Hi, everyone
I recently wrote here in the forum about my sister's unfortunate relapse with multiple cutaneous plasmacytomas prior to her planned ASCT. You can read about more here:
"Extramedullary disease on the head / skull" (started Nov 2, 2016)
My sister now has started a new chemo regimen called EDAP, which includes etoposide, dexamethasone, cytarabine ("Ara-C"), and cisplatin (Platinol). I have searched the forum and did not find a single account of someone having treatment with any of these drugs, except dex, of course.
I found some published papers about the regimen:
Barlogie, B., et al, "Salvage Therapy for Multiple Myeloma: The University of Arkansas Experience," Mayo Clinic Proceedings, Aug 1994 (abstract)
Barlogie, B., et al, "Etoposide, dexamethasone, cytarabine, and cisplatin in vincristine, doxorubicin, and dexamethasone-refractory myeloma," Journal of Clinical Oncology, Oct 1989 (abstract, full text PDF)
I would be interested in any information forum members may have about the EDAP regimen, particularly in cases of extramedullary disease.
I have heard about Pomalyst (pomalidomide, Imnovid) working well for extramedullary disease. I am wondering if the EDAP regimen was prescribed due to lack of availability of more effective drugs. My sister is in Russia where there are so called 'quotes' - special free prescription allowances for cancer patients that may exclude certain drugs. Or if the choice was for solid clinical reasons.
Having said that, despite horrible side effects, she has noticed that the largest lesion on her head has softened (it was very hard) and does not hurt any more following one day of infusion. We are keeping our fingers crossed.
It is a high dose aggressive treatment of 4 days continuous inpatient infusion followed by several days inpatient 'flushing' of the system with other drugs to counter the chemo drug toxicity. I don't know how many rounds she will have.
The plan is to get her back in remission and then do an autologous stem cell transplant.
Forums
4 posts
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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: EDAP treatment regimen
Hi Gala,
It's not quite the same as EDAP (etoposide, dex, cytarabine, cisplatin), but a similar protocol "DCEP" (etoposide, dex, cyclophosphamide, cisplatin) is seen as a "bridging therapy" to help stabilize the disease until the next treatment. See this Beacon article:
https://myelomabeacon.org/news/2014/02/25/dcep-bridging-therapy-relapsed-multiple-myeloma/
Karen
It's not quite the same as EDAP (etoposide, dex, cytarabine, cisplatin), but a similar protocol "DCEP" (etoposide, dex, cyclophosphamide, cisplatin) is seen as a "bridging therapy" to help stabilize the disease until the next treatment. See this Beacon article:
https://myelomabeacon.org/news/2014/02/25/dcep-bridging-therapy-relapsed-multiple-myeloma/
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: EDAP treatment regimen
Hi Gala,
Just to add a little to what Karen wrote, there are at least two discussions here in the forum with information about the DCEP protocol:
"DCEP - information & experiences?" (started Oct 31, 2014)
"Anyone had success with DCEP treatment?" (started July 7, 2016)
The etoposide that is part of the EDAP regimen is also included in "PACE" regimens, such as D-PACE, VTD-PACE, and VRD-PACE.
I hope your sister's multiple myeloma responds to the EDAP regimen.
Just to add a little to what Karen wrote, there are at least two discussions here in the forum with information about the DCEP protocol:
"DCEP - information & experiences?" (started Oct 31, 2014)
"Anyone had success with DCEP treatment?" (started July 7, 2016)
The etoposide that is part of the EDAP regimen is also included in "PACE" regimens, such as D-PACE, VTD-PACE, and VRD-PACE.
I hope your sister's multiple myeloma responds to the EDAP regimen.
Re: EDAP treatment regimen
Dear Karen and TerryH,
Thank you very much for your response. Yes, it does look very similar and in the context of my sister’s story makes sense as a bridging therapy, in this case before transplant. I wonder what difference a replacement of one agent makes and what would be the rationale in choosing one over the other.
The EDAP regimen is proving to be quite brutal and my sister was told she would have ‘many’ rounds. This is very anxiety-provoking for all of us. My sister is having a lot of potentially dangerous side effects: high blood-pressure, heart arrhythmia, kidney and stomach problems, severe drop in platelets, leukocytes and hemoglobin counts. They are saying it is to be expected and she is scheduled to spend two weeks in hospital to counter those.
We are obviously concerned how and whether she is going to tolerate several rounds of that and if she will be fit enough to have a transplant. She is very keen on the transplant and is terrified at the thought of being refused (as happened to some of her fellow sufferers).
On the bright side, her plasmacytomas are softening to touch, so something is happening to them as a result of this treatment.
Thank you very much for your response. Yes, it does look very similar and in the context of my sister’s story makes sense as a bridging therapy, in this case before transplant. I wonder what difference a replacement of one agent makes and what would be the rationale in choosing one over the other.
The EDAP regimen is proving to be quite brutal and my sister was told she would have ‘many’ rounds. This is very anxiety-provoking for all of us. My sister is having a lot of potentially dangerous side effects: high blood-pressure, heart arrhythmia, kidney and stomach problems, severe drop in platelets, leukocytes and hemoglobin counts. They are saying it is to be expected and she is scheduled to spend two weeks in hospital to counter those.
We are obviously concerned how and whether she is going to tolerate several rounds of that and if she will be fit enough to have a transplant. She is very keen on the transplant and is terrified at the thought of being refused (as happened to some of her fellow sufferers).
On the bright side, her plasmacytomas are softening to touch, so something is happening to them as a result of this treatment.
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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
4 posts
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