Sorry for the long post but my husband (age 51) was diagnosed in December 2011 and had induction chemo of RVD (Revlimid, Velcade, dexamethasone) for 2 months, then CyBorD (cyclophosphamide, Velcade, dexamethasone) for 8 months followed by an auto transplant in January 2013.
He has been on every other week Velcade maintenance since then with no real problems but increasing fatigue. He has never reached a complete response, and his M-spike bobbles around the 0.4-0.6 g/dL range; all other labs are normal.
He has 17p deletion but he also has a trisomy so I think that he has responded better than a lot of 17p deletion patients because of that reason.
His doctor is now talking about moving from maintenance to observation, and I'm not sure how to proceed from here. Does he keep doing the every other week Velcade because it has kept his myeloma in check, or can he go without and then if it starts to be active again, he starts treatment or will it be too late by then?
Have there been any further studies on 17p deletion and maintenance Velcade and how long patients should stay on it?
Forums
9 posts
• Page 1 of 1
-
Morank - Name: Kim and Jeff
- Who do you know with myeloma?: Spouse- Jeff
- When were you/they diagnosed?: Dec. 2011
- Age at diagnosis: 47
Re: When to stop maintenance Velcade with del(17p)?
I will be very interested in seeing other responses to your posting. I have the 17p deletion mutation as well. I will be going to Mayo in Rochester next week for my auto SCT. I was told by my doctors that I will probably be on Velcade maintenance for about 2 years or longer after the SCT. The 17p del is a tough one to beat, so we have our challenges ahead, that is for sure.
-
CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: When to stop maintenance Velcade with del(17p)?
Kim,
My wife's situation is very similar to your husband's. She was diagnosed in September 2012, has del(17p), has never reached CR, but has been stable since autoSCT in February 2013. She had RVd induction and had VGPR to 0.5 g/dL (5 g/L) M-spike prior to transplant. Her post-transplant M-spike has been between 0.5 and 0.7 g/dL.
Some things are a bit different: Her maintenance therapy has been more intense, with CyBorD for about 6 months before going to Velcade + 20 mg dex every week (no breaks) at 1.5 mg/m2 plus Revlimid 10-15 mg 14 days out of 21.
Her labs are mostly normal, except that lymphocytes have always been low and LDH has lately been high; uninvolved immunoglobulins are suppressed (IgA, IgM, and kappa). Besides del(17p), she also has t(4;14), but no trisomies.
Your husband has been on therapy about 9 months longer, but my wife's treating physician has said that in a few months we should consider cutting back treatment. I have the same question as you: Is her treatment keeping the myeloma at bay, or did the induction / transplant suppress the disease to the point where it will not grow for a long time, with or without treatment? For all I know, her current burden of cancer cells may already be insensitive to her current drug regimen. Although it's not getting worse, it's also not getting any better.
One problem with stopping treatment is that relapse may come suddenly and rapidly. I've read that this is frequently the case with del(17p). But I don't know how much of a problem that is; could it be hard to get the disease back under control? The good thing about stopping treatment is improved quality of life and avoiding long-term toxicity.
I think the opposite option should also be considered: Switch to a different drug regimen in the hope of getting a deeper response, maybe even CR or sCR, without waiting for progression. If we wait for clear evidence that the current regimen has failed (or stop treatment until definite progression), perhaps it will be too late.
Officially, the newest approved drugs (Kyprolis [carfilzomib] and Pomalyst [pomalidomide]) are indicated only after others have failed, but in the US they can be prescribed any time. The most effective drugs seem to be the new monoclonal antibodies (anti-CD38 and anti-CD1), but they are available only in clinical trials. But nearly all clinical trials accept only newly-diagnosed or relapsed / refractory patients -- those with active but stable disease are excluded, much to our frustration.
I'm sorry that I don't have an answer to your question. My wife and I are faced with the same difficult choice.
Best wishes,
Larry
My wife's situation is very similar to your husband's. She was diagnosed in September 2012, has del(17p), has never reached CR, but has been stable since autoSCT in February 2013. She had RVd induction and had VGPR to 0.5 g/dL (5 g/L) M-spike prior to transplant. Her post-transplant M-spike has been between 0.5 and 0.7 g/dL.
Some things are a bit different: Her maintenance therapy has been more intense, with CyBorD for about 6 months before going to Velcade + 20 mg dex every week (no breaks) at 1.5 mg/m2 plus Revlimid 10-15 mg 14 days out of 21.
Her labs are mostly normal, except that lymphocytes have always been low and LDH has lately been high; uninvolved immunoglobulins are suppressed (IgA, IgM, and kappa). Besides del(17p), she also has t(4;14), but no trisomies.
