We found out my husband relapsed a few weeks ago. Originally, he was diagnosed as IgA kappa with 682 mg/dl; kappa/lambda ratio of 60.6 and an M-spike of 0.61 g/dL with a small spinal plasmacytoma that had fractured a vertebrae (which is how we found the cancer in the first place). CD138 positive plasma cells comprising 10% of his total marrow.
He went through his first round of treatment with Velcade, Revlimid, dexamethasone (VRD) and was then placed on Revlimid as maintenance (20 mg). He achieved remission in September 2015 but underwent two additional cycles of VRD although there was no detectable disease and 0 M-spike because we opted not to do stem cell transplant because of his age - 73. Overall, he tolerated treatment extremely well with little to no side effects and never ever missed a day of work!
His main oncologist fully expected a normal first remission of at least 2-4 years because he was in such outstanding health. The maintenance protocol was to stay on Revlimid with monthly check-ins with his managing oncologist and continuance of monthly Zometa at the same time.
We learned in April that he had relapsed - severely! IgA kappa free light chain level rose to 497 with kappa / lambda ratio of 21.49 (normal range 0.26 - 1.65), M-spike of 0.42 g/dL and CD138 positive plasma cells comprising now 20% of his total marrow. Also, a 7.9 cm liver plasmacytoma was discovered along with a 3.3 cm spinal lesion at L3 level invading the pedicle.
First question: What stage is he now in? No one will answer that question for us. Initially, they said he was at beginning Stage II. Now, because of the liver involvement and the additional spinal lesion as well as the increase in plasma cells - even though his free light chain levels are quite as high - would he be considered in Stage III?
His main onc said it was due to Revlimid resistance.
Second question: How often should free light chain levels be checked, especially after you achieve remission? His managing onc did not check his free light chain levels for 8 months - not since last September when he first achieved remission. All they did was a regular CBC each month. I just discovered this a few days ago. Everyone at the clinic is tight lipped right now and the doc is not reachable.
I don't know what to think or do! How does this change things overall?
He's starting a new treatment of Kyprolis (carfilzomib) and Cytoxan (cyclophosphamide) with dex although they can't give him the Cytoxan until next week because he's having a liver biopsy done on Thursday this week.
I'm really worried. He main doc fully expected a normal and "possibly an extended remission."
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
Hello LauraB:
I am sorry for your husband's issues. I thought I would chime in with a couple of quick comments. There is a bit of terminology issue when it comes to "staging". Multiple myeloma is not exactly the same as other cancers (solid tumors) with respect to staging. There is a definition of staging where they assign a stage based on (roughly speaking) how active the myeloma is when newly diagnosed. I have seen some people use the term "re-staging", however, I have also heard other doctors mention that the term is no longer applicable after initial diagnosis, as the definition only relates to the evaluation of newly diagnosed point in the disease. That may be why they have not told you the "stage".
I think, as you mentioned, that your husband is at first relapse, and the condition to look at is the response to first relapse (is it partial response, very good partial response, or complete response). Also, some people have the numbers your husband has, but have not yet developed any symptoms. If symptoms develop before the numbers get way out of whack, that is called "biological" relapse. Typically on the M-spike if you would have no symptoms, doctors would let the M-spike climb something like 0.5 before considering to re-start treatment. Sometimes that is called a serological relapse. In your husband's case, unfortunately, a plasmacytoma sprouted before reaching that level.
As to frequency of testing, I am not the final authority on this, but since you asked, I would think that markers should be tracked no less than once per quarter when in first remission. Hopefully, your husband will receive a second complete response, and testing will be more frequent, at that point.
Lastly, your doctors are trying different combinations at this point, which is what generally is done. I am not a doctor, and can't tell you what the right or best thing to do is. However, I can say that as your husband gets a hopefully good response to first relapse, that Revlimid maintenance will probably no longer work, and they very most likely will be looking at something else (ixazomib?), and at some point, you probably want to start looking at the newly approved monoclonal antibodies, which early results are showing that they work very well.
Good luck to you and your husband.
I am sorry for your husband's issues. I thought I would chime in with a couple of quick comments. There is a bit of terminology issue when it comes to "staging". Multiple myeloma is not exactly the same as other cancers (solid tumors) with respect to staging. There is a definition of staging where they assign a stage based on (roughly speaking) how active the myeloma is when newly diagnosed. I have seen some people use the term "re-staging", however, I have also heard other doctors mention that the term is no longer applicable after initial diagnosis, as the definition only relates to the evaluation of newly diagnosed point in the disease. That may be why they have not told you the "stage".
