Our daughter at 32 was diagnosed with multiple myeloma. She had induction with Velcade and dexamethasone, which brought her a complete response (CR). Then she had an autologous stem cell transplant [ASCT] followed by 18 months of maintenance Revlimid.
The multiple myeloma seems to have come back aggressively. She now has done 3 cycles of Kyprolis (carfilzomib) and dexamethasone. It isn't working.
Now she is preparing to go into the hospital for high-dose DCEP treatment, which hopefully will knock the numbers down. They are calling this a bridge to the next treatment.
We are in the process of getting her brother tested to see if he is a match for an allogeneic (donor) stem cell transplant. Don't know what the treatment would be between DCEP and the allo.
I am afraid for her. Any thoughts, comments or further information related to DCEP would be appreciated.
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Re: DCEP for multiple myeloma: information?
HI TJ13, I have read many of your posts and realize what a difficult situation this is for your family. I hope that your daughter does better with the next round of treatments. I don't know anything about 'high dose DCEP', however. Wishing you all the best to get the health issues turned around soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: DCEP for multiple myeloma: information?
Hi TJ13,
From what I understand, DCEP is a pretty intense regimen.
"DCEP May Serve As Bridging Therapy For Relapsed Multiple Myeloma," The Myeloma Beacon, February 25, 2014.
Where does your daughter live and where is she receiving treatment? Note that it might be helpful if you logged in / registered on the Beacon so that others may easily see your other posts (I really don't know your daughter's history, so being able to see the other posts would help).
From what I understand, DCEP is a pretty intense regimen.
"DCEP May Serve As Bridging Therapy For Relapsed Multiple Myeloma," The Myeloma Beacon, February 25, 2014.
Where does your daughter live and where is she receiving treatment? Note that it might be helpful if you logged in / registered on the Beacon so that others may easily see your other posts (I really don't know your daughter's history, so being able to see the other posts would help).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: DCEP for multiple myeloma: information?
I wish your daughter all the best, TJ13. As Multibilly pointed out, DCEP can be a tough treatment regimen. Your daughter and your family will have to be really carefully she doesn't pick up any kind of infection.
I hope the regimen hits her myeloma hard, and that her next regimen brings it even further under control in preparation for the allo transplant.
I hope the regimen hits her myeloma hard, and that her next regimen brings it even further under control in preparation for the allo transplant.
Re: DCEP for multiple myeloma: information?
Tj13,
I did a similar protocol, it was DV-ACE (dex, Velcade, doxorubicin, cyclophosphamide and etoposide). I was hospitalized for 4 days of chemo, a total of 96 hours. It really wasn't bad and the side effects were minimal – mostly nausea, but they give you meds for it.
I actually did it two times, about a month apart. It was considered a bridge to my next treatment.
It took about three weeks to recover from fatigue and low blood counts, but it did bring my light chains down.
I hope your daughter has positive results from the DCEP.
Joyce Wells
Pinehurst NC
I did a similar protocol, it was DV-ACE (dex, Velcade, doxorubicin, cyclophosphamide and etoposide). I was hospitalized for 4 days of chemo, a total of 96 hours. It really wasn't bad and the side effects were minimal – mostly nausea, but they give you meds for it.
I actually did it two times, about a month apart. It was considered a bridge to my next treatment.
It took about three weeks to recover from fatigue and low blood counts, but it did bring my light chains down.
I hope your daughter has positive results from the DCEP.
Joyce Wells
Pinehurst NC
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Joyjoyful - Name: Joyce Wells
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12/2002
- Age at diagnosis: 55
Re: DCEP for multiple myeloma: information?
Thank you, Joyjoyful. I hope this works. She will probably do this twice.
Don't know yet what the next protocol will be, but we are going to go for a second opinion in the next step.
It's all so scary for someone you love so much. Our son is being tested to see if he is a match for an allo transplant.
Don't know yet what the next protocol will be, but we are going to go for a second opinion in the next step.
It's all so scary for someone you love so much. Our son is being tested to see if he is a match for an allo transplant.
Re: DCEP for multiple myeloma: information?
I am currently in the hospital receiving my second round of TD-PACE which is similar. I also get Krypolis out-patient in between instead of Velcade (since I failed to respond to RVD). The nausea is manageable with medications and I am hopeful that my light chains will drop. I have never broken the 1000 barrier for kappa. The plan for me is to do an auto transplant followed 45 days later by an allo transplant. My three siblings are being tested now for a match. Good luck to you and I'm happy to discuss more if you're interested!
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: DCEP for multiple myeloma: information?
Our son is getting tested to see if he is a donor match. Our daughter doesn't really want to do an allo but I think there will not be much choice left. We are going to go for another opinion on what the next step will be.
Re: DCEP for multiple myeloma: information?
Hi Terrij,
This is obviously a really tough choice to make for everyone involved. It's hard to believe that she is having to deal with this level of disease at such an incredibly young age. Folks on this forum might have some suggestions on where your daughter can go for a second opinion if you let us know what state she lives in.
Wishing your daughter good success in her journey.
This is obviously a really tough choice to make for everyone involved. It's hard to believe that she is having to deal with this level of disease at such an incredibly young age. Folks on this forum might have some suggestions on where your daughter can go for a second opinion if you let us know what state she lives in.
Wishing your daughter good success in her journey.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: DCEP for multiple myeloma: information?
We are planning on going to the Hospital of University of Pennsylvania. She lives in Philadelphia. We like her doctor at Thomas Jefferson Hospital in Philly but it seems like things have been changing quickly since June.
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