My mom has just finished cycle 3 of her treatments: Revlimid (40 mg 1x14 days), dex (40 mg 1x a week), and Velcade (shot). We have yet to be told what her "numbers" are. I have asked at each appointment we have gone to and I get "the hospital didn't send all your paperwork" or "the order was accidentally canceled for that blood work".
We see the doctor again on Monday and I'm hoping for answers then, but I'm curious. Mom is starting her 4th cycle Monday.
How many reports should we have seen by now? All I really know is that she has IgG kappa and that she has A LOT of back pain!
Not that I would probably understand what all the numbers mean, BUT don't the doctors need them to see if the treatment she is on is working?
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Re: Tumor markers - how often should we see them?
Hello caregiver,
Your mum is almost certainly having her markers tested once a month -- if not more frequently. The main "tumour markers" her doctors will be looking at are her "M-spike" (monoclonal protein level, paraprotein level, "abnormal protein band") and her free light chain levels, particularly her kappa free light chain level (since she is IgG kappa) and her kappa/lambda ratio.
They also are probably watching her white blood cell counts, to make sure they are not getting too low, and probably her platelets as well. If she had any kidney problems at diagnosis, they also will be watching her creatinine level.
But the M-spike and free light chain levels are her main tumour markers.
K_Shash posted regularly about his initial treatment in this forum thread,
K_Shash's RVD induction therapy experience
and you can get a good sense from it both what markers his doctors were tracking and how often he was tested during his treatment. If I recall correctly, he did not have an M-spike at diagnosis, or his doctors were mainly concerned about his free light chain levels, so they focused mainly on those markers during his treatment.
Are you sure, by the way, about your mother's Revlimid dose? Usually the highest dose is 25 mg per day. It's not unheard of for someone to be receiving 40 mg daily, but that's not a common dose. (If it is 40 mg, I wouldn't be worried; your mother's doctors probably have a reason why they chose that dose. You just might want to ask why they chose it.)
I hope your mother responds well to her treatment. Good luck!
Your mum is almost certainly having her markers tested once a month -- if not more frequently. The main "tumour markers" her doctors will be looking at are her "M-spike" (monoclonal protein level, paraprotein level, "abnormal protein band") and her free light chain levels, particularly her kappa free light chain level (since she is IgG kappa) and her kappa/lambda ratio.
They also are probably watching her white blood cell counts, to make sure they are not getting too low, and probably her platelets as well. If she had any kidney problems at diagnosis, they also will be watching her creatinine level.
But the M-spike and free light chain levels are her main tumour markers.
K_Shash posted regularly about his initial treatment in this forum thread,
K_Shash's RVD induction therapy experience
and you can get a good sense from it both what markers his doctors were tracking and how often he was tested during his treatment. If I recall correctly, he did not have an M-spike at diagnosis, or his doctors were mainly concerned about his free light chain levels, so they focused mainly on those markers during his treatment.
Are you sure, by the way, about your mother's Revlimid dose? Usually the highest dose is 25 mg per day. It's not unheard of for someone to be receiving 40 mg daily, but that's not a common dose. (If it is 40 mg, I wouldn't be worried; your mother's doctors probably have a reason why they chose that dose. You just might want to ask why they chose it.)
I hope your mother responds well to her treatment. Good luck!
Re: Tumor markers - how often should we see them?
Hello Caregiver
I want to second Ian's response. But there is another issue over which you should clarification. Even in the UK we have monthly 'full panel' testing to check the myeloma markers and the status of our blood cell levels / biochemical profile.
Not only is your mother's dose of Revlimid much higher than the top dose of 25mg daily indicated and usually given, but it is being given daily over 14 days, which is shorter than the normal 21 days. Usually a cycle containing Revilmid is a daily dose for 21 days followed by a rest of 7 days before the next cycle. It looks as if the oncologist seeks to 'hit hard and fast'.