I think, as you mentioned, that your husband is at first relapse, and the condition to look at is the response to first relapse (is it partial response, very good partial response, or complete response). Also, some people have the numbers your husband has, but have not yet developed any symptoms. If symptoms develop before the numbers get way out of whack, that is called "biological" relapse. Typically on the M-spike if you would have no symptoms, doctors would let the M-spike climb something like 0.5 before considering to re-start treatment. Sometimes that is called a serological relapse. In your husband's case, unfortunately, a plasmacytoma sprouted before reaching that level.
As to frequency of testing, I am not the final authority on this, but since you asked, I would think that markers should be tracked no less than once per quarter when in first remission. Hopefully, your husband will receive a second complete response, and testing will be more frequent, at that point.
Lastly, your doctors are trying different combinations at this point, which is what generally is done. I am not a doctor, and can't tell you what the right or best thing to do is. However, I can say that as your husband gets a hopefully good response to first relapse, that Revlimid maintenance will probably no longer work, and they very most likely will be looking at something else (ixazomib?), and at some point, you probably want to start looking at the newly approved monoclonal antibodies, which early results are showing that they work very well.
Good luck to you and your husband.
Last edited by JPC on Thu May 19, 2016 6:35 am, edited 1 time in total.
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JPC - Name: JPC
Re: Stage at relapse & frequency of free light chain tests
Hello LauraB,
I am sorry to hear about the relapse and complications your husband is going through. Here is an outline of my 'myeloma journey' and comments about frequency of blood tests and staging:
My Myeloma Journey:
My case is somewhat similar though mine is a IgG kappa myeloma without any cytogenetic complications. I was diagnosed in late November 2014 because of the high protein in the annual urine test. I went on the Revlimid, Velcade, and dexamethasone (RVD) induction therapy from mid December 2014 through July 2015 (a 2-month delay caused by a nasty flu at the end of March 2015). I responded very well to just 15 mg Revlimid and my oncologist started the "tapering" of the chemo by first dropping the Velcade shots and then dropping the dex at the end of October.
Technically I am in the maintenance phase but my kappa is fluctuating around 30 - 40 mg/L (normal high 19.4) and my kappa / lambda ratio is at the high end of the normal range at 1.7. My oncologist is trying various doses of Revlimid because I could not tolerate the 15 mg (3 weeks on and 1 week off) after the dex was dropped, as evidenced by a Revlimid rash on both my legs. The lower levels of Revlimid have caused my kappa to rise from 12.5 levels (without Velcade) to 30+ and now 42.6! I will be trying out a 20 mg alternate day dosing from this week. I have opted against an autologous stem cell transplant (ASCT).
Revlimid Resistance Concerns:
My oncologist and some other oncologists treating other patients (as related to by other myeloma patients posting their experience here on the Beacon) say that my current kappa levels are 'manageable'. However, at least another oncologist colleague of my wife thinks I should undergo a whole new induction therapy with alternative drugs. Even my wife, who is an internist, is not sure what to think. I think her colleague may be confusing my test results mg/L vs mg/dL. I am not a doctor but I have tabulated all my test results and so far my kappa level has responded almost directly proportional to the level of Revlimid I have taken during any 4 weeks prior to the blood test. Therefore, I am concerned now if such Revlimid resistance can develop in my case any time.
Frequency of Blood Tests:
All this 'fine tuning' of my treatment is because of my complete blood tests (CBC, WBC and kappa and K/L) every 4 weeks. My understanding from many posts on the Beacon is that this frequency is fairly common. It sure seems that anything can happen over a long 8-month period. I found that a routine communication via email was the best way to get a response from the oncology department that is looking after me.
Staging:
As to the staging, everything I have read about this topic is fairly vague. The best guide to me was the mSMART guidelines (Chart) from the Mayo Clinic. I hope you can access it with a quick search. I used this information in deciding against any ASCT at this time. Again, my wife's oncologist colleague was all for an ASCT!
I sincerely wish your husband and your family all the best and I hope your husband responds well to the new chemo. It seems that his oncologists are shocked with this sudden 'resistance' / non-response to Revlimid.
