And here is my biggest question:
Why did they wait until a month later to tell my husband that he relapsed?
Unforgivable that a patient should have such a significant relapse and a doctor thinks it's acceptable to take their time getting a patient back on track!
Forums
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Stage at relapse & frequency of free light chain tests
LauraB wrote:
I went into remission on my 4th cycle. Treatment continued for a further 5 cycles. The reason was to deepen the response, i.e., lengthen the period of remission.
What is most distressing is that following his CR last September, he was given two additional cycles of VRD even though there was no measurable M-spike and his kappa-lambda ratio was normal and his IgA went to normal.
I went into remission on my 4th cycle. Treatment continued for a further 5 cycles. The reason was to deepen the response, i.e., lengthen the period of remission.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Stage at relapse & frequency of free light chain tests
Sorry, I should have communicated that better.
Yes, I do understand the additional cycles were to deepen his response. We agreed that was an excellent approach, especially since he decided not to undergo the ASCT.
What I meant: I was distressed because he relapsed in spite of having additional cycles on top of an already excellent response, which made the lack of monitoring even more frustrating because it would have been avoided and my husband should have enjoyed a much longer first remission.
Having normal cytogenetics, extra treatments to deepen a response, no plasmacytomas, no liver or renal involvement, no side effects from VRD, next-to-normal CBC's (just barely under normal for heme - not even technically considered anemic), and BAM!
All that goes out the window because a doc "forgot" to monitor free light chain levels and M-spike?
Yes, I do understand the additional cycles were to deepen his response. We agreed that was an excellent approach, especially since he decided not to undergo the ASCT.
What I meant: I was distressed because he relapsed in spite of having additional cycles on top of an already excellent response, which made the lack of monitoring even more frustrating because it would have been avoided and my husband should have enjoyed a much longer first remission.
Having normal cytogenetics, extra treatments to deepen a response, no plasmacytomas, no liver or renal involvement, no side effects from VRD, next-to-normal CBC's (just barely under normal for heme - not even technically considered anemic), and BAM!
All that goes out the window because a doc "forgot" to monitor free light chain levels and M-spike?

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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Stage at relapse & frequency of free light chain tests
Laura,
Relapsing means end of remission. Closer monitoring may have resulted in discovery of the relapse sooner, but I don't see how it could have prevented the relapse happening whenever it did happen.
Relapsing means end of remission. Closer monitoring may have resulted in discovery of the relapse sooner, but I don't see how it could have prevented the relapse happening whenever it did happen.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Stage at relapse & frequency of free light chain tests
I'm not quite sure you understand clearly how relapse occurs or how monitoring or medication management can ultimately affect successful management of a disease.
Waiting six months to test a patient for elevated free light chains and then waiting another month after you realize he's had a full blown relapse with significant progression of disease is, by international standards of clinical practice set by the International Myeloma Working Group, nothing short of plain ol' neglect.
Again, response was perfect. Health perfect. Cytogenetics as good as it gets: Plain IgA with no abnormal cytogenetics. Fantastic pre-disease health status. No side effects from the RVD. Immediate response.
The only unknown: Velcade was doing all the work for him. Not the Revlimid.
We would have known that if only she tested. Even just once. Instead, she waited from September to March before testing, then another month to let him know he was in relapse.
You can't excuse that away. You can try, but it doesn't fly.
Waiting six months to test a patient for elevated free light chains and then waiting another month after you realize he's had a full blown relapse with significant progression of disease is, by international standards of clinical practice set by the International Myeloma Working Group, nothing short of plain ol' neglect.
Again, response was perfect. Health perfect. Cytogenetics as good as it gets: Plain IgA with no abnormal cytogenetics. Fantastic pre-disease health status. No side effects from the RVD. Immediate response.
The only unknown: Velcade was doing all the work for him. Not the Revlimid.
We would have known that if only she tested. Even just once. Instead, she waited from September to March before testing, then another month to let him know he was in relapse.
You can't excuse that away. You can try, but it doesn't fly.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Stage at relapse & frequency of free light chain tests
As a side note, let me be clear about outcome here.
His main oncologist indicated that had he known about the Revlimid resistance in Month 1 after achieving remission, he would have put him on a different management protocol which would have prevented additional lesions as well as the liver plasmacytoma.
Had that happened, he would clearly still be in remission. Yeah, he'd relapse just like everyone does, but not because he was essentially going without ANY medication.
I'm posting not to argue about neglect vs. normal relapse.
I'm posting because, as it turns out, monitoring was neglected and whenever you fail to monitor a patient properly, damage occurs.
There were alternative ways to manage this that would have prevented the relapse.
