Hi Moonscape,
In your place, I'd be asking your doctor why you should even go on maintenance therapy, given the response you've gotten.
To this day, I can't understand people who blithely assume that every multiple myeloma patient should go on maintenance therapy. If you look into the long literature on maintenance therapy for multiple myeloma, you'll find that
1. Historically, there is very little evidence that it improves overall survival,
2. You have to cherry pick data from modern studies to find an overall survival benefit
3. It definitely affects quality of life (negatively for most)
4. Its potential for having a negative impact on overall survival grows as patients are living longer -- that is, as bone marrows, hearts, livers, and blood vessels get more and more beat up by treatment
Of course, the drug companies love how their investment in selectively researching and publishing about maintenance therapy has paid off. Who do you think benefits the most from the marginal, if any, survival benefit from maintenance therapy as the "modern paradigm" for treating multiple myeloma?
If you do decide to go on maintenance therapy, I would lean toward continuing Velcade therapy and reserving Ninlaro for later use. I frankly don't understand the philosophy of doing lots of different treatments within a short period of time. I think there's good evidence in favor of the alternate, "ride the horse as long as you can" approach. The PN you may be experiencing could be due to the combination of Revlimid and Velcade, rather than just Velcade, and there may be less of an issue on a less frequent maintenance dosing of Velcade.
(But if the PN does worsen on maintenance Velcade, by all means switch to either Revlimid or Ninlaro.)
Also, it is possible to self-inject Velcade. At least one person here in the forum is doing it, and there has been at least one study about it. See these threads:
https://myelomabeacon.org/forum/self-injecting-velcade-my-experience-t3893.html
https://myelomabeacon.org/forum/study-velcade-self-administration-t6602.html
https://myelomabeacon.org/forum/self-injecting-velcade-anybody-else-t4293.html
Forums
Re: Velcade maintenance for non-SCT patients
JPC - You're right, I'm not plain vanilla, this is what I learned here from my first posting, from the specialists I've spoken to (my own, and at a conference), and from not reading anyone else's story that is much like mine in the forum. Interesting about Revlimid perhaps being most successful in more vanilla cases, and suspect you hit on the Velcade rationale. Don't think insurance will cover Ninlaro for maintenance, and Jonah makes a good point about the up side of reserving new agents for later. Do you know if one becomes refractory to Velcade if that affects Ninlaro's action? (Side note: I've learned so much from your posts. Your wife has an amazing carer and advocate!)
Jonah - You're inspiring me to research maintenance vs no maintenance more thoroughly. Certainly, at the patient conference I attended, they seemed in favor of maintenance, as is my specialist, though she said she would not put me through it if I didn't tolerate it well. The thinking (as I understand it) goes: stay with what's working, as when myeloma rises up again it's much harder to tamp down.
One specialist I spoke with briefly at the conference (director of myeloma program at a major center) said in my case, because of my unusual presentation and difficulty tracking, I should stay on full-out chemo indefinitely. I was stunned. Didn't think my own spec would agree (she doesn't), but resolved I wasn't going to do that in any case.
Although secretory, my numbers have never been high. Clear PET, <5% plasma cells. However, when my tumor ortho surgeon did follow-up xrays of my two areas of greatest complaint (fibula and forearm), in two months my forearm lesion had doubled. So, in spite of low numbers, myeloma was busily destructive. Due to radiation concerns, monitoring for me will be annual MRI, in addition to IgA and light chain, which might or might not be immediately revealing. I've never wished more to be ordinary! It's lonely out here.
Am heartened at the prospect peripheral neuropathy might not advance with reduced Velcade (perhaps even reduce?) and will remain open to it. My local oncologist surmised one reason for the Velcade preference could be to reserve Revlimid for later as it's used more often in combination with other therapies.
I don't know if the fact I'm not, like the OP, a stem cell transplant patient (reserving that for later if needed) affects the Velcade recommendation.
Thanks to you both. Your input is so very valuable.
Jonah - You're inspiring me to research maintenance vs no maintenance more thoroughly. Certainly, at the patient conference I attended, they seemed in favor of maintenance, as is my specialist, though she said she would not put me through it if I didn't tolerate it well. The thinking (as I understand it) goes: stay with what's working, as when myeloma rises up again it's much harder to tamp down.
