Hi Ben!
It's really hard for me to narrow it to 2 docs.
I think a lot depends on where you are geographically, who you can get to and the nature of your multiple myeloma(conventional vs high risk). Even so, I pretty much hold in high esteem the guys on this review committee, and they are from all regions of the nation:
http://themmrc.org/about_project_review.php#siegel
All of those docs have significant expertise and are on top of the most cutting edge therapy.
My personal choices are driven by the nature of my disease being ultra-high risk; of the 6 negative chromosomal translocations I have 4 of them. Ergo, my preference is for a clinician who prefers most effective therapy vs most aggressive therapy as to me QOL is more important when dealing with an incurable disease where pretty much the majority of clinical evidence says the prognosis is dismal. A younger person with conventional multiple myeloma might have a wholly different perspective.
Given those caveats
Landgren tops my list along with Siegal @Hackensack and I also like Rajkumar@Mayo
Forums
Re: Getting two very different perspectives
Last edited by suzierose on Fri Jan 13, 2012 10:06 am, edited 1 time in total.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Hi Suzierose...I see there is one Canadian on the review committee, Dr. Suzanne Trudel, from Toronto. We were fortunate enough to have her give us a talk last fall, as part of an information day. Reading in as I do, not in the same health care system that you have in the US, is sometimes a challenge. We need to sift out what would apply to us here, which is mostly the medical information, not the clinics to apply to for health care. Thanks for your thorough research on lots of topics regarding multiple myeloma. The whole Beacon has been of great help to my understanding of the disease.....one cannot afford to be complacent on this topic, that's for sure!!
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Nancy S - Name: Nancy
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: Getting two very different perspectives
Hi Nancy!
I was impressed to see the physician from Toronto too!! Glad that information was useful to you.
I also think I would be remiss not to mention that while the committee is made up of only one physician from each member institution of the MMRC...one of our Beacon Advisors, Dr Shain is also at Moffitt.
Point of fact, all of the Advisors here at the Beacon would /should be included in a list of top myeloma experts.
I was impressed to see the physician from Toronto too!! Glad that information was useful to you.
I also think I would be remiss not to mention that while the committee is made up of only one physician from each member institution of the MMRC...one of our Beacon Advisors, Dr Shain is also at Moffitt.
Point of fact, all of the Advisors here at the Beacon would /should be included in a list of top myeloma experts.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Hi, suzierose:
Thanks for your response. Dr. Siegel of Hackensack University is close to where we live. He should be a valuable source of medical advices when the time comes for us to sort out my wife's treatment options. Many thanks again!
Ben
Thanks for your response. Dr. Siegel of Hackensack University is close to where we live. He should be a valuable source of medical advices when the time comes for us to sort out my wife's treatment options. Many thanks again!
Ben
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Ben S.
Re: Getting two very different perspectives
Hi Art!
I do understand about trying to get a grasp on the cytogenetics and how confusing it can be when trying to determine just what does this mean in terms of my future outcomes and why is it meaningful.
You asked about deletion of chromosome 13. It is unclear to me what is unclear to you by the way your question is posed, but I will give it a shot, and provide some links that may also be helpful. I am assuming you want to know how does the deletion impact the disease and what is the prognosis with it?....
Our chromosomes regulate genes and when they are translocated or deleted this results in a dysregulation of the genes they control. That dysregulation can impact the pathogenesis of the disease i.e. it can make it more aggressive and/or increase the tumor burden thereby impacting prognosis. Not all chromosome deletions/translocations are negative prognosticators, some like 3,5,7,11 are positive in multiple myeloma.
Chromosomal changes are now being used to stratify multiple myeloma risk in newly diagnosed patients and helps to determine which therapies are likely to work and which can be deleterious. Some of the new agents overcome chromosomal risk in multiple myeloma patients that previously was seen as negative. Patients with Deletion 13 is one of those where we are now seeing far less negative prognosis as the new agents are effective in the patient population with that chromosome deletion. IOW's they are having CR's, and PFS comparable to those without the deletion.
