It's been six weeks since my husbands diagnosis. He is on the CyBorD (cyclophosphamide, bortezomib [Velcade], and dexamethasone) treatment regimen.
We finished treatment 7 (or I guess Cycle 2 Round 3, or Round 2 Cycle 3?) this Wednesday.
He has been complaining about back pain a lot the past week and a half, to the point where he took Tylenol 1. This man hates pain medications, so it much be far worse than he's letting on.
His doctor seemed pleased with his response to the medication after the first 4 weeks of treatment.
His hemoglobin went up from 90 to 107, his keratin level went from 122 to 135, his calcium was in normal range, and his immunoglobulin was at 12 and went down to 2.73.
We do the new blood work next Tuesday and find out a week later where we are at.
The numbers don't mean much to me. I get it's going up, and down, respectively and that's a good thing, but is it enough? Does it mean it's working?
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JackieO - Name: JackieO
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: May 2, 2018
- Age at diagnosis: 53
Re: Is the CyBorD treatment working?
Hi JackieO,
I've had 5 circles of CyBorD as my initial treatment after I have been diagnosed. It was working for me and got my numbers to a normal range (except lower than normal immunoglobulins, which is common for many of patients).
Of course, everyone is different, and you and your husband's hematologist should monitor the labs carefully.
Let me please give you advice. If, as you mentioned, the numbers don't mean much for you, I believe you need to educate yourself to understand your husband's labs, at least on a basic level. This forum, by the way, provides great possibility for that. Also, ask questions to your doctor, as many as you need to get understanding. Doctors give us their recommendations, but all decisions are up to us.
Best wishes!
I've had 5 circles of CyBorD as my initial treatment after I have been diagnosed. It was working for me and got my numbers to a normal range (except lower than normal immunoglobulins, which is common for many of patients).
Of course, everyone is different, and you and your husband's hematologist should monitor the labs carefully.
Let me please give you advice. If, as you mentioned, the numbers don't mean much for you, I believe you need to educate yourself to understand your husband's labs, at least on a basic level. This forum, by the way, provides great possibility for that. Also, ask questions to your doctor, as many as you need to get understanding. Doctors give us their recommendations, but all decisions are up to us.
Best wishes!
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Is the CyBorD treatment working?
I guess I wasn’t clear. I understand the numbers in terms of what’s normal range, etc.
What I want to know is more along the lines of “Generally speaking, 30% of patients see their numbers go up X amount after this cycle,” etc., a measuring stick against others if you will to know if it’s it just working, which obviously it is if his numbers are improving, but how that rates overall. Maybe a 10 mg improvement is aces in terms of response, but maybe it’s ok but not what we are looking for to qualify it as a successful strategy.
Does that clarify what I meant?
I can see he’s progressing and improving, I just want a roadmap to know how far we should be, on average.
What I want to know is more along the lines of “Generally speaking, 30% of patients see their numbers go up X amount after this cycle,” etc., a measuring stick against others if you will to know if it’s it just working, which obviously it is if his numbers are improving, but how that rates overall. Maybe a 10 mg improvement is aces in terms of response, but maybe it’s ok but not what we are looking for to qualify it as a successful strategy.
Does that clarify what I meant?
I can see he’s progressing and improving, I just want a roadmap to know how far we should be, on average.
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JackieO - Name: JackieO
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: May 2, 2018
- Age at diagnosis: 53
Re: Is the CyBorD treatment working?
Hi Jackie,
Sorry to hear about your husband's recent diagnosis.
In order to understand how well your husband is responding to the treatment, we need to know more information about his disease.
What kind of myeloma is his? Have your doctor ever mentioned the word M-spike? (I'm guessing the immunoglobulin value of 12 was indeed the M-spike, but correct me if I'm wrong.)
If it is the case, the M-spike is a measure of your husband's myeloma progression. In general, the doctor wants that number to go as low as zero, or at least near zero but not progressing in consecutive blood test.