One specialist I spoke with briefly at the conference (director of myeloma program at a major center) said in my case, because of my unusual presentation and difficulty tracking, I should stay on full-out chemo indefinitely. I was stunned. Didn't think my own spec would agree (she doesn't), but resolved I wasn't going to do that in any case.
Although secretory, my numbers have never been high. Clear PET, <5% plasma cells. However, when my tumor ortho surgeon did follow-up xrays of my two areas of greatest complaint (fibula and forearm), in two months my forearm lesion had doubled. So, in spite of low numbers, myeloma was busily destructive. Due to radiation concerns, monitoring for me will be annual MRI, in addition to IgA and light chain, which might or might not be immediately revealing. I've never wished more to be ordinary! It's lonely out here.
Am heartened at the prospect peripheral neuropathy might not advance with reduced Velcade (perhaps even reduce?) and will remain open to it. My local oncologist surmised one reason for the Velcade preference could be to reserve Revlimid for later as it's used more often in combination with other therapies.
I don't know if the fact I'm not, like the OP, a stem cell transplant patient (reserving that for later if needed) affects the Velcade recommendation.
Thanks to you both. Your input is so very valuable.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Velcade maintenance for non-SCT patients
Hello Moonscape:
We all have to make certain decisions in cases where we are told by the doctors that there is no clear answer from the research and clinical trials at this point. Even if there was a clear answer (say in the recent data on Revlimid maintenance vs no maintenance), then there is no guarantee that the "answer" would work in our individual case, and you might be an "outlier." Still we all want to research and make the best decision we can. But, as I mentioned, it sounds like your doctor is very much on top of it.
Briefly, on the Ninlaro front, I recall reading that there is a population, not large (20%?), that does get a response to Ninlaro after becoming refractory to Velcade. I think you can probably look at Ninlaro as being the oral version of Velcade, but that is not exactly the case 100%, so that is a judgement call as well. Any t(4,14) patient would default to Velcade maintenance based on the research. If you were fortunate to get a good response (say CR or nCR), and Velcade was indicated, my opinion is that many doctors and patients would go right to the Ninlaro, if it was available, simply on the idea that the maintenance phase is in theory supposed to be relatively easy.
As Jonah mentioned, it is a new agent, however, it is not a new class of agent. As Ninlaro is new, there are still insurance issues with it being used "off label" in the US. I would expect that over time (hopefully a quick period of time) that since its an oral agent, it will start to get fully approved for maintenance applications, and insurance would then cover it.
Hope your maintenance period works for a very long time.
We all have to make certain decisions in cases where we are told by the doctors that there is no clear answer from the research and clinical trials at this point. Even if there was a clear answer (say in the recent data on Revlimid maintenance vs no maintenance), then there is no guarantee that the "answer" would work in our individual case, and you might be an "outlier." Still we all want to research and make the best decision we can. But, as I mentioned, it sounds like your doctor is very much on top of it.
Briefly, on the Ninlaro front, I recall reading that there is a population, not large (20%?), that does get a response to Ninlaro after becoming refractory to Velcade. I think you can probably look at Ninlaro as being the oral version of Velcade, but that is not exactly the case 100%, so that is a judgement call as well. Any t(4,14) patient would default to Velcade maintenance based on the research. If you were fortunate to get a good response (say CR or nCR), and Velcade was indicated, my opinion is that many doctors and patients would go right to the Ninlaro, if it was available, simply on the idea that the maintenance phase is in theory supposed to be relatively easy.
As Jonah mentioned, it is a new agent, however, it is not a new class of agent. As Ninlaro is new, there are still insurance issues with it being used "off label" in the US. I would expect that over time (hopefully a quick period of time) that since its an oral agent, it will start to get fully approved for maintenance applications, and insurance would then cover it.
Hope your maintenance period works for a very long time.