Everyone is treated differently. those who get significant bone marrow suppression, (very low white cells, platelets etc.) may have doses adjusted significantly downwards as well as be given injections to boost neutrophil counts. Those with kidney disease will be given lower adjusted doses of Revlimid. So the regime your mother's oncologist has instituted he must be able to explain.
It does seem very odd that you have had no results provided so far and 'excuses made'. I would not accept this, as the treatment dose is somewhat different so you should question how they are monitoring your mother's response.
Good luck.
Edna
I want to second Ian's response. But there is another issue over which you should clarification. Even in the UK we have monthly 'full panel' testing to check the myeloma markers and the status of our blood cell levels / biochemical profile.
Not only is your mother's dose of Revlimid much higher than the top dose of 25mg daily indicated and usually given, but it is being given daily over 14 days, which is shorter than the normal 21 days. Usually a cycle containing Revilmid is a daily dose for 21 days followed by a rest of 7 days before the next cycle. It looks as if the oncologist seeks to 'hit hard and fast'.
Everyone is treated differently. those who get significant bone marrow suppression, (very low white cells, platelets etc.) may have doses adjusted significantly downwards as well as be given injections to boost neutrophil counts. Those with kidney disease will be given lower adjusted doses of Revlimid. So the regime your mother's oncologist has instituted he must be able to explain.
It does seem very odd that you have had no results provided so far and 'excuses made'. I would not accept this, as the treatment dose is somewhat different so you should question how they are monitoring your mother's response.
Good luck.
Edna
Re: Tumor markers - how often should we see them?
Hello caregiver:
In addition to Ian's comments, I will add the following. My understanding is that for every Velcade injection, the platelets need to be checked, and they do a blood work, and check it, each time, before giving the treatment. I believe its a standard complete blood workup (CBC) that checks the red counts, the white counts, and the hemoglobin. There is a lot of info out there. Our hospital has a "portal" on the internet, and we can look at all of the history. The SPEP is the test that measures the M-Spike. It is not all that expensive, but it takes 3-4 days to get the results back in most cases. The Kappa/Lambda test (the free light chains) take 1-2 days to come back. Those test are done monthly, typically, in initial induction. Your comment that it should be tracked closely during initial induction is 100% correct. It would it would be very bad form for a first rate hospital to miss one by a bad test, and if they did, I would think that another would have to be ordered right away to get "makeup" results, even if number of days late. It really should not happen at all.
As to why you would get such poor answers (really unacceptable answers) on test results, a couple of thoughts. My experience is that there are a lot of people working in some of these centers, and you just ask the wrong person. One instance that I had an experience somewhat similar, is that we were consulting another doctor in the same office (not the place we are at now), and the nurses for each doctor totally screwed up the information. One nurse would just say "I don't know" if she thought it had anything to do with the other doctor. We had complete misinformation until we were able to get through to the doctors, who said "This should not be happening", and I replied, "That's what I am trying to tell you". A second thought is that there is a consent form for the patient to sign so that information can be shared with you (assuming you are in the US). You could be in the office and hearing all the medical info, but if you are not on the consent form, you could not call up by yourself to discuss your Mom's case. They would have to advise you that they could not give you any information (hopefully in a professional manner).
If you are not on that form, get it updated right away. When you are confirmed on the form, make sure that the staff knows that you are one of the "official" caregivers. Good luck
In addition to Ian's comments, I will add the following. My understanding is that for every Velcade injection, the platelets need to be checked, and they do a blood work, and check it, each time, before giving the treatment. I believe its a standard complete blood workup (CBC) that checks the red counts, the white counts, and the hemoglobin. There is a lot of info out there. Our hospital has a "portal" on the internet, and we can look at all of the history. The SPEP is the test that measures the M-Spike. It is not all that expensive, but it takes 3-4 days to get the results back in most cases. The Kappa/Lambda test (the free light chains) take 1-2 days to come back. Those test are done monthly, typically, in initial induction. Your comment that it should be tracked closely during initial induction is 100% correct. It would it would be very bad form for a first rate hospital to miss one by a bad test, and if they did, I would think that another would have to be ordered right away to get "makeup" results, even if number of days late. It really should not happen at all.