So to answer your question incompletely, yes, your husband's disease is responding to the CyBorD concoction. His numbers are going to the normal directions (except for his creatinine, the higher the worse). As he has only completed close to 2 cycles (1 cycle is 28-day period, or usually 4 times Velcade weekly injection), you may expect the second time his numbers are tested, it should come down even more.
In the longer term, if after a few cycles (ask your doctor for the number of cycles) of induction treatment his myeloma markers are back to normal, then he is considered to be in remission. Then the doctor may or may not put him in a maintenance regimen to control his myeloma.
Eventually all myeloma patients will relapse, and when it happens, a new line of treatment would be prescribed.
But to answer the average roadmap, it would be impossible without knowing more information about his disease.
Has he done any FISH test? Any other immunoglobin results?
I hope this helps.
Sorry to hear about your husband's recent diagnosis.
In order to understand how well your husband is responding to the treatment, we need to know more information about his disease.
What kind of myeloma is his? Have your doctor ever mentioned the word M-spike? (I'm guessing the immunoglobulin value of 12 was indeed the M-spike, but correct me if I'm wrong.)
If it is the case, the M-spike is a measure of your husband's myeloma progression. In general, the doctor wants that number to go as low as zero, or at least near zero but not progressing in consecutive blood test.
So to answer your question incompletely, yes, your husband's disease is responding to the CyBorD concoction. His numbers are going to the normal directions (except for his creatinine, the higher the worse). As he has only completed close to 2 cycles (1 cycle is 28-day period, or usually 4 times Velcade weekly injection), you may expect the second time his numbers are tested, it should come down even more.
In the longer term, if after a few cycles (ask your doctor for the number of cycles) of induction treatment his myeloma markers are back to normal, then he is considered to be in remission. Then the doctor may or may not put him in a maintenance regimen to control his myeloma.
Eventually all myeloma patients will relapse, and when it happens, a new line of treatment would be prescribed.
But to answer the average roadmap, it would be impossible without knowing more information about his disease.
Has he done any FISH test? Any other immunoglobin results?
I hope this helps.
Re: Is the CyBorD treatment working?
Our doctor, when we see him, only says if the hemoglobin has gone up or down, if the protein levels are lower or not, and if our immunoglobulin is up or down.
Last Wednesday we went for Day 1, Round 3 treatment and to get the results from Round 2 bloodwork which was taken on Day 22, Round 2, right before he got his medicine.
Doctor said his protein, which was 78 before treatment began, was now at 17.6 and "very nicely down." He said the chain was normal, keratin normal, and calcium normal.
Then he said that with the results he was an appropriate case for the transplant group and that he would refer us to them.
He expects us to hear from them within the month for an initial appointment and from there we will see. In the meantime we continue treatment while we wait for them to get in touch.
My husband is overjoyed with the results. I am too, but cautiously so, as I have read up on transplants and know that there are a lot of bumps on the road ahead before we know for sure.
Doctor also tried to blanket the excitement, noting that it's not a cure, but a possibility for a longer life, and that there was no guarantee that it would work, or that it would extend his life longer, but it was a better chance then CyBorD alone.
I know I should be happier, but honestly just so worried.
Last Wednesday we went for Day 1, Round 3 treatment and to get the results from Round 2 bloodwork which was taken on Day 22, Round 2, right before he got his medicine.
Doctor said his protein, which was 78 before treatment began, was now at 17.6 and "very nicely down." He said the chain was normal, keratin normal, and calcium normal.
Then he said that with the results he was an appropriate case for the transplant group and that he would refer us to them.
He expects us to hear from them within the month for an initial appointment and from there we will see. In the meantime we continue treatment while we wait for them to get in touch.
My husband is overjoyed with the results. I am too, but cautiously so, as I have read up on transplants and know that there are a lot of bumps on the road ahead before we know for sure.
Doctor also tried to blanket the excitement, noting that it's not a cure, but a possibility for a longer life, and that there was no guarantee that it would work, or that it would extend his life longer, but it was a better chance then CyBorD alone.
I know I should be happier, but honestly just so worried.
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JackieO - Name: JackieO
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: May 2, 2018
- Age at diagnosis: 53
Re: Is the CyBorD treatment working?