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JPC - Name: JPC
Re: Velcade maintenance for non-SCT patients
Hi friends,
This is a topic that also interests me. I have just completed 8 cycles of Revlimid, Velcade, and dexamethasone (RVD), and have reached remission numbers! The docs. want me to have a stem cell transplant at this point. I am very reluctant. Quite honestly, I am not happy that maintenance therapy is STILL needed after the transplant. I had developed 2 blood clots taking Revlimid. I needed to go on subcutaneous injections of Arixtra (fondaparinux), every night. A big concern is the increase of other cancers after taking Revlimid. Is it worth the chance?? The docs. have prescribed I go on Velcade as maintenance therapy, due to the blood clot problem. That has many side effects, as well.
So I'm also interested in how common it is to go on Velcade as maintenance therapy, without a transplant, and what to expect if I go that route.
On a positive note, while taking the RVD, my red cell aplasia went away! I am now producing a normal amount of red cells, after 20 years of monthly transfusions! I also took a 3 month leave of absence from my workplace during the treatment. I was working in a hospital, where chemical fumes were in the air, a large part of the day, depending on the area. These fumes would create headaches, nausea and dizziness. Believe me, I tried to avoid the fumes as much as possible. My lambda was going down quite nicely initially, and then shot up to 3500! A new chemical had been introduced, which alerted me to investigate the material safety data sheets. Unbeknownst to me, none of these chemicals should have been inhaled! Proper ventilation was needed. Unfortunately, there was none. These chemicals were said to cause damage to the liver, kidneys, central nervous system, lymphatic system and blood! Hence, the leave of absence. After leaving, my lambda decreased nicely and red cell production had begun!
Twenty years ago, I had worked in a factory where I was subjected to breathing petroleum mists, degreasers, etc., etc. That is what initially harmed my bone marrow, causing me to need monthly transfusions. If any of you are working with chemicals, consider the effects they can have on the body. I have since gotten a chemical free job. And will no longer drive the tractor I would use while gardening, or use the weed wacker, or the gas powered leaf blower. I am avoiding all chemicals, and hopefully, just maybe, the multiple myeloma will not come back?
This is a topic that also interests me. I have just completed 8 cycles of Revlimid, Velcade, and dexamethasone (RVD), and have reached remission numbers! The docs. want me to have a stem cell transplant at this point. I am very reluctant. Quite honestly, I am not happy that maintenance therapy is STILL needed after the transplant. I had developed 2 blood clots taking Revlimid. I needed to go on subcutaneous injections of Arixtra (fondaparinux), every night. A big concern is the increase of other cancers after taking Revlimid. Is it worth the chance?? The docs. have prescribed I go on Velcade as maintenance therapy, due to the blood clot problem. That has many side effects, as well.
So I'm also interested in how common it is to go on Velcade as maintenance therapy, without a transplant, and what to expect if I go that route.
On a positive note, while taking the RVD, my red cell aplasia went away! I am now producing a normal amount of red cells, after 20 years of monthly transfusions! I also took a 3 month leave of absence from my workplace during the treatment. I was working in a hospital, where chemical fumes were in the air, a large part of the day, depending on the area. These fumes would create headaches, nausea and dizziness. Believe me, I tried to avoid the fumes as much as possible. My lambda was going down quite nicely initially, and then shot up to 3500! A new chemical had been introduced, which alerted me to investigate the material safety data sheets. Unbeknownst to me, none of these chemicals should have been inhaled! Proper ventilation was needed. Unfortunately, there was none. These chemicals were said to cause damage to the liver, kidneys, central nervous system, lymphatic system and blood! Hence, the leave of absence. After leaving, my lambda decreased nicely and red cell production had begun!
Twenty years ago, I had worked in a factory where I was subjected to breathing petroleum mists, degreasers, etc., etc. That is what initially harmed my bone marrow, causing me to need monthly transfusions. If any of you are working with chemicals, consider the effects they can have on the body. I have since gotten a chemical free job. And will no longer drive the tractor I would use while gardening, or use the weed wacker, or the gas powered leaf blower. I am avoiding all chemicals, and hopefully, just maybe, the multiple myeloma will not come back?