I'm sorry to disagree, but his main doctor told me that. It would be good for you to know this, so you can also make sure your doc monitors you adequately.
His main oncologist indicated that had he known about the Revlimid resistance in Month 1 after achieving remission, he would have put him on a different management protocol which would have prevented additional lesions as well as the liver plasmacytoma.
Had that happened, he would clearly still be in remission. Yeah, he'd relapse just like everyone does, but not because he was essentially going without ANY medication.
I'm posting not to argue about neglect vs. normal relapse.
I'm posting because, as it turns out, monitoring was neglected and whenever you fail to monitor a patient properly, damage occurs.
There were alternative ways to manage this that would have prevented the relapse.
I'm sorry to disagree, but his main doctor told me that. It would be good for you to know this, so you can also make sure your doc monitors you adequately.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Stage at relapse & frequency of free light chain tests
Hi LauraB,
I fully agree with you. There was an inexplicable and inexcusable neglect in monitoring of your husband's myeloma. I am being monitored every 4 weeks and most other myeloma patients I know of are also monitored every 4 weeks. The relapse can occur anytime (some have gone for 15+ years without an ASCT and just on thalidomide+ dex) and a drug resistance can set in any time, too. The relapse can occur, even after an ASCT, as early as within 3 months after the ASCT, in some cases reported here on the Beacon. Such relapse must not go undetected and untreated for 6 months and allow the patient to suffer irreversible damage.
A completely healthy person should have a full physical every year and a closer (monthly) monitoring of any myeloma patient is a 'standard of care', to the best of my knowledge. Myeloma is only manageable, NOT curable, yet.
I hope your husband responds well to the alternative drug (replacing Revlimid), dex, and Velcade and he achieves the CR again and soon. Also, I hope his liver plasmacytoma and the new lesions, caused by this uncalled for relapse, are kept in check.
I fully agree with you. There was an inexplicable and inexcusable neglect in monitoring of your husband's myeloma. I am being monitored every 4 weeks and most other myeloma patients I know of are also monitored every 4 weeks. The relapse can occur anytime (some have gone for 15+ years without an ASCT and just on thalidomide+ dex) and a drug resistance can set in any time, too. The relapse can occur, even after an ASCT, as early as within 3 months after the ASCT, in some cases reported here on the Beacon. Such relapse must not go undetected and untreated for 6 months and allow the patient to suffer irreversible damage.
A completely healthy person should have a full physical every year and a closer (monthly) monitoring of any myeloma patient is a 'standard of care', to the best of my knowledge. Myeloma is only manageable, NOT curable, yet.
I hope your husband responds well to the alternative drug (replacing Revlimid), dex, and Velcade and he achieves the CR again and soon. Also, I hope his liver plasmacytoma and the new lesions, caused by this uncalled for relapse, are kept in check.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Stage at relapse & frequency of free light chain tests
Thanks much for the well wishes. We hope that he achieves CR again as well.
I think people should definitely understand that, although human errors do occur and, yes, sometimes a busy doc with a heavy caseload may overlook a healthier patient in lieu of much sicker patients, it's the right of a patient to have adequate care. Anyone with a chronic disease of any kind should be receiving adequate follow-up. It's absolutely necessary for proper management and a more successful outcome.
I think people should definitely understand that, although human errors do occur and, yes, sometimes a busy doc with a heavy caseload may overlook a healthier patient in lieu of much sicker patients, it's the right of a patient to have adequate care. Anyone with a chronic disease of any kind should be receiving adequate follow-up. It's absolutely necessary for proper management and a more successful outcome.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
Re: Stage at relapse & frequency of free light chain tests
O Laura,
No wonder you are shocked and angry. You have every right to be furious, not only with the doctor but with the staff at the lab and everyone else who made an assumption about your husband's recovery. I am glad that you are researching finding another physician and practice who will take your husband's myeloma more seriously.
I hate to say this since I am also in my 70s, but sometimes I wonder if once we pass that 60-year mark, we aren't taken as seriously. I have been exceedingly lucky in how I was diagnosed so early that I had and still have almost no CRAB symptoms. I was mildly anemic and it took a bone marrow aspiration and biopsy to officially diagnose my multiple myeloma. I was first diagnosed in January 2015 and still have no bone, blood or kidney involvement. I know that my situation is what it is because I had an exceptional primary care physician who was curious about why my anemia got a little worse with every blood draw. I am even luckier to have an oncologist in the same practice who specializes in blood cancers.
I'm not considered a candidate for a transplant at this time - we haven't even talked about it - but I have an oncologist who sees me 3 weeks out of every month when I get my Velcade and dex treatment. I have blood drawn at each of those visits. Usually it is only for a CBC but at least once a month my kappa and lambda light chains are checked.
