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).
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.
Forums
Re: Getting two very different perspectives
Hi Suzierose. 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 Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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:
https://myelomabeacon.org/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
https://myelomabeacon.org/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."
https://myelomabeacon.org/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:
https://myelomabeacon.org/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:
https://myelomabeacon.org/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
https://myelomabeacon.org/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."
https://myelomabeacon.org/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:
https://myelomabeacon.org/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
Re: Getting two very different perspectives
I am 68 years old with multiple myeloma and eight months out from stem cell transplant. Started carfilzimib and three weeks out from having only three doses. severely anemic. Boy do I get tired easily. Have others seen severe anemia after this medication at low doses.
I am very interested in those that are seeking alternative cures. I haven't really run across anything that would hold out much hope for a cure either is the alternative or the western lines of medicine. I also understand the quality-of-life issues as I've always been so active and to be tired and to have neuropathy really influences my life.
Glad you are all here.
I am very interested in those that are seeking alternative cures. I haven't really run across anything that would hold out much hope for a cure either is the alternative or the western lines of medicine. I also understand the quality-of-life issues as I've always been so active and to be tired and to have neuropathy really influences my life.
Glad you are all here.
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Farrow108
Re: Getting two very different perspectives
Dear Farrow108,
Anemia is a potential side effect of carfilzomib but usually is not a prominent problem. The platelets are usually affected to a greater degree than the hemoglobin. I suspect that you may be having a more exaggerated anemia from treatment due to the fact that you were transplanted only 8 months ago. As such, your bone marrow reserves may not be as robust. Additionally, the myeloma is likely contributing to the anemia early in the treatment course. Your doctor will need to monitor your response to treatment closely.
Dear Art,
I am glad to hear that you went to the NCI and met Dr. Landgren. You are in great hands. Keep us updated as to your progress.
Dear Suzierose,
Great explanation of the chromosome abnormalities in myeloma. I am going to have to recruit you to our clinic to give the low-down on low- vs. high-risk myeloma to our patients!
All the best to everyone,
Pete V.
Anemia is a potential side effect of carfilzomib but usually is not a prominent problem. The platelets are usually affected to a greater degree than the hemoglobin. I suspect that you may be having a more exaggerated anemia from treatment due to the fact that you were transplanted only 8 months ago. As such, your bone marrow reserves may not be as robust. Additionally, the myeloma is likely contributing to the anemia early in the treatment course. Your doctor will need to monitor your response to treatment closely.
Dear Art,
I am glad to hear that you went to the NCI and met Dr. Landgren. You are in great hands. Keep us updated as to your progress.
Dear Suzierose,
Great explanation of the chromosome abnormalities in myeloma. I am going to have to recruit you to our clinic to give the low-down on low- vs. high-risk myeloma to our patients!
All the best to everyone,
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
29 posts
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