Here's what they were saying about deletion of chromosome 13 in 2009:
http://www.myelomabeacon.com/news/2009/03/08/current-information-on-risk-statification-in-multiple-myeloma/
However Lonial in this correspondence differentiated risk with deletion 13:
"risk may matter less. Reece et al evaluate the impact of risk in a relapsed myeloma trial and define high risk as the presence of deletion 13, t(4:14), or del 17p using FISH data. But are all these equally poor? Deletion of 13q was found to be significant as a prognostic marker when isolated by metaphase cytogenetics,7 but when present as the sole FISH abnormality, it was not noted to have an impact on survival.8 Similarly, t(4:14) patients with this abnormality and a low β2M were not noted to have a significant survival decrement in an IFM analysis.9 In the current report, the median β2M was 3.3, suggesting that half of the 28 patients in the analysis did not have poor-risk disease. This leaves the del 17p group, who generally do have poor outcomes regardless of the choice of therapy"
http://bloodjournal.hematologylibrary.org/content/114/3/496.full?maxtosh
http://www.myelomabeacon.com/news/2009/07/27/dr-sagar-lonial-provides-insight-into-high-risk-myeloma/
By August 2010, trials are showing that bortezomib while not impacting chromosome 1 changes is effective in patients with chromosomal deletion 13:
"previous studies have found that relapsed or refractory myeloma patients with the chromosomal abnormalities del(13q) (a deletion in a region of chromosome 13) or t(4;14) (a translocation between chromosomes 4 and 14) respond as well to Velcade (bortezomib) treatment as patients without those chromosomal abnormalities."
http://www.myelomabeacon.com/news/2010/08/13/velcade-may-not-be-as-effective-in-relapsed-and-refractory-multiple-myeloma-patients-with-duplications-in-chromosome-1/
And by the end of 2010, Rajkumar is not even mentioning chromosome deletion 13 in this article as the new novel agents have been therapeutically effective in patients with deletion 13:
http://www.myelomabeacon.com/news/2010/12/03/risk-adapted-therapy-for-multiple-myeloma-by-dr-vincent-rajkumar/
So what we have is an evolving picture of risk and high risk in multiple myeloma. The disease has not changed but the new therapies change whether one is considered high risk...effective drugs means patients with certain cytogenetic profiles will respond to therapy as well as those without those chromosomal changes.
Overall, chromosome deletion 13 seems to no longer be the negative prognosticator it once was believed to be prior to the new therapies.
I hope this helps Art...feel free to ask for more if I missed where you were wanted to focus.
I do understand about trying to get a grasp on the cytogenetics and how confusing it can be when trying to determine just what does this mean in terms of my future outcomes and why is it meaningful.
You asked about deletion of chromosome 13. It is unclear to me what is unclear to you by the way your question is posed, but I will give it a shot, and provide some links that may also be helpful. I am assuming you want to know how does the deletion impact the disease and what is the prognosis with it?....
Our chromosomes regulate genes and when they are translocated or deleted this results in a dysregulation of the genes they control. That dysregulation can impact the pathogenesis of the disease i.e. it can make it more aggressive and/or increase the tumor burden thereby impacting prognosis. Not all chromosome deletions/translocations are negative prognosticators, some like 3,5,7,11 are positive in multiple myeloma.
Chromosomal changes are now being used to stratify multiple myeloma risk in newly diagnosed patients and helps to determine which therapies are likely to work and which can be deleterious. Some of the new agents overcome chromosomal risk in multiple myeloma patients that previously was seen as negative. Patients with Deletion 13 is one of those where we are now seeing far less negative prognosis as the new agents are effective in the patient population with that chromosome deletion. IOW's they are having CR's, and PFS comparable to those without the deletion.
Here's what they were saying about deletion of chromosome 13 in 2009:
http://www.myelomabeacon.com/news/2009/03/08/current-information-on-risk-statification-in-multiple-myeloma/
However Lonial in this correspondence differentiated risk with deletion 13:
"risk may matter less. Reece et al evaluate the impact of risk in a relapsed myeloma trial and define high risk as the presence of deletion 13, t(4:14), or del 17p using FISH data. But are all these equally poor? Deletion of 13q was found to be significant as a prognostic marker when isolated by metaphase cytogenetics,7 but when present as the sole FISH abnormality, it was not noted to have an impact on survival.8 Similarly, t(4:14) patients with this abnormality and a low β2M were not noted to have a significant survival decrement in an IFM analysis.9 In the current report, the median β2M was 3.3, suggesting that half of the 28 patients in the analysis did not have poor-risk disease. This leaves the del 17p group, who generally do have poor outcomes regardless of the choice of therapy"
http://bloodjournal.hematologylibrary.org/content/114/3/496.full?maxtosh
http://www.myelomabeacon.com/news/2009/07/27/dr-sagar-lonial-provides-insight-into-high-risk-myeloma/
By August 2010, trials are showing that bortezomib while not impacting chromosome 1 changes is effective in patients with chromosomal deletion 13:
"previous studies have found that relapsed or refractory myeloma patients with the chromosomal abnormalities del(13q) (a deletion in a region of chromosome 13) or t(4;14) (a translocation between chromosomes 4 and 14) respond as well to Velcade (bortezomib) treatment as patients without those chromosomal abnormalities."
