Can you give any guidelines or suggestions of how to determine what might be best for my next line of treatment?
I was diagnosed in 2006 with kappa light chain myeloma at age 50. I have been through the following treatments:
thalidomide & dex - was not effective plus I had problems with bradycardia
Revlimid/Velcade/dex - one round dropped my numbers significantly
high-dose melphalan w/ auto stem cell transplant - minor response, numbers started climbing after only 4 months
Velcade/melphalan/dex - not effective
hyper C-VAD - not effective
Velcade/Revlimid/dex - again was very effective, but numbers started increasing after 7 months
Velcade/Revlimid/cytoxan - helped to stabilize numbers for several months. I am still on this treatment.
My numbers have been increasing and now my kappa light chains are over 3100 mg/L (were around 1800 until Dec.). My urine protein numbers are increasing as well. Otherwise I am feeling relatively well (except for fatigue and some back pain) and my blood counts are not bad - they go up and down with my rounds of Revlimid and cytoxan.
I'm looking at options with some of the new drugs but don't know how to determine which might be right for me. I live some distance from any of the major cancer centers but go to MD Anderson in Houston to consult with a specialist. Part of the problem is that many trials would require me to be away from home for an extended period of time and I'm not ready to make that commitment/sacrifice. My local oncology group is getting set up to participate in trials here but I'm not sure how much longer that will take. I see my local onc. next week.
I'm trying to research what's available but am not sure how to sort through the info to determine what might work and what is not likely to. I know it is impossible to have an answer for this but any insights would be helpful.
Thanks,
Janet
Forums
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jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Looking for new treatment
Hi Janet,
Wow! You've definitely been through a number of different treatments. I'm sorry to hear that you haven't had more success with them.
I'm going to throw out a few ideas based on reading that I've done here at the Beacon and a few other places on the Internet.
Obviously, one thing you'll want to consider is an allo transplant. It's possible you might even want to consider a second auto transplant, but your poor response to the first one suggest it might not be very helpful. Still, it could give you some extra time.
The fact that you're currently taking both Velcade and Revlimid means you are probably not as likely to respond to the new treatments carfilzomib (which is similar to Velcade) and pomalidomide (which is similar to Revlimid). As you probably know, both of these new treatments are not yet officially approved by the FDA. The only way you will be able to take them will be through a clinical trial.
Two other options that are more different than Velcade and Revlimid are elotuzumab and panobinostat. Again, they are not yet approved by the FDA, so you only will be able to take them as part of a clinical trial. My impression from some of what I've read here is that expectations are higher for elotuzumab than for panobinostat.
Finally, another drug that also is being tested and is fairly far along in development is perifosine. It also works differently than Velcade and Revlimid, so it also may be a better alternative for you then either carfilzomib or pomalidomide.
Oh ... I almost forgot. You should check out the series of articles here about multiple myeloma vaccines. There may still be trials going on that you could participate in. I can't remember.
Good luck!
Wow! You've definitely been through a number of different treatments. I'm sorry to hear that you haven't had more success with them.
I'm going to throw out a few ideas based on reading that I've done here at the Beacon and a few other places on the Internet.
Obviously, one thing you'll want to consider is an allo transplant. It's possible you might even want to consider a second auto transplant, but your poor response to the first one suggest it might not be very helpful. Still, it could give you some extra time.
The fact that you're currently taking both Velcade and Revlimid means you are probably not as likely to respond to the new treatments carfilzomib (which is similar to Velcade) and pomalidomide (which is similar to Revlimid). As you probably know, both of these new treatments are not yet officially approved by the FDA. The only way you will be able to take them will be through a clinical trial.
Two other options that are more different than Velcade and Revlimid are elotuzumab and panobinostat. Again, they are not yet approved by the FDA, so you only will be able to take them as part of a clinical trial. My impression from some of what I've read here is that expectations are higher for elotuzumab than for panobinostat.