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Roxie - Name: Lynn S.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/13/2016
- Age at diagnosis: 58
Re: Velcade maintenance for non-SCT patients
I am under the care of a myeloma specialist and have been on Velcade maintenance for nearly 4 years. I receive it every three weeks at 1.3 mg / square inch. I have NO side effects and I maintain a complete stringent response. Do I need it? Who knows. But I am willing to continue since it allows me to maintain an excellent quality of life with no ill effects.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Velcade maintenance for non-SCT patients
I would like to share my experience. I harvested my cells after achieving a complete response (CR) with cyclophosphamide, Velcade, and dexamethasone (CyBorD) induction therapy at age 67. No CRAB symptoms. I decided to delay transplant. I have been on subcutaneous Velcade-only maintenance for about 2 years, twice a month. So far I have tolerated it well. No additional neuropathy other than what I had, previously, due to diabetes. Recently, the M-spike has been going up, now 0.36 g/dL (3.6 g/l). So, likely, the treatment may need some modification / replacement.
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DexMed - Name: GV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2010 Smoldering. Symptomatic 9/2014
- Age at diagnosis: 62
Re: Velcade maintenance for non-SCT patients
Hello Moonscape,
After nine months of induction therapy with Revlimid, Velcade, and dexamethasone (RVD), I plateaued with a very good partial response (VGPR). I chose maintenance over a stem cell transplant. I planned to use Revlimid but had developed serious side effects, so went to Velcade injections only, every two weeks. My neuropathy has disappeared! At this point, diarrhea and nausea are managed. My specialist said that about half of his eligible patients choose not to undergo an initial stem cell transplant. Good luck to you.
After nine months of induction therapy with Revlimid, Velcade, and dexamethasone (RVD), I plateaued with a very good partial response (VGPR). I chose maintenance over a stem cell transplant. I planned to use Revlimid but had developed serious side effects, so went to Velcade injections only, every two weeks. My neuropathy has disappeared! At this point, diarrhea and nausea are managed. My specialist said that about half of his eligible patients choose not to undergo an initial stem cell transplant. Good luck to you.
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Hummingbird
Re: Velcade maintenance for non-SCT patients
My induction treatment of Velcade and dexamethasone lasted 9 months until June 2015. No maintenance after that. My blood test this month shows no M protein, and my kappa, lambda and kappa-lambda ratio numbers all within normal range.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Velcade maintenance for non-SCT patients
Just to add to what others have said. My sister (post transplant) has now been put on Velcade maintenance. She is self injecting every other day. The reason why it was decided over Revlimid was that Revlimid was getting her white blood cell count too low to continue. Despite peripheral neuropathy, she tolerates Velcade better overall.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Velcade maintenance for non-SCT patients
I was on Velcade and dexamethasone from February 2016 until September 2016. All of my numbers were heading in the right direction – what should go up was going up, and what should go down was going down. My doctor scheduled another bone marrow biopsy and the result was "no myeloma cells". However, because all of my blood tests weren't exactly where they need to be, he put me on maintenance with Velcade. I have a shot each Tuesday for 4 Tuesdays and then skip 2 Tuesdays and start over.
I have not had a stem cell transplant and my doctor says he doesn't feel I need one. Just two weeks ago he did the full regimen of blood work as well as the protein, and all the numbers are still heading in the right direction.
I wish I didn't have to have the weekly maintenance shots of Velcade, but I am certainly not going to stop getting them for as long as the tests determine I need them. I would assume that once I have gotten within the proper ranges he will continue to monitor me and discontinue the Velcade. Whatever he recommends is whatever I will do because I have faith in his skill.
I have not had any neuropathy or any other negative symptoms from the Velcade except the itchy stomach for a couple of days after the injection.
I am blessed and I know it.
I have not had a stem cell transplant and my doctor says he doesn't feel I need one. Just two weeks ago he did the full regimen of blood work as well as the protein, and all the numbers are still heading in the right direction.
I wish I didn't have to have the weekly maintenance shots of Velcade, but I am certainly not going to stop getting them for as long as the tests determine I need them. I would assume that once I have gotten within the proper ranges he will continue to monitor me and discontinue the Velcade. Whatever he recommends is whatever I will do because I have faith in his skill.
I have not had any neuropathy or any other negative symptoms from the Velcade except the itchy stomach for a couple of days after the injection.
I am blessed and I know it.
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Brenda Crawford - Name: Brenda Crawford
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2/16/16
- Age at diagnosis: 67
20 posts
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