I think from reading your postings and from some other postings I've seen, that some big transplant centers aren't as interested in following the successful patients as they should be. Yet multiple myeloma is an insidious disease, and even with a CR, bad things can happen.
I hope that your husband will find a much better oncologist who will be much more diligent in his care. You have my best wishes and prayers.
No wonder you are shocked and angry. You have every right to be furious, not only with the doctor but with the staff at the lab and everyone else who made an assumption about your husband's recovery. I am glad that you are researching finding another physician and practice who will take your husband's myeloma more seriously.
I hate to say this since I am also in my 70s, but sometimes I wonder if once we pass that 60-year mark, we aren't taken as seriously. I have been exceedingly lucky in how I was diagnosed so early that I had and still have almost no CRAB symptoms. I was mildly anemic and it took a bone marrow aspiration and biopsy to officially diagnose my multiple myeloma. I was first diagnosed in January 2015 and still have no bone, blood or kidney involvement. I know that my situation is what it is because I had an exceptional primary care physician who was curious about why my anemia got a little worse with every blood draw. I am even luckier to have an oncologist in the same practice who specializes in blood cancers.
I'm not considered a candidate for a transplant at this time - we haven't even talked about it - but I have an oncologist who sees me 3 weeks out of every month when I get my Velcade and dex treatment. I have blood drawn at each of those visits. Usually it is only for a CBC but at least once a month my kappa and lambda light chains are checked.
I think from reading your postings and from some other postings I've seen, that some big transplant centers aren't as interested in following the successful patients as they should be. Yet multiple myeloma is an insidious disease, and even with a CR, bad things can happen.
I hope that your husband will find a much better oncologist who will be much more diligent in his care. You have my best wishes and prayers.
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barbaramh - Name: Barbara Hoffman
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 1/5/2015
- Age at diagnosis: 75
Re: Stage at relapse & frequency of free light chain tests
My husband was diagnosed the month before you. He learned he had cancer on the afternoon of the first night of Hanukkah; then was in the hospital for a biopsy on Christmas Eve. To make things worse - we learned after his diagnosis that the likely culprit in the development of the myeloma was because he was a Camp LeJeune veteran and exposed to high levels of benzene.
Considering there is absolutely no one in his family with any cancer (zero for grandparents, parents, siblings, aunts and uncles on both sides as well as first cousins), that he was a non-smoker (nope, not even one cigarette or cigar), rarely drinks and was a physical therapist and avid cyclist and had a healthy lifestyle. This is not an understatement.
It's been hell!
His perspective:
You think: Hey, things could be worse! With great docs, good cytogenetics and phenomenal blood work and excellent general health, this is manageable. Other people manage this disease successfully - sometimes for years and years. And you think why not me too! And you sail through the first round of chemo with little side effects beyond some very mild stomach upset about 1 day a week after each treatment. Then you arrive at the goal: remission time! Life goes back to normal. You think relapse is inevitable but it doesn't rule your life. You enjoy the reprieve from the stomach shots, needle pokes and especially the interruption of routine and you feel good. Then...
Smack down! All because a cheap test wasn't performed and now you have liver involvement and a spinal tumor is invading the pedicle and your blood tests look like crap. Everything achieved is nullified by a lack of attention to detail.
For both of us - it's a difficult time. He feels betrayed. Not by the cancer. By the doc.
Considering there is absolutely no one in his family with any cancer (zero for grandparents, parents, siblings, aunts and uncles on both sides as well as first cousins), that he was a non-smoker (nope, not even one cigarette or cigar), rarely drinks and was a physical therapist and avid cyclist and had a healthy lifestyle. This is not an understatement.
It's been hell!
His perspective:
You think: Hey, things could be worse! With great docs, good cytogenetics and phenomenal blood work and excellent general health, this is manageable. Other people manage this disease successfully - sometimes for years and years. And you think why not me too! And you sail through the first round of chemo with little side effects beyond some very mild stomach upset about 1 day a week after each treatment. Then you arrive at the goal: remission time! Life goes back to normal. You think relapse is inevitable but it doesn't rule your life. You enjoy the reprieve from the stomach shots, needle pokes and especially the interruption of routine and you feel good. Then...
Smack down! All because a cheap test wasn't performed and now you have liver involvement and a spinal tumor is invading the pedicle and your blood tests look like crap. Everything achieved is nullified by a lack of attention to detail.
For both of us - it's a difficult time. He feels betrayed. Not by the cancer. By the doc.
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LauraB - Name: LauraB
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 72
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