Finally, another drug that also is being tested and is fairly far along in development is perifosine. It also works differently than Velcade and Revlimid, so it also may be a better alternative for you then either carfilzomib or pomalidomide.
Oh ... I almost forgot. You should check out the series of articles here about multiple myeloma vaccines. There may still be trials going on that you could participate in. I can't remember.
Good luck!
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TerryH
Re: Looking for new treatment
I wouldn't necessarily rule out pomalidomide, carfilzomib, or some combination of the two if/when you can get access to them. Since you responded to Revlimid/Velcade several times, pomalidomide and carfilzomib could be effective. It looks like pomalidomide might be particularly effective even in people previously on thalidomide or Revlimid.
You also may want to look into Zolinza. It's similar to panobinostat and already approved for some other type of cancer, so your doctor might be able to prescribe it for you already, which sounds important since you said you don't want to travel to participate in a clinical trial. Likewise, Treanda is already approved for another cancer, so it might be an immediate option.
You also may want to look into Zolinza. It's similar to panobinostat and already approved for some other type of cancer, so your doctor might be able to prescribe it for you already, which sounds important since you said you don't want to travel to participate in a clinical trial. Likewise, Treanda is already approved for another cancer, so it might be an immediate option.
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Jack
Re: Looking for new treatment
Hello again Janet,
One thing you may want to discuss a bit further when describing your case is what sort of therapy you received prior to your one and only stem cell transplant.
For example, you don't mention whether you received any radiation treatment. Did you?
One thing you may want to discuss a bit further when describing your case is what sort of therapy you received prior to your one and only stem cell transplant.
For example, you don't mention whether you received any radiation treatment. Did you?
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TerryH
Re: Looking for new treatment
Well, I started a reply earlier today but seem to have lost it. I'll try again.
Thanks for taking time to respond and make suggestions.
I don't consider a 2nd auto SCT an option. I had high-dose melphalan as part of my transplant - no radiation. I had a lot of trouble with the collection -- only 3 million cells after 6 rounds of pheresis and we used them all. Before my transplant I had had thalidomide with dex and then one round of vel/rev/dex. It was several months until my SCT due to an abdominal infection that required surgery and I took Revlimid intermittently during that time.
Originally they wanted me to participate in a trial with tandem auto/allo transplants but neither of my brothers is a match. An allo has been recommended recently and they found a good unrelated donor but the insurance co. has denied coverage saying it is "investigational" and I haven't pushed it. Allo transplants scare the bejeebers out of me.
I haven't been impressed by the results of the carfilzomib trials but am very interested in pomalidomide since the Revlimid is what seemed to be the key to my prior responses. Maybe combining it with Velcade or carfilzomib??? A pomalidomide trial may be a good option since it is an oral drug and wouldn't require me to stay on site for the trial, just to return for follow-ups.
There really are a lot of new drugs being tested and it is overwhelming. My local onc. has suggested bendamustine (treanda) and my specialist is pushing a new trial they are just starting for ARRY-520. They are excited about it but it is a Phase I/II trial. Would it be smart for me to commit that much time to something so new?
Doing something that would require me to be away for an extended period (3-4 months or more) would likely mean that I would loose my job and my home. If I loose my job, I loose my sense of purpose and my insurance. I could get COBRA but it won't carry over long enough to cover me until Medicare would kick in.
Obviously I have more homework to do. And, I'll be having a long chat with my oncologist next week.
Thanks again for weighing in. I'll be checking further on some of the suggestions you have made.
Janet
Thanks for taking time to respond and make suggestions.
I don't consider a 2nd auto SCT an option. I had high-dose melphalan as part of my transplant - no radiation. I had a lot of trouble with the collection -- only 3 million cells after 6 rounds of pheresis and we used them all. Before my transplant I had had thalidomide with dex and then one round of vel/rev/dex. It was several months until my SCT due to an abdominal infection that required surgery and I took Revlimid intermittently during that time.
