained to him what this second doctor had told me. My first doctor feels that the second doctor must not have realized that the chromosome 13 deletion was found by fish and that is why he feels it is high-risk. He told me that since it was found by fish and not by G band that it does not indicate high-risk but only moderate risk.
First doctor went on further to tell me that there is no way he would subject me to the risk of any type of transplant except an auto transplant. He also said that he does not feel I need further imaging results as they are only helpful in diagnosis which is not a question in my case. He has given me the option of treatment or waiting and watching as long as labs are stable.
He did discuss treatment plan with me which would be with Velcade (bortezomib) and dexamethasone twice a week for two weeks with a break of two weeks off for a period of two months and then down to once a week for a period of time with then the option of an auto transplant.
I am up much more comfortable with first doctor and not because he is less aggressive or telling me what I want to hear only because he gives me as much time as I need and seems very concerned for what is best for me instead of what he can do for me. He did make it very clear that they are more than capable of doing any type of transplant and that he does more allogeneic transplants than anything but only would do what is best for me.
The second doctor I saw was very brief with me and rushed me out of the exam room. He did not even physically examine me. I am sure he is a very good doctor, I just did not feel comfortable with him. Both of these doctors are from two major medical facilities in my area.
I would greatly appreciate any of your thoughts on this information.
Thank you very much
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Getting two very different perspectives
Art-
Welcome to the world of decision making about what treatment plan to choose. It can be very frustrating and in the end you have to do your research and then make the decision based on your gut feeling about what is the right one for you and your situation. I agree with the others about maybe getting one more opinion. How about going to Mayo since you are in the Midwest?
Bottom line is that you need to feel comfortable with the oncologist who you work with. For me, it is important to be able to talk with my oncologist, discuss treatment options, discuss research, discuss clinical trials and respond to any of my physical woes. It's a tall order, but it is available and important. So far, it sounds like the first doctor fills those shoes.
Good luck with your decisions and with your journey through Myeloma,
Nancy
Welcome to the world of decision making about what treatment plan to choose. It can be very frustrating and in the end you have to do your research and then make the decision based on your gut feeling about what is the right one for you and your situation. I agree with the others about maybe getting one more opinion. How about going to Mayo since you are in the Midwest?
Bottom line is that you need to feel comfortable with the oncologist who you work with. For me, it is important to be able to talk with my oncologist, discuss treatment options, discuss research, discuss clinical trials and respond to any of my physical woes. It's a tall order, but it is available and important. So far, it sounds like the first doctor fills those shoes.
Good luck with your decisions and with your journey through Myeloma,
Nancy
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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: Getting two very different perspectives
Dear Art,
I agree with your oncologist that the 13q deletion by FISH is not a high-risk lesion. Additionally, unless there is something I am missing, there are no obvious red flags based on what you are describing. If your oncologist feels that you have smoldering or asymptomatic myeloma, close observation is a perfectly reasonable approach for now. There are on-going studies looking at early intervention in patients with smoldering myeloma. For example, a study through the ECOG cooperative group is evaluating the role of lenalidomide (Revlimid) for smoldering myeloma at high risk of progressing to full blown symptomatic disease. This would be an attractive approach as well. Additional imaging could prove helpful, especially if you are having pain symptoms that are not well explained by your bone survey.
Best of luck to you and let us know how things go!
Pete V.
I agree with your oncologist that the 13q deletion by FISH is not a high-risk lesion. Additionally, unless there is something I am missing, there are no obvious red flags based on what you are describing. If your oncologist feels that you have smoldering or asymptomatic myeloma, close observation is a perfectly reasonable approach for now. There are on-going studies looking at early intervention in patients with smoldering myeloma. For example, a study through the ECOG cooperative group is evaluating the role of lenalidomide (Revlimid) for smoldering myeloma at high risk of progressing to full blown symptomatic disease. This would be an attractive approach as well. Additional imaging could prove helpful, especially if you are having pain symptoms that are not well explained by your bone survey.
Best of luck to you and let us know how things go!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
29 posts
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