It is encouraging to know that there are at least two alternative drugs to Revlimid, available now, as far as I know. Each new drug has its own set of side effects, though.
I am sorry to hear about the relapse and complications your husband is going through. Here is an outline of my 'myeloma journey' and comments about frequency of blood tests and staging:
My Myeloma Journey:
My case is somewhat similar though mine is a IgG kappa myeloma without any cytogenetic complications. I was diagnosed in late November 2014 because of the high protein in the annual urine test. I went on the Revlimid, Velcade, and dexamethasone (RVD) induction therapy from mid December 2014 through July 2015 (a 2-month delay caused by a nasty flu at the end of March 2015). I responded very well to just 15 mg Revlimid and my oncologist started the "tapering" of the chemo by first dropping the Velcade shots and then dropping the dex at the end of October.
Technically I am in the maintenance phase but my kappa is fluctuating around 30 - 40 mg/L (normal high 19.4) and my kappa / lambda ratio is at the high end of the normal range at 1.7. My oncologist is trying various doses of Revlimid because I could not tolerate the 15 mg (3 weeks on and 1 week off) after the dex was dropped, as evidenced by a Revlimid rash on both my legs. The lower levels of Revlimid have caused my kappa to rise from 12.5 levels (without Velcade) to 30+ and now 42.6! I will be trying out a 20 mg alternate day dosing from this week. I have opted against an autologous stem cell transplant (ASCT).
Revlimid Resistance Concerns:
My oncologist and some other oncologists treating other patients (as related to by other myeloma patients posting their experience here on the Beacon) say that my current kappa levels are 'manageable'. However, at least another oncologist colleague of my wife thinks I should undergo a whole new induction therapy with alternative drugs. Even my wife, who is an internist, is not sure what to think. I think her colleague may be confusing my test results mg/L vs mg/dL. I am not a doctor but I have tabulated all my test results and so far my kappa level has responded almost directly proportional to the level of Revlimid I have taken during any 4 weeks prior to the blood test. Therefore, I am concerned now if such Revlimid resistance can develop in my case any time.
Frequency of Blood Tests:
All this 'fine tuning' of my treatment is because of my complete blood tests (CBC, WBC and kappa and K/L) every 4 weeks. My understanding from many posts on the Beacon is that this frequency is fairly common. It sure seems that anything can happen over a long 8-month period. I found that a routine communication via email was the best way to get a response from the oncology department that is looking after me.
Staging:
As to the staging, everything I have read about this topic is fairly vague. The best guide to me was the mSMART guidelines (Chart) from the Mayo Clinic. I hope you can access it with a quick search. I used this information in deciding against any ASCT at this time. Again, my wife's oncologist colleague was all for an ASCT!
I sincerely wish your husband and your family all the best and I hope your husband responds well to the new chemo. It seems that his oncologists are shocked with this sudden 'resistance' / non-response to Revlimid.
It is encouraging to know that there are at least two alternative drugs to Revlimid, available now, as far as I know. Each new drug has its own set of side effects, though.
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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
His main oncologist said he tests free light chain levels and M-spikes every 4 weeks. That said, the managing oncologist at the clinic where he receives treatment did not test AT ALL since he achieved a VGPR last September. In fact, had we not asked for recent results for free light chains and M-spike, he wouldn't have been tested for God knows how long. That is how they realized the relapse was occurring.
PET and bone marrow biopsies now reveal his plasma counts going from 10% to 20%; multiple lesions have developed including two tumors - one of the spine, one of the liver, and free light chain and M-spike levels are at or near pre-treatment levels.
I asked his main onc - would we have known he was Revlimid resistant if we did regular monthly testing? He said yes.
I asked, "Would the new lesions and liver plasmacytoma have been preventable if we tested so that you would have learned earlier that he was not responding to Revlimid?"
He said, "Absolutely, yes."
I understand relapse occurs; what I am trying to determine is whether or not he has "lost" some of the advantage of this first remission; that is, did it get cut short because of this oversight in testing his free light chain levels and M-spike, which would have told us that he was one of those rare people who do not respond to Revlimid right away?