Originally they wanted me to participate in a trial with tandem auto/allo transplants but neither of my brothers is a match. An allo has been recommended recently and they found a good unrelated donor but the insurance co. has denied coverage saying it is "investigational" and I haven't pushed it. Allo transplants scare the bejeebers out of me.
I haven't been impressed by the results of the carfilzomib trials but am very interested in pomalidomide since the Revlimid is what seemed to be the key to my prior responses. Maybe combining it with Velcade or carfilzomib??? A pomalidomide trial may be a good option since it is an oral drug and wouldn't require me to stay on site for the trial, just to return for follow-ups.
There really are a lot of new drugs being tested and it is overwhelming. My local onc. has suggested bendamustine (treanda) and my specialist is pushing a new trial they are just starting for ARRY-520. They are excited about it but it is a Phase I/II trial. Would it be smart for me to commit that much time to something so new?
Doing something that would require me to be away for an extended period (3-4 months or more) would likely mean that I would loose my job and my home. If I loose my job, I loose my sense of purpose and my insurance. I could get COBRA but it won't carry over long enough to cover me until Medicare would kick in.
Obviously I have more homework to do. And, I'll be having a long chat with my oncologist next week.
Thanks again for weighing in. I'll be checking further on some of the suggestions you have made.
Janet
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jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Looking for new treatment
Hi Janet, three more: They're beginning with a new CD38-antibody-phase I tests at several sites. It is called MOR202 and looks even better than Elotuzumab for the side effects. (I think we have to consider this) Then Elera Pharma will come this year with EL102 in clinical trials. The agent has a completely different approach than Velcade and Rev. And there's the CD74 antibody Milatuzumab, that showed promise. Janet, good - better: all luck to you! Peter
Links:
- http://www.elarapharma.com/pdf/pr_e_20122010.pdf
- http://www.ad-hoc-news.de/morphosys-receives-research-grant-to-advance-anti-cd38--/de/News/21455024
- http://www.immunomedics.com/5clinical/Milatuzumab.html
Links:
- http://www.elarapharma.com/pdf/pr_e_20122010.pdf
- http://www.ad-hoc-news.de/morphosys-receives-research-grant-to-advance-anti-cd38--/de/News/21455024
- http://www.immunomedics.com/5clinical/Milatuzumab.html
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Parker Peter
Re: Looking for new treatment
was disappointed with my appointment this week. My local onc. doesn't seem to want to suggest the next step. I think he wants MD Anderson to call the shots. MD Anderson seems to be interested only in trials they have available.
The ARRY-520 study is full. They are preparing another study for ARRY-520 and carfilzomib but that won't be available for probably 8 weeks. The pomalidomide studies that I have looked at are restricted to 3 or fewer prior therapies -- I obviously don't qualify.
I'm going cross-eyed looking through all the study info but realistically, there are few that I qualify for: mostly they're for newly diagnosed patients, patients with fewer than 3 prior treatments or patients that are going to transplant. I've made a few calls but still haven't come up with a reasonable option. There are a couple trials at Mayo that I need to check on.
From my understanding milatuzumab and elotuzumab are part of the doxorubicin group and there are issues with max lifetime doses since I had doxorubicin previously. I'm not sure if this would be a problem. Also, panobinostat is taken up through the GI system and since I had to have part of my intestines removed, I'm not sure I would qualify for that. More calls I need to make.
There does seem to be the possibility of getting pomalidomide or carfilzomib under "compassionate use" but I'm not sure I'm to the point of qualifying for that. Several of the studies I do qualify for seem to be last chance trials. Tough to think that I have to be on my death bed to find another treatment but that may be where I am at.
Will try to put this all out of my head for the weekend and start making more calls on Monday.
Thanks again for the suggestions.
Janet
The ARRY-520 study is full. They are preparing another study for ARRY-520 and carfilzomib but that won't be available for probably 8 weeks. The pomalidomide studies that I have looked at are restricted to 3 or fewer prior therapies -- I obviously don't qualify.
