Hello from Argentina.
My husband has been diagnosed with multiple myeloma 6 months ago, and we realized recently, after he did not respond to Velcade + dexamethasone, that there was a deletion in the chromosome 17 which complicates everything.
Any suggestions about treatments would be appreciated.
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sdeco - Name: Silvia
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: 6 months ago
- Age at diagnosis: 62
Re: Multiple myeloma with deletion of chromosome 17
Hi Silvia,
You may want to consider adding Revlimid to the mix. The Mayo guidelines suggest the combination of Velcade, Revlimid and low dose dex (VRd) for del 17p patients.
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Just because Velcade + Dex didn't work the first time, doesn't mean that they may not work when combined with another drug like Revlimid.
There are also other, newer drugs like Pomalyst and Kyprolis that can be looked at, but I'm not sure those are available yet in Argentina?
I'm sure folks that have personally been down this path with del 17p will chime in.
You may want to consider adding Revlimid to the mix. The Mayo guidelines suggest the combination of Velcade, Revlimid and low dose dex (VRd) for del 17p patients.
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Just because Velcade + Dex didn't work the first time, doesn't mean that they may not work when combined with another drug like Revlimid.
There are also other, newer drugs like Pomalyst and Kyprolis that can be looked at, but I'm not sure those are available yet in Argentina?
I'm sure folks that have personally been down this path with del 17p will chime in.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma with deletion of chromosome 17
Welcome to the forum, Silvia. I'm sorry to hear that your father's treatment is not going as well as you had hoped.
Multibilly's suggestion to add Revlimid to the Velcade-dexamethasone combination is a good one. I am worried, however, that there may be restrictions in Argentina that prevent Revlimid from being given together with Velcade, due to the treatment's cost. If that's the case, then perhaps your doctor could get approval to do alternate cycles of Velcade + dexamethasone and Revlimid + dexamethasone.
Another alternative would be to consider adding cyclophosphamide to the Velcade + dexamethasone combination, instead of Revlimid, if you can't get approval to add Revlimid.
Unfortunately, the del(17p) chromosomal abnormality, which I believe is what your father has, often makes myeloma difficult to treat. So, in general, your father's myeloma specialist should be considering rather intensive (multiple drug) options for treating your father, particularly now that he has not responded to just Velcade and dexamethasone.
There was evidence reported at the recent ASH conference that Pomalyst (pomalidomide) can be rather effective in patients with the del(17p) abnormality.
https://myelomabeacon.org/resources/mtgs/ash2013/abs/689/
If your father's physician is able to use Pomalyst to treat your father, it would be great if it could be combined with the Velcade and dexamethasone, rather than just being used with dexamethasone. If that's not possible, then it might be possible to get approval to use the Pomalyst together with dexamethasone and the antibiotic Biaxin (clarithromycin). That combination also has been studied and seems to be showing good results, although I don't believe any of the results have been reported specifically for patients with the del(17p) abnormality. See this study as an example:
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1955/
I suspect this is a bit of a long shot, but there also may be some clinical trials that might be options to consider for your father. You can search for trials at clinicaltrials.gov, and you can even restrict the searches to show trials available in Argentina (or other specific countries).
Let us know if we can be of more help.
Multibilly's suggestion to add Revlimid to the Velcade-dexamethasone combination is a good one. I am worried, however, that there may be restrictions in Argentina that prevent Revlimid from being given together with Velcade, due to the treatment's cost. If that's the case, then perhaps your doctor could get approval to do alternate cycles of Velcade + dexamethasone and Revlimid + dexamethasone.
Another alternative would be to consider adding cyclophosphamide to the Velcade + dexamethasone combination, instead of Revlimid, if you can't get approval to add Revlimid.
Unfortunately, the del(17p) chromosomal abnormality, which I believe is what your father has, often makes myeloma difficult to treat. So, in general, your father's myeloma specialist should be considering rather intensive (multiple drug) options for treating your father, particularly now that he has not responded to just Velcade and dexamethasone.
There was evidence reported at the recent ASH conference that Pomalyst (pomalidomide) can be rather effective in patients with the del(17p) abnormality.
https://myelomabeacon.org/resources/mtgs/ash2013/abs/689/
If your father's physician is able to use Pomalyst to treat your father, it would be great if it could be combined with the Velcade and dexamethasone, rather than just being used with dexamethasone. If that's not possible, then it might be possible to get approval to use the Pomalyst together with dexamethasone and the antibiotic Biaxin (clarithromycin). That combination also has been studied and seems to be showing good results, although I don't believe any of the results have been reported specifically for patients with the del(17p) abnormality. See this study as an example:
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1955/
I suspect this is a bit of a long shot, but there also may be some clinical trials that might be options to consider for your father. You can search for trials at clinicaltrials.gov, and you can even restrict the searches to show trials available in Argentina (or other specific countries).