I don't really care whether it's called staging or re-staging - the nomenclature isn't important to me. What's important is trying to determine where he is, so to speak, and I wanted to know how often other people are getting tested. Again, his main doc said every 4 weeks although in some cases, if someone is smoldering or if they achieved sCR and have been stable for awhile, it might go to every other month or every few months.
The managing onc said she didn't test him because they were confident he would stay in remission for a long time because 1) he responded so quickly and so well to induction therapy; 2) that he had minimal lesions to start and only 1 small plasmacytoma; 3) his cytogenetics were normal (no FSH - just straight up plain IgA); and 4) when he started out, you never would have known he had myeloma (caught by "accident") - normal CBC all around with normal liver and kidneys. He had a great go-round with induction with almost no side effects, CBC numbers stayed relatively stable with only a slight rise in glucose, just under normal heme counts, no calcemia, etc.
This is how I feel: Shocked and angry
PET and bone marrow biopsies now reveal his plasma counts going from 10% to 20%; multiple lesions have developed including two tumors - one of the spine, one of the liver, and free light chain and M-spike levels are at or near pre-treatment levels.
I asked his main onc - would we have known he was Revlimid resistant if we did regular monthly testing? He said yes.
I asked, "Would the new lesions and liver plasmacytoma have been preventable if we tested so that you would have learned earlier that he was not responding to Revlimid?"
He said, "Absolutely, yes."
I understand relapse occurs; what I am trying to determine is whether or not he has "lost" some of the advantage of this first remission; that is, did it get cut short because of this oversight in testing his free light chain levels and M-spike, which would have told us that he was one of those rare people who do not respond to Revlimid right away?
I don't really care whether it's called staging or re-staging - the nomenclature isn't important to me. What's important is trying to determine where he is, so to speak, and I wanted to know how often other people are getting tested. Again, his main doc said every 4 weeks although in some cases, if someone is smoldering or if they achieved sCR and have been stable for awhile, it might go to every other month or every few months.
The managing onc said she didn't test him because they were confident he would stay in remission for a long time because 1) he responded so quickly and so well to induction therapy; 2) that he had minimal lesions to start and only 1 small plasmacytoma; 3) his cytogenetics were normal (no FSH - just straight up plain IgA); and 4) when he started out, you never would have known he had myeloma (caught by "accident") - normal CBC all around with normal liver and kidneys. He had a great go-round with induction with almost no side effects, CBC numbers stayed relatively stable with only a slight rise in glucose, just under normal heme counts, no calcemia, etc.
This is how I feel: Shocked and angry
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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
I think you have every right to be angry. You should definitely not go back to this doctor, who waited 8 months to run a full myeloma panel on your husband.
Myeloma is a very tricky disease; most oncologists know this. Just because someone responds well upfront does not mean it will be a sustained response. Even if there are no negative cytogenetics, the myeloma can find its way around a treatment protocol. In the beginning, before you know how your individual case "behaves," I think monthly testing is the norm. After induction, if there is a CR, (with or without transplant), I have heard doctors moving to a once every 3 months schedule. However, that is variable. A lot can happen in 3 months.
Don't feel all is lost. You will probably be able to regain control over the disease, but I would definitely put myself in the care of a myeloma specialist, if at all possible.
Good luck, and please let us know how you make out.
Myeloma is a very tricky disease; most oncologists know this. Just because someone responds well upfront does not mean it will be a sustained response. Even if there are no negative cytogenetics, the myeloma can find its way around a treatment protocol. In the beginning, before you know how your individual case "behaves," I think monthly testing is the norm. After induction, if there is a CR, (with or without transplant), I have heard doctors moving to a once every 3 months schedule. However, that is variable. A lot can happen in 3 months.
Don't feel all is lost. You will probably be able to regain control over the disease, but I would definitely put myself in the care of a myeloma specialist, if at all possible.
Good luck, and please let us know how you make out.
Re: Stage at relapse & frequency of free light chain tests
Hi LauraB,
Ellen has expressed all my thoughts I was trying to gather since I read your post earlier this morning, and in better words.
I am shocked (and angry, too) that such negligence to detail can occur in the critical monitoring and treatment of a cancer patient. I have not 'settled' into a maintenance phase yet but I had assumed that the monthly monitoring is a "standard of care". Your post has given me and others an insight into 'what else can go wrong'.
I hope that your husband's current levels of the kappa and lambda come down rapidly with the new treatment. All the best.