Your husband has been on therapy about 9 months longer, but my wife's treating physician has said that in a few months we should consider cutting back treatment. I have the same question as you: Is her treatment keeping the myeloma at bay, or did the induction / transplant suppress the disease to the point where it will not grow for a long time, with or without treatment? For all I know, her current burden of cancer cells may already be insensitive to her current drug regimen. Although it's not getting worse, it's also not getting any better.
One problem with stopping treatment is that relapse may come suddenly and rapidly. I've read that this is frequently the case with del(17p). But I don't know how much of a problem that is; could it be hard to get the disease back under control? The good thing about stopping treatment is improved quality of life and avoiding long-term toxicity.
I think the opposite option should also be considered: Switch to a different drug regimen in the hope of getting a deeper response, maybe even CR or sCR, without waiting for progression. If we wait for clear evidence that the current regimen has failed (or stop treatment until definite progression), perhaps it will be too late.
Officially, the newest approved drugs (Kyprolis [carfilzomib] and Pomalyst [pomalidomide]) are indicated only after others have failed, but in the US they can be prescribed any time. The most effective drugs seem to be the new monoclonal antibodies (anti-CD38 and anti-CD1), but they are available only in clinical trials. But nearly all clinical trials accept only newly-diagnosed or relapsed / refractory patients -- those with active but stable disease are excluded, much to our frustration.
I'm sorry that I don't have an answer to your question. My wife and I are faced with the same difficult choice.
Best wishes,
Larry
-
LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: When to stop maintenance Velcade with del(17p)?
Kim and Jeff, Cabingirl, and Larry,
I was diagnosed with 17p deletion, IgG kappa (off the charts), 12% healthy blood cells, and bones that looked like Swiss cheese. In other words, sitting on Death's door. That was January of 2013. I did the RVD (4 rounds, if I recall correctly), and then ASCT in early June of the same year at City of Hope in CA. I had a VGPR.
When I returned to Honolulu I began a maintenance therapy with Velcade and dex (20 mg, as the usual 40 mg made me a lunatic). Within several months I began asking my doctor about going off Velcade. Sometime around the beginning of 2014 he agreed to let me discontinue all multiple myeloma meds.
As of today (January 30, 2015) I remain off all meds other than low dose methylprednisolone (mainly for energy) and sleep meds (lack of sleep and energy remain my biggest complaints). My blood-work is good, though not entirely normal. I remain somewhat anemic, above normal blood volume (apparently this will probably never change), my FISH is relatively normal (about the best I can hope for), kappa/lambda ratio is 0.59 (wonderful!), there is that pesky "shadow" on the CD38(?) gene that cannot be interpreted, and my immunoglobulins fluctuate a lot.
I get a CBC every other month and a complete workup on alternating months. So going off Velcade seems to have been the right decision for me. Full disclosure here, my doctors tell me that I have responded better and am doing better than any 17 deletion they've ever had.
Kim, obviously only you, Jeff, and his doctors can make this decision. If you decide to go off the Velcade, I really recommend you get blood-work every other week, at least initially, as this will assuage the constant fears that your mind will present to you.
Wishing you the best
Aloha
Daniel
I was diagnosed with 17p deletion, IgG kappa (off the charts), 12% healthy blood cells, and bones that looked like Swiss cheese. In other words, sitting on Death's door. That was January of 2013. I did the RVD (4 rounds, if I recall correctly), and then ASCT in early June of the same year at City of Hope in CA. I had a VGPR.
When I returned to Honolulu I began a maintenance therapy with Velcade and dex (20 mg, as the usual 40 mg made me a lunatic). Within several months I began asking my doctor about going off Velcade. Sometime around the beginning of 2014 he agreed to let me discontinue all multiple myeloma meds.
As of today (January 30, 2015) I remain off all meds other than low dose methylprednisolone (mainly for energy) and sleep meds (lack of sleep and energy remain my biggest complaints). My blood-work is good, though not entirely normal. I remain somewhat anemic, above normal blood volume (apparently this will probably never change), my FISH is relatively normal (about the best I can hope for), kappa/lambda ratio is 0.59 (wonderful!), there is that pesky "shadow" on the CD38(?) gene that cannot be interpreted, and my immunoglobulins fluctuate a lot.
I get a CBC every other month and a complete workup on alternating months. So going off Velcade seems to have been the right decision for me. Full disclosure here, my doctors tell me that I have responded better and am doing better than any 17 deletion they've ever had.
Kim, obviously only you, Jeff, and his doctors can make this decision. If you decide to go off the Velcade, I really recommend you get blood-work every other week, at least initially, as this will assuage the constant fears that your mind will present to you.
Wishing you the best
Aloha
Daniel
-
DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: When to stop maintenance Velcade with del(17p)?
I've achieved complete stringent remission about 17 months ago and remain in remission doing Velcade and IV dex every other week. I discussed last week with my local oncologist the possibility of stretching those treatments to every three weeks. He's on board and says there are no studies that maintenance treatment is of benefit.