Let us know if we can be of more help.
Re: Multiple myeloma with deletion of chromosome 17
Gosh, Silvia, I completely forgot to mention thalidomide as an option for something that your father's physicians could add to his treatment with Velcade. I suspect that thalidomide is available and relatively inexpensive in Argentina, so this is almost certainly an option.
As you may know, thalidomide is in the same class of drugs as Revlimid and Pomalyst.
The one thing that I do not know is how effective the thalidomide, Velcade, dexamethasone combination is in patients with the del(17p) abnormality. If your father is being seen by a myeloma specialist (he should be!), then the doctor should know more.
Here is a recent study that looked at Velcade, thalidomide, and dexamethasone as well as Velcade, thalidomide, dexamethasone, and cyclophosphamide as treatments for newly diagnosed myeloma patients. The "VTD" combination got a very good response:
http://jco.ascopubs.org/content/31/2/247.long
The somewhat surprising result is that adding cyclophosphamide to the VTD combination did not really provide much benefit.
As you may know, thalidomide is in the same class of drugs as Revlimid and Pomalyst.
The one thing that I do not know is how effective the thalidomide, Velcade, dexamethasone combination is in patients with the del(17p) abnormality. If your father is being seen by a myeloma specialist (he should be!), then the doctor should know more.
Here is a recent study that looked at Velcade, thalidomide, and dexamethasone as well as Velcade, thalidomide, dexamethasone, and cyclophosphamide as treatments for newly diagnosed myeloma patients. The "VTD" combination got a very good response:
http://jco.ascopubs.org/content/31/2/247.long
The somewhat surprising result is that adding cyclophosphamide to the VTD combination did not really provide much benefit.
Re: Multiple myeloma with deletion of chromosome 17
You've gotten some good suggestions so far, Sylvia. I just wanted to mention one other treatment regimen that may be available to your father and could be worth considering. It's known by the acronym VTD-PACE. As you might expect with a long acronym like that, it involves a number of different drugs. However, given that your father's disease has shown itself to be resistant to treatment with just Velcade and dexamethasone, it might make sense to consider the VTD-PACE combination.
Most myeloma specialists are familiar with VTD-PACE, although it's been used mainly at the University of Arkansas and some of the centers with physicians who formerly were at Arkansas. It also has been used at other treatment centers for particularly challenging cases of myeloma, such as cases where the disease evolves to plasma cell leukemia.
The regimen is described in this journal article:
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1365-2141.2007.06639.x/
Most myeloma specialists are familiar with VTD-PACE, although it's been used mainly at the University of Arkansas and some of the centers with physicians who formerly were at Arkansas. It also has been used at other treatment centers for particularly challenging cases of myeloma, such as cases where the disease evolves to plasma cell leukemia.
The regimen is described in this journal article:
http://onlinelibrary.wiley.com/enhanced/doi/10.1111/j.1365-2141.2007.06639.x/
Re: Multiple myeloma with deletion of chromosome 17
Silvia,
First of all, hang in there; myeloma is a strange disease, and every case is different. Almost everyone reacts differently to the same treatment. Eventually, even when a treatment works, myeloma figures out a way to combat it. But, myeloma also forgets; for example, Velcade may work for a while, then become ineffective. But a year or so later, it may work again for a while, which has happened to me.
I too was diagnosed with multiple myeloma with deletion of 17(p), and an abnormal chromosome 13, in 2010. I have been thru Velcade (twice), dexamethasone (three times), Revlimid (twice), a stem cell transplant, and Pomalyst. In my case, all the "standard treatments" helped for about six months.
I am now in a clinical trial using a monoclonal antibody, daratumumab [Darzalex], which has me near complete remission. I have been on daratumumab since October 2013, and it has lowered my plasma cells (in the bone marrow) from 47% to about 5%, and lowered my M-spike from 1.3 to 0.1. So I am happy, grateful, and hopeful that the daratumumab continues to help beyond six months.
The daratumumab trial is still recruiting patients, but the patient must have had at least three prior lines of therapy, so I imagine your husband is not yet eligible. However, for your info, the trial is NCT01985126, and info is posted at http://clinicaltrials.gov/show/NCT01985126 .
Best wishes to you and your husband. Hang in there.
First of all, hang in there; myeloma is a strange disease, and every case is different. Almost everyone reacts differently to the same treatment. Eventually, even when a treatment works, myeloma figures out a way to combat it. But, myeloma also forgets; for example, Velcade may work for a while, then become ineffective. But a year or so later, it may work again for a while, which has happened to me.
