I relapsed before my 90-day check-up for my autologous stem cell transplant. I was feeling tired but thought it was because I had returned to work. Transplant was done February 2, 2016 at Moffitt in Tampa, Florida. I went back to work in early April. I had my 90-day check-up in early May, received a phone call from my myeloma specialist at Moffitt saying that the bloodwork did not look good, and was scheduled for a bone marrow biopsy. Biopsy confirmed that the cancer has returned. Prior to transplant, I had achieved a complete response (CR) on cyclophosphamide, Velcade and dexamethasone.
I had started treatment with Kyprolis, had a reaction of tumor lysis, and ended up in the hospital. I went back to the myeloma specialist at Moffitt and was told that my cancer is very aggressive, and that I should do DCEP (dexamethasone, cyclophosphamide, etoposide and cisplatin) as treatment.
I have completed the first cycle of this, and have gone through 2 and 1/2 weeks of having CBC every other day and getting platelets or blood (sometimes both) every other day. My bone marrow seems to be making blood cells now, so not as many trips to the doctor. I live in the Sarasota, Florida area, so I see my local oncologist / hematologist when I am home.
I return to Moffitt on July 15th for re-evaluation. The treatment with DCEP is done in 2 parts, so I am anticipating going through all of it again. I also want to find out what the next step is.
I have been looking through the forum for anyone with information on DCEP, but so far I have not seen much about this treatment.
Does anyone have additional information about what to expect from the treatment? Is it successful often? What sort of side effects are there?
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JaniceT - Name: Janice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 60
Re: DCEP for multiple myeloma- what to expect?
Hi Janice,
Sorry to hear that your transplant didn't have that much of an effect on your multiple myeloma.
I don't have any experience with the DCEP regimen, but I do have a one question and one observation that may be helpful.
My question is this. I have the impression that DCEP typically is used as a "bridging" therapy. It's given for a while to beat back the disease before the patient is given some other treatment. Do you know if that is what its purpose is in your case and, if so, what you will be given after the DCEP?
Often the treatment that follows DCEP is high-dose melphalan followed by an autologous stem cell transplant. But maybe something else is planned in your case.
My observation is that perhaps a treatment regimen including Kyprolis is planned for after the DCEP. If not, perhaps it should be considered.
You say that Kyprolis caused you to experience a severe case of tumor lysis syndrome (TLS). My understanding of TLS is that it occurs when a drug is so effective against a cancer that it causes dead cancer cells to flood the bloodstream, overwhelming the kidneys. This can be dangerous, for sure. However, to me, it also seems to be a sign that the treatment that caused the TLS is VERY effective.
So I wonder if your doctors are planning to try Kyprolis again ... or if perhaps they should be planning to try it again. I would hate to see your doctors abandoning a treatment that apparently works well against your myeloma. In general, you never want to give up too soon on a myeloma therapy, since a big part of extending survival with myeloma is about making sure you use all possible myeloma therapies to their fullest extent possible.
Sorry to hear that your transplant didn't have that much of an effect on your multiple myeloma.
I don't have any experience with the DCEP regimen, but I do have a one question and one observation that may be helpful.
My question is this. I have the impression that DCEP typically is used as a "bridging" therapy. It's given for a while to beat back the disease before the patient is given some other treatment. Do you know if that is what its purpose is in your case and, if so, what you will be given after the DCEP?
Often the treatment that follows DCEP is high-dose melphalan followed by an autologous stem cell transplant. But maybe something else is planned in your case.
My observation is that perhaps a treatment regimen including Kyprolis is planned for after the DCEP. If not, perhaps it should be considered.
You say that Kyprolis caused you to experience a severe case of tumor lysis syndrome (TLS). My understanding of TLS is that it occurs when a drug is so effective against a cancer that it causes dead cancer cells to flood the bloodstream, overwhelming the kidneys. This can be dangerous, for sure. However, to me, it also seems to be a sign that the treatment that caused the TLS is VERY effective.
So I wonder if your doctors are planning to try Kyprolis again ... or if perhaps they should be planning to try it again. I would hate to see your doctors abandoning a treatment that apparently works well against your myeloma. In general, you never want to give up too soon on a myeloma therapy, since a big part of extending survival with myeloma is about making sure you use all possible myeloma therapies to their fullest extent possible.
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Jonah
Re: DCEP for multiple myeloma- what to expect?
Jonah,
Yes, the DCEP is to get the disease slowed down, and then move on to other treatment. I see my local oncologist tomorrow (July 12, 2016) and then go to Moffitt this Friday. So I should have an idea of what the next treatment will be.
Yes, the DCEP is to get the disease slowed down, and then move on to other treatment. I see my local oncologist tomorrow (July 12, 2016) and then go to Moffitt this Friday. So I should have an idea of what the next treatment will be.
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JaniceT - Name: Janice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 60
Re: DCEP for multiple myeloma- what to expect?
I wrote earlier that after her relapse my sister was going to have a cisplatin-based chemo. The decision was finally made and she has had one cycle of DCEP to get her back to remission or to stabilize her disease.
The treatment was inpatient and she spent about three weeks in hospital, first in reparation and for tests, then 4 days of chemo, then some treatments to counter side effects, mostly low WBC and also she had a profuse bleeding from the infusion catheter when it was removed. That was a major setback, and after losing a lot of blood, she needed blood transfusion and extra platelets transfusions. She also received two Neupogen shots to increase her WBC.
She generally felt find throughout the infusion days, just became unwell because of the bleeding. She felt a bit nauseous, but other than that it was much better tolerated than the EDAP regimen that she had prior to her transplant.
She is now recovering at home and will be going back for another round on the 19th of March.
She feels OK, but said that her muscles are completely gone and she looks anorexic, even though she has good appetite. I am a bit concerned about this, as before she has never lost much weight through her treatments. She had long hospital stays before also, e.g. for the transplant, but did not lose as much muscle mass as this time.
On the bright side, her bone pain has gone, as did a small plasmacytoma she had on her chest. She did not have any further tests yet to check her myeloma status yet.
The treatment was inpatient and she spent about three weeks in hospital, first in reparation and for tests, then 4 days of chemo, then some treatments to counter side effects, mostly low WBC and also she had a profuse bleeding from the infusion catheter when it was removed. That was a major setback, and after losing a lot of blood, she needed blood transfusion and extra platelets transfusions. She also received two Neupogen shots to increase her WBC.
She generally felt find throughout the infusion days, just became unwell because of the bleeding. She felt a bit nauseous, but other than that it was much better tolerated than the EDAP regimen that she had prior to her transplant.
She is now recovering at home and will be going back for another round on the 19th of March.
She feels OK, but said that her muscles are completely gone and she looks anorexic, even though she has good appetite. I am a bit concerned about this, as before she has never lost much weight through her treatments. She had long hospital stays before also, e.g. for the transplant, but did not lose as much muscle mass as this time.
On the bright side, her bone pain has gone, as did a small plasmacytoma she had on her chest. She did not have any further tests yet to check her myeloma status yet.
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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
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