Does anyone know if there are treatment options that do not require steroids?
Since my diagnosis last March, my oncologist has tried Revlimid with prednisone and Velcade with prednisone. Neither stopped my progressions. He used prednisone rather than dex because he felt it was gentler.
Now I have started Kyprolis (carfilzomib) with dex.
My blood sugar is spiking as is my blood pressure (I have type 2 diabetes and heart disease), I have insomnia, severe mood problems, and I am worried about bodily distortion due to edema and fat redistribution. There has already been a deterioration in my appearance that is helping turn me into a recluse.
So I wonder if anyone has had experience with therapies that do not include steroids? Unfortunately, I am not a candidate for a stem cell procedure. I have the kappa light chain variety, and my biopsy results were not good – 90% myeloma cells. Amazingly, my kidney function is normal. Major symptoms are anemia and a lot of bone pain from many lytic lesions. I need transfusions to keep my hemoglobin at a safe level, and I am also getting monthly Zometa and immunoglobulin infusions.
My oncologist was surprised by the lack of response to Revlimid and Velcade. I did get a second opinion from a recognized myeloma center, and they basically had agreed with my oncologist's Velcade strategy, which has failed.
Just to complete the picture, FISH shows the 13q deletion, along with the lgH translocation – t(11:14). My latest light chain readings are kappa free light chains - 235 mg/dL, and a kappa/lambda FLC ratio of 296.
Thanks, everyone.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Mr. Potatohead,
Had you tried Velcade and Revlimid together with prednisone, or only Revlimid and Velcade with steroids separately?
You might want to see these articles:
"Thalidomide-Velcade Combination Without Steroids Is Effective For Newly Diagnosed Multiple Myeloma Patients," The Myeloma Beacon, Jan 28, 2011
"Steroid-Free Three-Drug Combination Treatment May Be Effective In Multiple Myeloma," The Myeloma Beacon, July 6, 2011
Both of these studies were done in Britain in 2011, so I'm guessing that is why they used Thalidomide instead of Revlimid at the time? (Revlimid wasn't approved for use in previously treated multiple myeloma patients until 2-3 years ago...it just recently got approved in Europe for newly diagnosed patients).
It might be worth discussing a Revlimid/Velcade cocktail without prednisone (assuming you had not tried the Velcade/Relimid combo before) or the Velcade/Doxil/Revlimid cocktail with your doc. Another option might be for your doc to dramatically dial down the steroid dose when creating the cocktail mixes.
You don't hear that much about Doxil these days, but that is a drug that my specialist still uses in his practice when creating some of his various cocktails.
Had you tried Velcade and Revlimid together with prednisone, or only Revlimid and Velcade with steroids separately?
You might want to see these articles:
"Thalidomide-Velcade Combination Without Steroids Is Effective For Newly Diagnosed Multiple Myeloma Patients," The Myeloma Beacon, Jan 28, 2011
"Steroid-Free Three-Drug Combination Treatment May Be Effective In Multiple Myeloma," The Myeloma Beacon, July 6, 2011
Both of these studies were done in Britain in 2011, so I'm guessing that is why they used Thalidomide instead of Revlimid at the time? (Revlimid wasn't approved for use in previously treated multiple myeloma patients until 2-3 years ago...it just recently got approved in Europe for newly diagnosed patients).
It might be worth discussing a Revlimid/Velcade cocktail without prednisone (assuming you had not tried the Velcade/Relimid combo before) or the Velcade/Doxil/Revlimid cocktail with your doc. Another option might be for your doc to dramatically dial down the steroid dose when creating the cocktail mixes.
You don't hear that much about Doxil these days, but that is a drug that my specialist still uses in his practice when creating some of his various cocktails.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Thank you so much, Multibilly, for those references. To answer your question, I never took the Revlimid and Velcade together. It was Revlimid plus prednisone, and when that failed, Velcade plus prednisone. So your suggestions are definitely worth a look.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Yeah, these novel agents are peculiar. Even with corticosteroids, these novel agents sometimes don't work when taken separately. But when combined, they often have synergistic effects and allow the patient to get a lot more mileage out of their drugs before graduating to the next generation or class of drugs.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi MrPotatohead,
Multibilly has passed along some great advice, as usual. I think the option of combining Revlimid and Velcade, with or without prednisone, seems like a logical one to pursue first.
Almost all myeloma drugs are active against the disease without combining them with steroids like dex or prednisone. It's just that, combined with steroids, response rates seem to be higher.