As to why you would get such poor answers (really unacceptable answers) on test results, a couple of thoughts. My experience is that there are a lot of people working in some of these centers, and you just ask the wrong person. One instance that I had an experience somewhat similar, is that we were consulting another doctor in the same office (not the place we are at now), and the nurses for each doctor totally screwed up the information. One nurse would just say "I don't know" if she thought it had anything to do with the other doctor. We had complete misinformation until we were able to get through to the doctors, who said "This should not be happening", and I replied, "That's what I am trying to tell you". A second thought is that there is a consent form for the patient to sign so that information can be shared with you (assuming you are in the US). You could be in the office and hearing all the medical info, but if you are not on the consent form, you could not call up by yourself to discuss your Mom's case. They would have to advise you that they could not give you any information (hopefully in a professional manner).
If you are not on that form, get it updated right away. When you are confirmed on the form, make sure that the staff knows that you are one of the "official" caregivers. Good luck
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JPC - Name: JPC
Re: Tumor markers - how often should we see them?
Caregivertojean-
I have a full panel of blood tests done each time I see my oncologist - CBC, chem panel, TSH, INR, SPEP, free lite, total protein, and I can't remember what else. I usually have anywhere from 8 to 10 tubes of blood drawn every 6 weeks. During my induction phase of treatment, where your mother is now, I had blood work done every month. I get all of the results within a week of my visit via a patient portal on the computer. Before the oncologist had the patient portal, he would print out the results at each visit and give them to me.
Your mother should be getting the results of all of her bloodwork after each time that it is done. The important numbers to look for are: m-spike, which is found in the SPEP results; RBC, WBC, platelet and Hgb levels; free lite results with kappa/lamda ratio. All of these are indicators of how well the treatment is working and if the treatment is causing any problems with the blood count levels. In the US Celgene, the manufacturer of Revlimid, wants blood work done on a monthly basis to monitor blood levels. I don't know what the recommendations are in the UK.
When your mother sees her doctor on Monday ask him for copies of all of her blood work results. If s/he won't give your mother copies of the results find out why not. Also make sure that your mother lets the doctor know that she is still having significant back pain. Were scans done of her spine to see if she has lesions? Is she getting a bisphosphonate infusion such as Zometa or Aredia for her bones if lesions were identified? What is being done to address the back pain?
I hope that your mother and you begin to get some answers to your questions. If not, can you change oncologists and/or places where she is being treated?
Nancy in Phila
I have a full panel of blood tests done each time I see my oncologist - CBC, chem panel, TSH, INR, SPEP, free lite, total protein, and I can't remember what else. I usually have anywhere from 8 to 10 tubes of blood drawn every 6 weeks. During my induction phase of treatment, where your mother is now, I had blood work done every month. I get all of the results within a week of my visit via a patient portal on the computer. Before the oncologist had the patient portal, he would print out the results at each visit and give them to me.
Your mother should be getting the results of all of her bloodwork after each time that it is done. The important numbers to look for are: m-spike, which is found in the SPEP results; RBC, WBC, platelet and Hgb levels; free lite results with kappa/lamda ratio. All of these are indicators of how well the treatment is working and if the treatment is causing any problems with the blood count levels. In the US Celgene, the manufacturer of Revlimid, wants blood work done on a monthly basis to monitor blood levels. I don't know what the recommendations are in the UK.
When your mother sees her doctor on Monday ask him for copies of all of her blood work results. If s/he won't give your mother copies of the results find out why not. Also make sure that your mother lets the doctor know that she is still having significant back pain. Were scans done of her spine to see if she has lesions? Is she getting a bisphosphonate infusion such as Zometa or Aredia for her bones if lesions were identified? What is being done to address the back pain?
I hope that your mother and you begin to get some answers to your questions. If not, can you change oncologists and/or places where she is being treated?
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
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