Ellen has expressed all my thoughts I was trying to gather since I read your post earlier this morning, and in better words.
I am shocked (and angry, too) that such negligence to detail can occur in the critical monitoring and treatment of a cancer patient. I have not 'settled' into a maintenance phase yet but I had assumed that the monthly monitoring is a "standard of care". Your post has given me and others an insight into 'what else can go wrong'.
I hope that your husband's current levels of the kappa and lambda come down rapidly with the new treatment. All the best.
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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
Thank you for your kind wishes. The unfortunate part is that he IS under the care of myeloma doctor.
We are in the process of trying to narrow down available choices for a second opinion and quite likely a transfer of his care to a new doctor.
We are in the process of trying to narrow down available choices for a second opinion and quite likely a transfer of his care to a new doctor.
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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
I went in remission very quickly but continued treatment until I had completed 9 cycles last June. I had no maintenance afterwards on the recommendation of my hematologist. I go for a full blood test monthly but only see my hematologist every three months.
I assume my monthly test results are reviewed by at least his nurse. However, better safe than sorry. I phone and ask for a printout of my results every month so I can check all the numbers myself.
I assume my monthly test results are reviewed by at least his nurse. However, better safe than sorry. I phone and ask for a printout of my results every month so I can check all the numbers myself.
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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
My first thought when I read your original post was that you need to switch oncologists ASAP. Fortunately you are already researching that. Also, the staging doesn't really tell you anything. I've never been told what stage I might be in. It always has been referred to as MGUS, smoldering myeloma, active myeloma, complete response, very good partial response or relapse.
When I was first diagnosed I was followed every month for about 3 months since I was diagnosed as smoldering. Then my appointments were spread out to every 6 weeks. A year after my diagnosis my oncologist decided to lengthen the time between visits to 3 months. But, a few weeks later my left arm broke from lesions that had developed. I obviously had transitioned to active myeloma. Again I was seen every 4 weeks while I started treatment until I had a transplant. After the transplant I was followed 2 times a week and gradually increasing the time to once every 6 weeks over the next year. I had reached CR about 7 months post transplant. At the one year mark he again tried to extend the time between visits to 3 months, but then I developed shingles in between visits. After that I've been on an every 6 week regimen of visits for 5 years.
At every visit I have a complete panel of bloodwork done with CBC, chemistry, SPEP, free lite, TSH, etc. It's possible that some of the things don't need to be done at every visit, but I don't mind and it makes me feel more secure that my oncologist has the information that he needs.
With this frequent monitoring the fact that I came out of CR was picked up quickly and followed closely. It took 2 more years before I had officially relapsed. And, when it happened it happened quickly. One visit my numbers were the same as they had been for about 2 years. 6 weeks later my m-spike and free lite results had jumped dramatically and I had officially relapsed.
More frequent monitoring of your husband's bloodwork probably would have been better, but it's also possible that the relapse happened very quickly. That doesn't make you feel any better or less angry, but just a thought.
It's very possible that your husband will again respond well to whatever treatment regimen he does. There also are so many more drugs available that are effective that can be used. It just is really important that you have an oncologist, hopefully a myeloma specialist, who is more invested in making sure that your husband is responding well and continues to do well.
Nancy in Phila
When I was first diagnosed I was followed every month for about 3 months since I was diagnosed as smoldering. Then my appointments were spread out to every 6 weeks. A year after my diagnosis my oncologist decided to lengthen the time between visits to 3 months. But, a few weeks later my left arm broke from lesions that had developed. I obviously had transitioned to active myeloma. Again I was seen every 4 weeks while I started treatment until I had a transplant. After the transplant I was followed 2 times a week and gradually increasing the time to once every 6 weeks over the next year. I had reached CR about 7 months post transplant. At the one year mark he again tried to extend the time between visits to 3 months, but then I developed shingles in between visits. After that I've been on an every 6 week regimen of visits for 5 years.
At every visit I have a complete panel of bloodwork done with CBC, chemistry, SPEP, free lite, TSH, etc. It's possible that some of the things don't need to be done at every visit, but I don't mind and it makes me feel more secure that my oncologist has the information that he needs.
With this frequent monitoring the fact that I came out of CR was picked up quickly and followed closely. It took 2 more years before I had officially relapsed. And, when it happened it happened quickly. One visit my numbers were the same as they had been for about 2 years. 6 weeks later my m-spike and free lite results had jumped dramatically and I had officially relapsed.