Hello Jackie,
I am glad to hear that your husband is responding well to the CyBorD treatments. You should be able to ask for copies of your lab results, so that you can look at the progress also at home. I have lab reports going back to 2009 now, although not every single one. Now my doctor's nurses always give me a print-out of those.
I think that your husband is right to be really happy about getting a protein value fall by 78%. Hopefully it will fall even further, and when this happened for me (from a value of 56 g/l in July 2009 at diagnosis down to 3 by November, after the induction therapy), I also felt much better. The tumour burden was lessened and I could feel that the cancer had been dragging me down physically. So perhaps his mood reflects that too.
At the time I thought that probably that was a 'cure' for me and had to be talked into having a stem cell transplant. I don't regret having the transplant, even though it wasn't easy to get through, since I think that it helped me to keep the myeloma disease controlled.
At the time of my induction treatment, it was Velcade and dex. Times have changed, and I think that nowadays it would be CyBorD, though. Good luck with everything going forward.
I am glad to hear that your husband is responding well to the CyBorD treatments. You should be able to ask for copies of your lab results, so that you can look at the progress also at home. I have lab reports going back to 2009 now, although not every single one. Now my doctor's nurses always give me a print-out of those.
I think that your husband is right to be really happy about getting a protein value fall by 78%. Hopefully it will fall even further, and when this happened for me (from a value of 56 g/l in July 2009 at diagnosis down to 3 by November, after the induction therapy), I also felt much better. The tumour burden was lessened and I could feel that the cancer had been dragging me down physically. So perhaps his mood reflects that too.
At the time I thought that probably that was a 'cure' for me and had to be talked into having a stem cell transplant. I don't regret having the transplant, even though it wasn't easy to get through, since I think that it helped me to keep the myeloma disease controlled.
At the time of my induction treatment, it was Velcade and dex. Times have changed, and I think that nowadays it would be CyBorD, though. Good luck with everything going forward.
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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: Is the CyBorD treatment working?
JackieO,
Your husband's situation sounds much like mine was, but running 6 months behind me. I had CyBorD induction, which drove my numbers down quickly like his did. My bone marrow biopsy back in March, after the numbers were normal, showed no abnormal cells. I just completed my auto stem cell transplant about three weeks ago. I am home and feeling pretty close to normal. Just some mild fatigue and occasional mild indigestion.
You should be very happy about his progress and what the stem cell transplant can do. As everyone will tell you, it's no cure, and the transplant process is no one's idea of fun, but it's not awful and it does extend his time cancer-free. And every year you buy with current treatment is one more year during which the next breakthrough, and perhaps a cure, might come.
So I know it's hard to be happy, but you both should be as he's doing great. There's lots of folks on this forum who have been through exactly what he's going through and have lived good long lives afterward.
When I got diagnosed, like everyone else, I asked "Why me?" But now, as I think about how well I'm doing and how many medical options there are and what my future looks like, I think "Why NOT me?" Why can't I be someone who lives a good long life even as I battle this disease?
Good luck to you both.
Your husband's situation sounds much like mine was, but running 6 months behind me. I had CyBorD induction, which drove my numbers down quickly like his did. My bone marrow biopsy back in March, after the numbers were normal, showed no abnormal cells. I just completed my auto stem cell transplant about three weeks ago. I am home and feeling pretty close to normal. Just some mild fatigue and occasional mild indigestion.
You should be very happy about his progress and what the stem cell transplant can do. As everyone will tell you, it's no cure, and the transplant process is no one's idea of fun, but it's not awful and it does extend his time cancer-free. And every year you buy with current treatment is one more year during which the next breakthrough, and perhaps a cure, might come.
So I know it's hard to be happy, but you both should be as he's doing great. There's lots of folks on this forum who have been through exactly what he's going through and have lived good long lives afterward.
When I got diagnosed, like everyone else, I asked "Why me?" But now, as I think about how well I'm doing and how many medical options there are and what my future looks like, I think "Why NOT me?" Why can't I be someone who lives a good long life even as I battle this disease?
Good luck to you both.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
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