Hi all,
My name is Col from England, I am a keen sportsman, 60 years old, married, and with 2 daughters. I have already found it helpful to read your posts
I have just been diagnosed with stage 1 multiple myeloma, and need to start treatment next week. I need to make a decision by Tuesday whether to go for standard treatment -- Velcade, thalidomide, dexamethasone (VTD) + autologous stem cell transplant (ASCT) upfront -- or clinical trial Kyprolis (carfilzomib) / cyclophosphamide / dexamethasone (KCD or CCD) with maintenance of Kyprolis for 18 months, but with random selection of upfront or delayed ASCT.
I am leaning towards the trial because Kyprolis seems to be the future of first line treatment, but any views to help best decide would be most appreciated
With many thanks,
Col
Forums
6 posts
• Page 1 of 1
Re: Kyprolis, cyclophosphamide, dexamethasone trial?
There will be a lot of opinions here, but a little more information will be helpful. Have you had the FISH cytogenics testing? Do you know if you are considered standard or high risk? What, if any symtoms do you have?
I am currently being treated with Kyprolis, Pomalyst and dex and I've responded well. I did not respond well to 3 cycles of Velcade, Revlimid and dex. I'm a high risk patient so an upfront ASCT is called for and my doctor discouraged a trial that could randomly delay the transplant for me. I think if you are standard risk and otherwise in good basic health the trial may be the right choice for you.
I am currently being treated with Kyprolis, Pomalyst and dex and I've responded well. I did not respond well to 3 cycles of Velcade, Revlimid and dex. I'm a high risk patient so an upfront ASCT is called for and my doctor discouraged a trial that could randomly delay the transplant for me. I think if you are standard risk and otherwise in good basic health the trial may be the right choice for you.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Kyprolis, cyclophosphamide, dexamethasone trial?
Hello Colinpates,
I have just successfully completed chemotherapy with Kyprolis, cyclophosphamide, and dexamethasone, achieving a complete response, and am now on Kyprolis maintenance.
When diagnosed (about a year ago, at age 65) I was at Stage 3, with a 90% rate of malignancy of my plasma cells. I also had deletion 13q and lgH translocation 11:14. To sum it all up, I was diagnosed as intermediate to high risk.
I had great qualms about an autologous transplant, and so decided against that. At first I was treated with Revlimid and prednisone, which worked for a short time. Then subcutaneous Velcade and dexamethasone was tried, to no effect whatsoever.
But I responded very well to Kyprolis, cyclophosphamide and dexamethasone and my free light chains (I have kappa light chain myeloma) are now within the normal range.
So CCD worked wonders for me.
Good luck on your decision!
I have just successfully completed chemotherapy with Kyprolis, cyclophosphamide, and dexamethasone, achieving a complete response, and am now on Kyprolis maintenance.
When diagnosed (about a year ago, at age 65) I was at Stage 3, with a 90% rate of malignancy of my plasma cells. I also had deletion 13q and lgH translocation 11:14. To sum it all up, I was diagnosed as intermediate to high risk.
I had great qualms about an autologous transplant, and so decided against that. At first I was treated with Revlimid and prednisone, which worked for a short time. Then subcutaneous Velcade and dexamethasone was tried, to no effect whatsoever.
But I responded very well to Kyprolis, cyclophosphamide and dexamethasone and my free light chains (I have kappa light chain myeloma) are now within the normal range.
So CCD worked wonders for me.
Good luck on your decision!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Kyprolis, cyclophosphamide, dexamethasone trial?
Good morning, Colin:
You should look into the side effect profile of Kyprolis. It is potentially worse than its alternative (Velcade) with respect to certain heart and lung problems. So if you have serious existing heart and lung conditions, Kyprolis probably could be problematic. I have read that some people are also susceptible to blood clots, so it will need at least aspirin or maybe one of the stronger anticoagulants.
Overall, however, the side effect profile of Kyprolis seems to compare favorably to Velcade, particularly with respect to peripheral neuropathy, which Kyprolis seems to have only minimally.
In studies so far, Kyprolis has been shown to be more active, and for the "average" person, responses are quicker and deeper.
Good luck to you. Regards, JPC
You should look into the side effect profile of Kyprolis. It is potentially worse than its alternative (Velcade) with respect to certain heart and lung problems. So if you have serious existing heart and lung conditions, Kyprolis probably could be problematic. I have read that some people are also susceptible to blood clots, so it will need at least aspirin or maybe one of the stronger anticoagulants.
Overall, however, the side effect profile of Kyprolis seems to compare favorably to Velcade, particularly with respect to peripheral neuropathy, which Kyprolis seems to have only minimally.
In studies so far, Kyprolis has been shown to be more active, and for the "average" person, responses are quicker and deeper.
Good luck to you. Regards, JPC
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JPC - Name: JPC
Re: Kyprolis, cyclophosphamide, dexamethasone trial?
Hi Colin, and welcome to the forum. I think that you have received helpful comments so far.
On the topic of side effects, thalidomide can cause peripheral neuropathy (PN), as can Velcade. Would the Velcade be administered by subcutaneous injection, or by IV? Hopefully it would be by sub-Q, since that causes less of neuropathy. PN can effect the quality of life for patients. Could you discuss this with your doctor, who has probably seen many myeloma patients?
Hope all goes well with you.
On the topic of side effects, thalidomide can cause peripheral neuropathy (PN), as can Velcade. Would the Velcade be administered by subcutaneous injection, or by IV? Hopefully it would be by sub-Q, since that causes less of neuropathy. PN can effect the quality of life for patients. Could you discuss this with your doctor, who has probably seen many myeloma patients?
Hope all goes well with you.
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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: Kyprolis, cyclophosphamide, dexamethasone trial?
So Col, what treatment regimen did you choose?
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Joe H - Name: Joe H
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov 2015
- Age at diagnosis: 50
6 posts
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