I too was diagnosed with multiple myeloma with deletion of 17(p), and an abnormal chromosome 13, in 2010. I have been thru Velcade (twice), dexamethasone (three times), Revlimid (twice), a stem cell transplant, and Pomalyst. In my case, all the "standard treatments" helped for about six months.
I am now in a clinical trial using a monoclonal antibody, daratumumab [Darzalex], which has me near complete remission. I have been on daratumumab since October 2013, and it has lowered my plasma cells (in the bone marrow) from 47% to about 5%, and lowered my M-spike from 1.3 to 0.1. So I am happy, grateful, and hopeful that the daratumumab continues to help beyond six months.
The daratumumab trial is still recruiting patients, but the patient must have had at least three prior lines of therapy, so I imagine your husband is not yet eligible. However, for your info, the trial is NCT01985126, and info is posted at http://clinicaltrials.gov/show/NCT01985126 .
Best wishes to you and your husband. Hang in there.
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Banrelk4 - Name: E.C.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 73
Re: Multiple myeloma with deletion of chromosome 17
Thanks a lot for all the great comments and suggestions. He will start a new chemotherapy tomorrow with Velcade + Revlimid + dexamethasone. I am crossing my fingers and will keep you posted about the results.
The FISH reads: del 17p13.1 gen p53.
I've been reading lately about gene therapy and apparently everything is experimental.
Please let me know if you have information about clinical trials related to gene therapy for multiple myeloma.
Thanks again!
The FISH reads: del 17p13.1 gen p53.
I've been reading lately about gene therapy and apparently everything is experimental.
Please let me know if you have information about clinical trials related to gene therapy for multiple myeloma.
Thanks again!
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sdeco - Name: Silvia
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: 6 months ago
- Age at diagnosis: 62
Re: Multiple myeloma with deletion of chromosome 17
Hello Banrelk4,
My dad has multiple myeloma with deletion of chromosome 17. He has done Revlimid, Velcade, dex, and Cytoxan. It looks like all of those are no longer effective. He's been battling it since 2013. They're going to try him on Pomalyst and Darzalex in hopes to get his levels to a point where he can do stem cell transplant.
I saw you had mentioned that you did a stem cell transplant already. That's ultimately what our next step is going to be once the levels come down. I wanted to know how your experience with stem cell transplant was, if you don't mind me asking?
Thanks,
Dan
My dad has multiple myeloma with deletion of chromosome 17. He has done Revlimid, Velcade, dex, and Cytoxan. It looks like all of those are no longer effective. He's been battling it since 2013. They're going to try him on Pomalyst and Darzalex in hopes to get his levels to a point where he can do stem cell transplant.
I saw you had mentioned that you did a stem cell transplant already. That's ultimately what our next step is going to be once the levels come down. I wanted to know how your experience with stem cell transplant was, if you don't mind me asking?
Thanks,
Dan
Re: Multiple myeloma with deletion of chromosome 17
Sdeco,
So sorry to hear about your husband's myeloma diagnosis. I also was diagnosed April 2014 with deletion 17p multiple myeloma. My treatment is Empliciti (elotuzumab), Revlimid, Velcade, and dexamethasone. Empliciti is one of the new monoclonal antibodies. It's still working for me (no transplant yet), and the side effects are minimal.
Good luck.
So sorry to hear about your husband's myeloma diagnosis. I also was diagnosed April 2014 with deletion 17p multiple myeloma. My treatment is Empliciti (elotuzumab), Revlimid, Velcade, and dexamethasone. Empliciti is one of the new monoclonal antibodies. It's still working for me (no transplant yet), and the side effects are minimal.
Good luck.
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Janet1520
Re: Multiple myeloma with deletion of chromosome 17
Hi Silvia,
I was diagnosed in May 2016 with 17p deletion, t(4;14) and 1q. I am having weekly treatments for nine months of Velcade, cyclophosphamide, and dexamethasone (CyBorD). I will have a stem cell transplant after about 4 months.
When diagnosed, my serum free light chains were 12,083. After 2 months they are down to 110.
Working really well for me.
After nine months I will likely go onto a maintenance of thalidomide.
Good luck.
Regards,
Mike
New Zealand
I was diagnosed in May 2016 with 17p deletion, t(4;14) and 1q. I am having weekly treatments for nine months of Velcade, cyclophosphamide, and dexamethasone (CyBorD). I will have a stem cell transplant after about 4 months.
When diagnosed, my serum free light chains were 12,083. After 2 months they are down to 110.
Working really well for me.
After nine months I will likely go onto a maintenance of thalidomide.
Good luck.
Regards,
Mike
New Zealand
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Mike13 - Name: Mike
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 14/05/16
- Age at diagnosis: 53
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