http://www.myelomabeacon.com/news/2010/08/13/velcade-may-not-be-as-effective-in-relapsed-and-refractory-multiple-myeloma-patients-with-duplications-in-chromosome-1/
And by the end of 2010, Rajkumar is not even mentioning chromosome deletion 13 in this article as the new novel agents have been therapeutically effective in patients with deletion 13:
http://www.myelomabeacon.com/news/2010/12/03/risk-adapted-therapy-for-multiple-myeloma-by-dr-vincent-rajkumar/
So what we have is an evolving picture of risk and high risk in multiple myeloma. The disease has not changed but the new therapies change whether one is considered high risk...effective drugs means patients with certain cytogenetic profiles will respond to therapy as well as those without those chromosomal changes.
Overall, chromosome deletion 13 seems to no longer be the negative prognosticator it once was believed to be prior to the new therapies.
I hope this helps Art...feel free to ask for more if I missed where you were wanted to focus.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Thank You suzierose. Very Helpful!
Art
Art
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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
I am under going treatment for multiple myeloma, i am 49 years young. I was stage 1 in 2010 did autologus transplant in may 2011, They tell me i am in remission. The first doctor in TN said i was stage 3, my second opinion from ctca was stage 1 and they are treating me. Dec 28th 2010 was when i was diagnoised. Jan 2011 i went to ctca. I have not looked back. But as I research and i do alot i am learning, I am on the virg of stopping chemo(maintenance dose) I am looking at alternate cures yes i said cure. I will continue to research, but the natual ways sem to make so much more since to me. my opinion.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: Getting two very different perspectives
Greg
Great to hear your position on all of this. We are starting to hear the word "cure" more and more. Any info you could give me on some of these alternatives would be great. I have met some wonderful people through the Beacon and I have 2 great Oncologists I am seeing.
I really wonder about all of these Drugs and obviously they come with side effects sometimes that seem to be worse than the disease they are treating. All I am saying is that there is soooo much money to be made from all of this! Kinda makes you wonder?? I have very mixed feelings about all of this.
God Bless you and I pray for you
Art
Great to hear your position on all of this. We are starting to hear the word "cure" more and more. Any info you could give me on some of these alternatives would be great. I have met some wonderful people through the Beacon and I have 2 great Oncologists I am seeing.
I really wonder about all of these Drugs and obviously they come with side effects sometimes that seem to be worse than the disease they are treating. All I am saying is that there is soooo much money to be made from all of this! Kinda makes you wonder?? I have very mixed feelings about all of this.
God Bless you and I pray for you
Art
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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
Went to see Dr Landgren this week. I was disappointed to see that my Hemoglobin slid to 11.4 from a previous 12.6. But that was Almost 8 weeks ago. So, walking in there I was sure I was SMM. But now leaving I am not so sure. They are not ruling it out though,As a matter of fact they allowed me to enroll in the SMM study. My A2 and LDH are good as are my Creatinine and Calcium. So he is considering my Anemia as a "soft" indicator. I am waiting for the rest of the tests to come back. The BMB and SPEP will tell more I guess. We finally told our children (10,12,14) and after the initial hysteria they are ok and asking questions. So it seems they are coping well. I know I feel like a weight has been lifted off my chest. I dont have to watch my every step and watch to see who is around when I talk on the phone or with my wife. I have to say the BMB was a piece of cake compared to the first. George used a drill which only makes sense to me. I was wondering why they stopped after 3 minutes and then they told me It was done. I could not believe it! All in all a Great experience at the NIH. Dr Landgren and his staff are Top Notch.Going to see my local Oncologist in a month so I guess time will tell. I am hoping my Hemoglobin goes up. They are doing studies at NIH with the new carfilzomib,Rev and Dex for newly diagnosed multiple myeloma and very soon for SMM. Something to think about. Good luck everyone and God Bless! Lots of praying while I was there for the couple of days by myself. It was a good chance to reflect.
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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
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