I've read those that have had a SCT do better on maintenance therapy. I haven't, and do not plan on having a SCT. I don't have deletion 17, but I do have t(4,14) and t(14,16). I will discuss the decrease frequency of maintenance treatment with my specialist in a few months to hear his opinion.
I am a bit leary of changing the protocol since I tolerate treatment well and am doing great, but I would like to have a little more time away from cancer thoughts and one cannot avoid those thoughts when in a chemo room every other week.
But then my thinking says, if every three weeks of treatment keeps me at a 0 M-spike, perhaps once a month would do the same.
Have you asked your doc whether, instead of eliminating treatment, you could decrease the frequency and see how your husband does?
I've read those that have had a SCT do better on maintenance therapy. I haven't, and do not plan on having a SCT. I don't have deletion 17, but I do have t(4,14) and t(14,16). I will discuss the decrease frequency of maintenance treatment with my specialist in a few months to hear his opinion.
I am a bit leary of changing the protocol since I tolerate treatment well and am doing great, but I would like to have a little more time away from cancer thoughts and one cannot avoid those thoughts when in a chemo room every other week.
But then my thinking says, if every three weeks of treatment keeps me at a 0 M-spike, perhaps once a month would do the same.
Have you asked your doc whether, instead of eliminating treatment, you could decrease the frequency and see how your husband does?
-
torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: When to stop maintenance Velcade with del(17p)?
Thank you all for your answers. I think that we will discuss with the doctor other regimens, possibly sticking with the Velcade but doing once a month or something, and also how closely they will monitor his M-spike and at what point will they re-start treatment.
It is so hard to know what the correct path forward is, but my husband is tired of being in treatment for the last 3 years and would love to be off all meds.
It is so hard to know what the correct path forward is, but my husband is tired of being in treatment for the last 3 years and would love to be off all meds.
-
Morank - Name: Kim and Jeff
- Who do you know with myeloma?: Spouse- Jeff
- When were you/they diagnosed?: Dec. 2011
- Age at diagnosis: 47
Re: When to stop maintenance Velcade with del(17p)?
Hi,
My Dad has p53d. First compression fracture in May 2010, second fracture in May 2011, and officially diagnosed in November 2011.
He went through induction of VTD (Velcade, thalidomide, dex) for almost a year. He collected stem cells in November 2012. He went through several more induction cycles until ASCT in September 2013. He achieved VGPR, and he remains in almost-remission until this day. No maintenance was given post-ASCT.
His is kappa FLC myeloma, with no M-Spike. His FLC ratio is now just a touch above normal, but was down from the last reading. He is due for another blood test at the end of this February. Hopefully the trend continues! There is hope!
My Dad has p53d. First compression fracture in May 2010, second fracture in May 2011, and officially diagnosed in November 2011.
He went through induction of VTD (Velcade, thalidomide, dex) for almost a year. He collected stem cells in November 2012. He went through several more induction cycles until ASCT in September 2013. He achieved VGPR, and he remains in almost-remission until this day. No maintenance was given post-ASCT.
His is kappa FLC myeloma, with no M-Spike. His FLC ratio is now just a touch above normal, but was down from the last reading. He is due for another blood test at the end of this February. Hopefully the trend continues! There is hope!
Re: When to stop maintenance Velcade with del(17p)?
It is great to see that you are doing so well. There is a subset of patient with del(17p) that do better than the average, and clearly we are seeing some of that based on the posts here.
We have seen in multiple experiences, unfortunately, the shorter survival with del(17p). There is data that has been published from Dr. Lonial's group about their experience with prolonged Revlimid / Velcade maintenance [see related Beacon news article], and it is similar to our own experience in high-risk myeloma.
If you are in remission and tolerating therapy well (with no peripheral neuropathy), I would strongly advocate continuing the maintenance therapy. I understand fatigue and frustration, and I hope that the oral proteasome inhibitor, ixazomib, will soon be soon and allow you to continue maintenance therapy with a better quality of life.
We have seen in multiple experiences, unfortunately, the shorter survival with del(17p). There is data that has been published from Dr. Lonial's group about their experience with prolonged Revlimid / Velcade maintenance [see related Beacon news article], and it is similar to our own experience in high-risk myeloma.
If you are in remission and tolerating therapy well (with no peripheral neuropathy), I would strongly advocate continuing the maintenance therapy. I understand fatigue and frustration, and I hope that the oral proteasome inhibitor, ixazomib, will soon be soon and allow you to continue maintenance therapy with a better quality of life.
-
Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: When to stop maintenance Velcade with del(17p)?
I like what Dr. Shah said about there being a subset of del(17p) patients that seem to do well. Is there any information on these patients that may determine why they are doing better than most – either things about their diet or lifestyle, or the biology of their myeloma?
-
Janet1520
9 posts
• Page 1 of 1
Return to Treatments & Side Effects