My father has had 1 cycle – about 5 once-a-week treatments – of CyBorD (cyclophosphamide, Velcade, and dexamethasone), and his numbers have slightly gone up since diagnosis. He feels a ton better though.
His M-spike has gone up from 2.86 to 3.03 g/dl (28.6 to 30.3 g/l).
His lambda light chain level has gone from 1299 to 1690.
His kappa light chain level has gone from 1.52 to 1.60.
His oncologist suggests that we do one more cycle before making a decision.
Is this a common approach? Could his numbers start to drop after this slight increase?
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Re: CyBorD not working after 1 cycle
Hi,
My hubby started cyclophosphamide, Velcade, and dexamethasone (CyBorD) last April 2016 and luckily went into remission after one cycle, although the doctor has him completing nine five-week cycles, which will end in February. I don't know what your doctor is telling you. I thought I would share my knowledge as you must be terribly concerned about this.
I have done a lot of research and I learned that many patients don't respond until 3-4 cycles. My husband's quick response is only experienced by 5% of patients. Perhaps your doctor has now given you some feedback on what to expect. It is all so confusing and scary. I have read that even with a quick response, it doesn't necessarily mean the progression-free period is any longer than someone who takes longer to respond. Each person is unique.
I hope that helps. I had to do a lot of research just to be satisfied that CyBorD was a good protocol, as in the U.S. it is not used as frequently now as it once was. At any rate, I am sure your doctor has a second line protocol should this not work for your husband.
All the very best,
Lynda
My hubby started cyclophosphamide, Velcade, and dexamethasone (CyBorD) last April 2016 and luckily went into remission after one cycle, although the doctor has him completing nine five-week cycles, which will end in February. I don't know what your doctor is telling you. I thought I would share my knowledge as you must be terribly concerned about this.
I have done a lot of research and I learned that many patients don't respond until 3-4 cycles. My husband's quick response is only experienced by 5% of patients. Perhaps your doctor has now given you some feedback on what to expect. It is all so confusing and scary. I have read that even with a quick response, it doesn't necessarily mean the progression-free period is any longer than someone who takes longer to respond. Each person is unique.
I hope that helps. I had to do a lot of research just to be satisfied that CyBorD was a good protocol, as in the U.S. it is not used as frequently now as it once was. At any rate, I am sure your doctor has a second line protocol should this not work for your husband.
All the very best,
Lynda
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: CyBorD not working after 1 cycle
Hi lyynda,
Thank you so much for your post.
It seems like as long as it's "stable" early on it's not much of a concern.It's just bizarre that he feels a whole lot better from a month ago but yet his labs don't reflect that.
We hope to see some improvements in the coming month.
Thank you so much for your post.
It seems like as long as it's "stable" early on it's not much of a concern.It's just bizarre that he feels a whole lot better from a month ago but yet his labs don't reflect that.
We hope to see some improvements in the coming month.
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
Re: CyBorD not working after 1 cycle
If your husband is feeling better even though the labs aren't showing improvement yet, then I would bet that the regimen is working at some level and will begin to show with improved labs. One round of therapy is really a short period of time to see improvement. But, I bet it will happen. I wouldn't worry just yet (even though I know that's hard). Have faith in what your oncologist is recommending.
All the best,
Nancy in Phila
All the best,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: CyBorD not working after 1 cycle
Thank you Nancy,
I sure hope it's doing something. Appreciate the kind words.
It seems like for the majority it takes a good 4 rounds, but we shall see.
I sure hope it's doing something. Appreciate the kind words.
It seems like for the majority it takes a good 4 rounds, but we shall see.
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
Re: CyBorD not working after 1 cycle
My husband did cyclophosphamide, Velcade, and dexamethasone (CyBorD) for induction, and it took two cycles for the numbers to budge downward. By the fourth cycle, he was on the right track, and after seven cycles, he was in remission before his stem cell transplant in August 2015. He is now on maintenance therapy with Velcade every 2 weeks, Zometa monthly.
Wishing your Dad good luck with this regimen!
Wishing your Dad good luck with this regimen!
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
Re: CyBorD not working after 1 cycle
HI ByYourSide,
Thank you for the reply. My father just completed his second cycle and we are waiting for his myeloma markers to post. (The wait period is really tough.) At this point, he seems to be doing better and just has the side affects from the induction. We are hoping for exactly what you described.
Wishing you and your husband success in the coming year!
Thank you for the reply. My father just completed his second cycle and we are waiting for his myeloma markers to post. (The wait period is really tough.) At this point, he seems to be doing better and just has the side affects from the induction. We are hoping for exactly what you described.
