We took a break from the Beacon's weekly polls over the December holidays ... but we're back!
This week's poll continues the series we started with the last question we asked. The series focuses on treatments myeloma patients are receiving now, or have received in the past.
The previous poll question was about the first novel agent for myeloma, thalidomide.
This week's question is about the second novel agent for myeloma, Velcade (bortezomib).
As usual, there are a few clarifications to the poll question:
First, this question is only for readers who have active multiple myeloma (that is, not smoldering myeloma, and not MGUS).
Second, if you are a caregiver or family member of someone who has active myeloma, feel free to answer on their behalf
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers (whether for information or just entertainment purposes).
For the results of the other polls in this series about treatment with the other novel agents, see the links below:
thalidomide (Thalomid)
https://myelomabeacon.org/forum/weekly-poll-treatment-with-thalidomide-active-myeloma-t768.html
Revlimid (lenalidomide)
https://myelomabeacon.org/forum/weekly-poll-velcade-dosing-schedule-t1671.html
This series was also conducted again in 2013. For the results of those polls, see the links below.
Velcade
https://myelomabeacon.org/forum/weekly-poll-treatment-with-velcade-active-myeloma-2013-t1672.html
Kyprolis (carfilzomib)
https://myelomabeacon.org/forum/weekly-poll-treatment-with-kyprolis-active-myeloma-t1649.html
Forums
6 posts
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Re: Weekly Poll - Treatment With Velcade (Active Myeloma)
I'm a bit surprised by these poll results. Can it really be that just 12 percent of the patients visiting a site like this one have NOT been treated with Velcade at some point?
I would have thought the percentage would be higher ... maybe closer to 20 percent.
I would have thought the percentage would be higher ... maybe closer to 20 percent.
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TerryH
Re: Weekly Poll - Treatment With Velcade (Active Myeloma)
Hi TerryH
I thought the same initially then I recalled that the majority of folks who visit this forum are not the newly diagnosed. The majority are relapsed/refractory and far more likely to have been treated with Velcade.
Even if you stop and think about it, of the newly diagnosed who do visit the Beacon, unless they are savvy and not emotionally overwhelmed by the dignoses are going to take the oncologists recommendation and start therapy on Velcade...after all that IS the last most effective FDA approved agent. Recall, carfilzomib is still in clinical trial use on, having not received FDA approval, the office based oncologist does not have access to it.
The last possibility of course, that would account for the number, is that the newly diagnosed have yet to complete the survey.
I thought the same initially then I recalled that the majority of folks who visit this forum are not the newly diagnosed. The majority are relapsed/refractory and far more likely to have been treated with Velcade.
Even if you stop and think about it, of the newly diagnosed who do visit the Beacon, unless they are savvy and not emotionally overwhelmed by the dignoses are going to take the oncologists recommendation and start therapy on Velcade...after all that IS the last most effective FDA approved agent. Recall, carfilzomib is still in clinical trial use on, having not received FDA approval, the office based oncologist does not have access to it.
The last possibility of course, that would account for the number, is that the newly diagnosed have yet to complete the survey.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Weekly Poll - Treatment With Velcade (Active Myeloma)
I think this exchange has perhaps highlighted another question the Beacon could ask -- how my lines of therapy have you had so far? Yes, I know there's always the problem with defining what a "line of therapy" is. I am sure though that there are standard definitions.
I guess the reason why I think that would be interesting is because my assumption was that most of the people here have had some kind of induction therapy, maybe a stem cell transplant, and then maybe some other treatment regimen. I was assuming, though, that a lot of people here have had just induction therapy and then that's it.
For those patients, I would have thought many would have received only Revlimid or, if you are outside the US, thalidomide, as induction along with dex, and that was it.
I know however that there are many docs who feel that Velcade should always be included in the upfront treatment regimen. There are others who feel that if you are a low risk patient that treatment with Rev up front is fine.
So, yeah, these results are interesting and maybe they are not really the result of any bias. They just reflect the real fact that a lot of myeloma patients these days are being treated with Velcade at some point.
I guess the reason why I think that would be interesting is because my assumption was that most of the people here have had some kind of induction therapy, maybe a stem cell transplant, and then maybe some other treatment regimen. I was assuming, though, that a lot of people here have had just induction therapy and then that's it.
For those patients, I would have thought many would have received only Revlimid or, if you are outside the US, thalidomide, as induction along with dex, and that was it.
I know however that there are many docs who feel that Velcade should always be included in the upfront treatment regimen. There are others who feel that if you are a low risk patient that treatment with Rev up front is fine.
So, yeah, these results are interesting and maybe they are not really the result of any bias. They just reflect the real fact that a lot of myeloma patients these days are being treated with Velcade at some point.
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TerryH
Re: Weekly Poll - Treatment With Velcade (Active Myeloma)
I was diagnosed multiple myeloma early December 2010 and started a Thalidomide cure without sucess, the haemoglobine below 5 and no change of the important blood-figures. Then on February 11th. 2011 I started on Velcade and Dex, having 3x4 + 2 doses ending May the 6th. On May the 18th I was in CR, only treated with Aredia monthly ending with the 10th. dose mid-October 2011 and this week I will see the Haematologic ward again after 3 months. I hope for good figures and is a very great admirer of those who invented Velcade.
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Soren, DK
Re: Weekly Poll - Treatment With Velcade (Active Myeloma)
--just to learn that I was in ( I hope ) 1. relapse 
We try Vel.Dex. with Cy. this time!
But Spring is around rhe corner so: cheer up!
We try Vel.Dex. with Cy. this time!
But Spring is around rhe corner so: cheer up!
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Soren,DK
6 posts
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