The one thing that I recall from reading some studies, however, is that Revlimid doesn't necessarily benefit as much from layering on prednisone as, for example, Velcade does. I believe there is an Italian study that compared melphalan + prednisone (MP) to MP + Revlimid (MPR) in newly diagnosed, transplant-ineligible patients, and I'm not sure the MPR arm of the trial did any better.
(It may have been more complicated than that. Revlimid maintenance also may have been involved in the trial. But my takeaway was that Revlimid didn't seem to "mix" well with either prednisone and/or melphalan.)
Which brings me to something Multibilly also alluded to. It seems to me at some point that you should be considering "alkylating" agents such as melphalan, cyclophosphamide, and doxorubicin (which is the active agent in Doxil). Velcade, melphalan, and prednisone (VMP) was a standard treatment for many years in many parts of the world, and "CyBorD" (Velcade, cyclophosphamide, and dex) is very common now both in the U.S. and overseas.
These drugs really should be on your radar unless, for example, your heart issues preclude your being treated with them. Personally, I would think you would want to try them before moving on to newer generation drugs such as Kyprolis, Pomalyst, and eventually elotuzumab and daratumumab, if and when they are approved.
Good luck!
Multibilly has passed along some great advice, as usual. I think the option of combining Revlimid and Velcade, with or without prednisone, seems like a logical one to pursue first.
Almost all myeloma drugs are active against the disease without combining them with steroids like dex or prednisone. It's just that, combined with steroids, response rates seem to be higher.
The one thing that I recall from reading some studies, however, is that Revlimid doesn't necessarily benefit as much from layering on prednisone as, for example, Velcade does. I believe there is an Italian study that compared melphalan + prednisone (MP) to MP + Revlimid (MPR) in newly diagnosed, transplant-ineligible patients, and I'm not sure the MPR arm of the trial did any better.
(It may have been more complicated than that. Revlimid maintenance also may have been involved in the trial. But my takeaway was that Revlimid didn't seem to "mix" well with either prednisone and/or melphalan.)
Which brings me to something Multibilly also alluded to. It seems to me at some point that you should be considering "alkylating" agents such as melphalan, cyclophosphamide, and doxorubicin (which is the active agent in Doxil). Velcade, melphalan, and prednisone (VMP) was a standard treatment for many years in many parts of the world, and "CyBorD" (Velcade, cyclophosphamide, and dex) is very common now both in the U.S. and overseas.
These drugs really should be on your radar unless, for example, your heart issues preclude your being treated with them. Personally, I would think you would want to try them before moving on to newer generation drugs such as Kyprolis, Pomalyst, and eventually elotuzumab and daratumumab, if and when they are approved.
Good luck!
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Jonah
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Mr. Potatohead,
BTW, Klaatu, barada, nikto!
Just to share my experience: When I was an inpatient after first being diagnosed, I was given Velcade and dex (VD). My insurance company would not approve Revlimid while I was an inpatient.
My response to the VD duo was not very good. After discharge, I added Revlimid and curcumin. My numbers went way down, likely due mostly to the RVD combo. My dex dose was 2 mg daily with 40 mg every Friday. Revlimid was 25 mg for 21 days with 7 days off. I don't remember the Velcade dose. My curcumin dose was 8 grams per day of Drs Best divided.
All my Best to you! BN
BTW, Klaatu, barada, nikto!
Just to share my experience: When I was an inpatient after first being diagnosed, I was given Velcade and dex (VD). My insurance company would not approve Revlimid while I was an inpatient.
My response to the VD duo was not very good. After discharge, I added Revlimid and curcumin. My numbers went way down, likely due mostly to the RVD combo. My dex dose was 2 mg daily with 40 mg every Friday. Revlimid was 25 mg for 21 days with 7 days off. I don't remember the Velcade dose. My curcumin dose was 8 grams per day of Drs Best divided.
All my Best to you! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
MrPotatohead,
From my experience and reading the Beacon over the last 4 years, I have learned that Revlimid and Velcade and many other drugs used to treat myeloma are not just a little bit more effective when used with dexamethasone, but a lot more effective. I have read a myeloma specialist say that often dexamethasone by itself is more effective than Revlimid as a single agent.
I too find dexamethasone one of the hardest drugs for me to live with. I too have had the body weight and fat distributions that are not pleasant. But, given the situation you are in, if it were me, I would seriously consider the body appearance issues to be a minor problem considering your overall health status with Velcade and Revlimid not being able to stop our progression. If you can find a treatment that can get you in remission and you can get off the dexamethasone, you should recover from the dexamethasone effects.
Not trying to lecture you what to do, but just trying to make it clear that the reason dexamethasone is so widely used in myeloma treatment, besides being cheap, is it more often than not it really works well and gets results, at least for a while (as we know, in the long term there is still not a cure).