Wishing you and your husband success in the coming year!
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
Re: CyBorD not working after 1 cycle
Update after Cycle # 2
So his M-spike has gone up from 3.03 to 3.71 g/dl (30.3 to 37.1 g/l).
His light chains are still pending, but i assume those probably have not improved.
We have an appointment to see his doctor after he completes his 3rd cycle.
So once again a bit discouraged that his numbers are not improving.
His rib pain, which was severe during diagnosis, is virtually gone now, which is bizarre. Like he feels much better, but the numbers do not reflect that at all.
On to cycle # 3. Will keep everyone posted.
So his M-spike has gone up from 3.03 to 3.71 g/dl (30.3 to 37.1 g/l).
His light chains are still pending, but i assume those probably have not improved.
We have an appointment to see his doctor after he completes his 3rd cycle.
So once again a bit discouraged that his numbers are not improving.
His rib pain, which was severe during diagnosis, is virtually gone now, which is bizarre. Like he feels much better, but the numbers do not reflect that at all.
On to cycle # 3. Will keep everyone posted.
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
Re: CyBorD not working after 1 cycle
Hi Nowwhat,
I am sorry to hear that your Dad’s M-spike numbers are not responding to his CyBorD (cyclophosphamide, Velcade, and dexamethasone) treatment. That must be very disappointing for you.
I am just about to start cycle 6 of my own CyBorD treatment. In my case I had good response after cycle 1. However, I can remember being initially told that I would be switched to another treatment regimen if I did not get an adequate response to CyBorD. (I use the word adequate in a non-technical sense.) From the outset, I did not know exactly what response I should be hoping for. In retrospect, I wish more specific information on the efficacy of my treatment was readily available.
I can also remember the anxiety I felt when I waited for the results of my first blood tests post cycle 1. It is a big moment for all of us on treatments.
Does your Dad have any abnormal cytogenetics that might explain a delayed response? In my case, I have an IgA (kappa) myeloma with the translocation t(4;14). My form of myeloma does not respond well to all myeloma treatments. I think there are subtle variations in myeloma that evolve over time as abnormal plasma cells undergo genetic drift. This is one of the reasons why it is difficult to find a cure for myeloma.
Best of luck to you and your Dad,
Joe
I am sorry to hear that your Dad’s M-spike numbers are not responding to his CyBorD (cyclophosphamide, Velcade, and dexamethasone) treatment. That must be very disappointing for you.
I am just about to start cycle 6 of my own CyBorD treatment. In my case I had good response after cycle 1. However, I can remember being initially told that I would be switched to another treatment regimen if I did not get an adequate response to CyBorD. (I use the word adequate in a non-technical sense.) From the outset, I did not know exactly what response I should be hoping for. In retrospect, I wish more specific information on the efficacy of my treatment was readily available.
I can also remember the anxiety I felt when I waited for the results of my first blood tests post cycle 1. It is a big moment for all of us on treatments.
Does your Dad have any abnormal cytogenetics that might explain a delayed response? In my case, I have an IgA (kappa) myeloma with the translocation t(4;14). My form of myeloma does not respond well to all myeloma treatments. I think there are subtle variations in myeloma that evolve over time as abnormal plasma cells undergo genetic drift. This is one of the reasons why it is difficult to find a cure for myeloma.
Best of luck to you and your Dad,
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: CyBorD not working after 1 cycle
Update:
Father ended up in the hospital with high calcium. Clearly this regimen is not working for him.
What's upsetting is that he comes in every Friday for treatment and labs, yet his calcium levels went unnoticed until he had symptoms.
Pretty upset at the moment. I'm sitting here bedside while he's asleep.
Tomorrow they will have to check his lungs as they see some slight pneumonia / infection.
The doctor is planning on switching to Kyprolis, Revlimid, and dexamethasone (KRD). Twice a week IV treatments.
At this point, we just need him to show some type of improvement.
Thanks all.
Father ended up in the hospital with high calcium. Clearly this regimen is not working for him.
What's upsetting is that he comes in every Friday for treatment and labs, yet his calcium levels went unnoticed until he had symptoms.
Pretty upset at the moment. I'm sitting here bedside while he's asleep.
Tomorrow they will have to check his lungs as they see some slight pneumonia / infection.
The doctor is planning on switching to Kyprolis, Revlimid, and dexamethasone (KRD). Twice a week IV treatments.
At this point, we just need him to show some type of improvement.
Thanks all.
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nowwhat - Who do you know with myeloma?: dad
- When were you/they diagnosed?: 2016
- Age at diagnosis: 64
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