More frequent monitoring of your husband's bloodwork probably would have been better, but it's also possible that the relapse happened very quickly. That doesn't make you feel any better or less angry, but just a thought.
It's very possible that your husband will again respond well to whatever treatment regimen he does. There also are so many more drugs available that are effective that can be used. It just is really important that you have an oncologist, hopefully a myeloma specialist, who is more invested in making sure that your husband is responding well and continues to do well.
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: Stage at relapse & frequency of free light chain tests
Yes, I agree. It's very important, the monitoring part of actual treatment. Naturally, my husband and myself don't want to be ruled by numbers and the measuring of free light chain levels and an M-spike is not up for linear interpretation. Numbers go up and go down - that is the very nature of the disease, to wax and wane. We also understand clearly the inevitability of relapse.
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.
So in November they didn't test but he saw the PA and not the doc.
In December, he saw the PA, no test.
In January, he saw the doc and although no test was done since September and he was 2 months out from his last treatment cycle, still no testing, but the doc wrote an order that testing should be done.
In February, he saw the PA. No test.
In March, I told my hubby to make sure he got the testing results, thinking they hadn't mentioned it because everything was good, but I wanted to update his medical file so I told him, "Make sure they give you copies of your cytology testing when you go." The nurse said, "I can't find them right now. I will mail them to you." He saw the doctor that day and advised her he was unable to get results from his recent tests. She referred him to medical records and blood was drawn.
On April 19th, - a MONTH later, he saw the PA. When he again mentioned testing, the PA pulled up his file, jumped up and said, "Your cancer is back. Hang tight, I have to call the doctor." Then he left the room.
No matter how one might look at this particular situation, one thing is clear: An oncologist is unable to determine if relapse has occurred if testing isn't completed. This was a complete failure in terms of proper monitoring.
My husband's got multiple lesions, a new spinal tumor, a liver plasmacytoma that is HUGE, and free light chain levels and an M-spike that pretty much tells us that whatever response he achieved, it is COMPLETELY reversed and the disease has significantly progressed.
I am pissed. No patient should have to remind a doctor to do what is clinically appropriate to do. Myeloma MUST be monitored carefully. Waiting 5 months after a treatment cycle and 8 months between serum electropheresis is not recommended standard practice, nor is it just plain common sense in terms of what is appropriate medical management.
I want people to read this and make sure they hold their doc to a standard of care that is appropriate. If you aren't sure what is appropriate, ASK them to justify their clinical protocol.
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.
So in November they didn't test but he saw the PA and not the doc.
In December, he saw the PA, no test.
In January, he saw the doc and although no test was done since September and he was 2 months out from his last treatment cycle, still no testing, but the doc wrote an order that testing should be done.
In February, he saw the PA. No test.
In March, I told my hubby to make sure he got the testing results, thinking they hadn't mentioned it because everything was good, but I wanted to update his medical file so I told him, "Make sure they give you copies of your cytology testing when you go." The nurse said, "I can't find them right now. I will mail them to you." He saw the doctor that day and advised her he was unable to get results from his recent tests. She referred him to medical records and blood was drawn.
On April 19th, - a MONTH later, he saw the PA. When he again mentioned testing, the PA pulled up his file, jumped up and said, "Your cancer is back. Hang tight, I have to call the doctor." Then he left the room.
No matter how one might look at this particular situation, one thing is clear: An oncologist is unable to determine if relapse has occurred if testing isn't completed. This was a complete failure in terms of proper monitoring.
My husband's got multiple lesions, a new spinal tumor, a liver plasmacytoma that is HUGE, and free light chain levels and an M-spike that pretty much tells us that whatever response he achieved, it is COMPLETELY reversed and the disease has significantly progressed.
I am pissed. No patient should have to remind a doctor to do what is clinically appropriate to do. Myeloma MUST be monitored carefully. Waiting 5 months after a treatment cycle and 8 months between serum electropheresis is not recommended standard practice, nor is it just plain common sense in terms of what is appropriate medical management.
I want people to read this and make sure they hold their doc to a standard of care that is appropriate. If you aren't sure what is appropriate, ASK them to justify their clinical protocol.
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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
22 posts
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