Best wishes to you and I hope you can find something that can get your disease progression under control.
Eric
From my experience and reading the Beacon over the last 4 years, I have learned that Revlimid and Velcade and many other drugs used to treat myeloma are not just a little bit more effective when used with dexamethasone, but a lot more effective. I have read a myeloma specialist say that often dexamethasone by itself is more effective than Revlimid as a single agent.
I too find dexamethasone one of the hardest drugs for me to live with. I too have had the body weight and fat distributions that are not pleasant. But, given the situation you are in, if it were me, I would seriously consider the body appearance issues to be a minor problem considering your overall health status with Velcade and Revlimid not being able to stop our progression. If you can find a treatment that can get you in remission and you can get off the dexamethasone, you should recover from the dexamethasone effects.
Not trying to lecture you what to do, but just trying to make it clear that the reason dexamethasone is so widely used in myeloma treatment, besides being cheap, is it more often than not it really works well and gets results, at least for a while (as we know, in the long term there is still not a cure).
Best wishes to you and I hope you can find something that can get your disease progression under control.
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Jonah
Thanks for the tip on the alkylating agents. I will definitely talk to my doctors about that. No one on my treatment team has brought that up before.
Your comments on prednisone and Revlimid are interesting as well. One thing I did not mention is that after my first cycle on Revlimid (and the combo then was just prednisone and Revlimid), my alpha chains went down, but then as I entered the second cycle, they started up again like gangbusters. Very discouraging. At that point, my oncologist stopped the Revlimid and we started on Velcade and prednisone. No dice, unfortunately.
This multiple myeloma battle is a confusing one. Maybe my body is producing some myeloma cells that are sensitive to Revlimid and that's why I got the initial positive response. But once that happened, whatever the cancer process is "decided" to switch to a Revlimid-resistant clone.
Thanks again for the info and best regards,
Rob
Thanks for the tip on the alkylating agents. I will definitely talk to my doctors about that. No one on my treatment team has brought that up before.
Your comments on prednisone and Revlimid are interesting as well. One thing I did not mention is that after my first cycle on Revlimid (and the combo then was just prednisone and Revlimid), my alpha chains went down, but then as I entered the second cycle, they started up again like gangbusters. Very discouraging. At that point, my oncologist stopped the Revlimid and we started on Velcade and prednisone. No dice, unfortunately.
This multiple myeloma battle is a confusing one. Maybe my body is producing some myeloma cells that are sensitive to Revlimid and that's why I got the initial positive response. But once that happened, whatever the cancer process is "decided" to switch to a Revlimid-resistant clone.
Thanks again for the info and best regards,
Rob
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
Hi Bar-none
Thanks for sharing your experience and dosages. Made me feel a lot better. Seems that Multibilly's point is being reinforced on the synergetic aspect of combos. Which makes me wonder about why my oncologist is doing the current one-agent-at a time approach. Bears a discussion with him.
What I really need is Gort's destructo-vision weapon.
Best regards,
Rob
Thanks for sharing your experience and dosages. Made me feel a lot better. Seems that Multibilly's point is being reinforced on the synergetic aspect of combos. Which makes me wonder about why my oncologist is doing the current one-agent-at a time approach. Bears a discussion with him.
What I really need is Gort's destructo-vision weapon.
Best regards,
Rob
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Treatments w/o steroids, refractory to Revlimid, Velcade
MrP -
Glad to see that you've gotten some additional advice. I hope you and your doctors are able to find something that works for you.
I wanted to correct a mistake I made in my earlier posting. I said that doxorubicin is an alkylating agent. It's not. My bad. Like the alkylating agents, doxorubicin is considered a traditional chemotherapy agent, but it's not in the same class of drugs as melphalan and cyclophosphamide. The only other alkylating agent that is used sometimes to treat myeloma is bendamustine (Treanda).
Because doxorubicin is in a separate class of drugs from melphalan and cyclophosphamide, there is all the more reason to keep it in mind as a potential treatment.
Glad to see that you've gotten some additional advice. I hope you and your doctors are able to find something that works for you.
I wanted to correct a mistake I made in my earlier posting. I said that doxorubicin is an alkylating agent. It's not. My bad. Like the alkylating agents, doxorubicin is considered a traditional chemotherapy agent, but it's not in the same class of drugs as melphalan and cyclophosphamide. The only other alkylating agent that is used sometimes to treat myeloma is bendamustine (Treanda).
Because doxorubicin is in a separate class of drugs from melphalan and cyclophosphamide, there is all the more reason to keep it in mind as a potential treatment.
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Jonah
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