I'm going cross-eyed looking through all the study info but realistically, there are few that I qualify for: mostly they're for newly diagnosed patients, patients with fewer than 3 prior treatments or patients that are going to transplant. I've made a few calls but still haven't come up with a reasonable option. There are a couple trials at Mayo that I need to check on.
From my understanding milatuzumab and elotuzumab are part of the doxorubicin group and there are issues with max lifetime doses since I had doxorubicin previously. I'm not sure if this would be a problem. Also, panobinostat is taken up through the GI system and since I had to have part of my intestines removed, I'm not sure I would qualify for that. More calls I need to make.
There does seem to be the possibility of getting pomalidomide or carfilzomib under "compassionate use" but I'm not sure I'm to the point of qualifying for that. Several of the studies I do qualify for seem to be last chance trials. Tough to think that I have to be on my death bed to find another treatment but that may be where I am at.
Will try to put this all out of my head for the weekend and start making more calls on Monday.
Thanks again for the suggestions.
Janet
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jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Looking for new treatment
Hi Janet,
I'm sorry to hear you're having a hard time finding a good treatment option.
I just wanted to follow up on one of the things you said. Doxorubicin is an antibiotic, but elotuzumab and milatuzumab are antibodies. Antibiotics and antibodies might sound kind of similar, but as far as I know, they're quite different. I wouldn't think that doxorubicin exposure would prevent you from using either of the antibodies. Although if your physician told you differently, then please ignore my comment.
I'm sorry to hear you're having a hard time finding a good treatment option.
I just wanted to follow up on one of the things you said. Doxorubicin is an antibiotic, but elotuzumab and milatuzumab are antibodies. Antibiotics and antibodies might sound kind of similar, but as far as I know, they're quite different. I wouldn't think that doxorubicin exposure would prevent you from using either of the antibodies. Although if your physician told you differently, then please ignore my comment.
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Jack
Re: Looking for new treatment
Jack,
Doxorubicin is a chemo drug also known as adriamycin. You may be thinking of doxycycline.
The information I have on maximum dosing is from the research and reading I have been doing so I'm not sure that it is totally accurate. As I said, I have more to learn.
Thanks for responding,
Janet
Doxorubicin is a chemo drug also known as adriamycin. You may be thinking of doxycycline.
The information I have on maximum dosing is from the research and reading I have been doing so I'm not sure that it is totally accurate. As I said, I have more to learn.
Thanks for responding,
Janet
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jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Looking for new treatment
Hi Janet,
I think Jack is right, actually. Doxorubicin is an antibiotic. See this page for more information on the drug,
https://myelomabeacon.org/resources/2008/10/15/doxorubicin/
Quoting: "Doxorubicin (trade name Adriamycin) or hydroxyldaunorubicin is a drug widely used in cancer chemotherapy. It is an anthracycline antibiotic ..."
This doesn't mean that it will be okay to take elotuzumab or milatuzumab if you've taken doxorubicin in the past. I haven't seen anything suggesting this, but if elotuzumab and milatuzumab have heart-related side effects, then it would make sense not to give those drugs to patients who have already received doxorubicin, given its impact on the heart.
If you find out more on this subject, please let us know.
Good luck!
I think Jack is right, actually. Doxorubicin is an antibiotic. See this page for more information on the drug,
https://myelomabeacon.org/resources/2008/10/15/doxorubicin/
Quoting: "Doxorubicin (trade name Adriamycin) or hydroxyldaunorubicin is a drug widely used in cancer chemotherapy. It is an anthracycline antibiotic ..."
This doesn't mean that it will be okay to take elotuzumab or milatuzumab if you've taken doxorubicin in the past. I haven't seen anything suggesting this, but if elotuzumab and milatuzumab have heart-related side effects, then it would make sense not to give those drugs to patients who have already received doxorubicin, given its impact on the heart.
If you find out more on this subject, please let us know.
Good luck!
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