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Re: How frequently should testing be done?
I'm tested every 3 months in which I alternate between my local oncologist and my myeloma specialist. Yes, waiting for those test results is stressful. My SCT was in June 2012 and I'm currently in "remission".
Re: How frequently should testing be done?
Dianaiad,
We have the same HMO and stem cell transplant doctor. I do not have high risk myeloma and while in CR after my SCT, the interval between myeloma specific testing was eventually lengthened to nearly six months. When I eventually got a positive immunofixation, that was shortened to 3 months. A bone marrow biopsy check earlier this year showed 5% plasma cells, but the interval has stayed at 3 months.
So far, other than a positive immunofixation test, my blood immunoglobulin and light chain tests all have been in normal ranges until my last test a few weeks ago, where my kappa light chain had just gone out of range high, but just by a little bit. My oncologist in the area I live wants me to make an appointment to go over the results. My next one is tomorrow.
With things as stable as they have been for me, these appointments are usually pretty short, there usually is not much of anything new or different to discuss or go over. Sometimes we talk about drugs that have just been approved by the FDA, or ones in clinical trials that are near approval and when we might use them if needed.
These test results are available online so you should be able to have access to them through the Internet. In my initial induction therapy, testing was done monthly, but I did not necessarily see my oncologist monthly to go over them. My numbers were always improving then, so we just stayed the course. I could see that, if myeloma tests were showing disease that is high risk and showing resistance to therapy, there would be a need to meet frequently to discuss results and strategy.
We have the same HMO and stem cell transplant doctor. I do not have high risk myeloma and while in CR after my SCT, the interval between myeloma specific testing was eventually lengthened to nearly six months. When I eventually got a positive immunofixation, that was shortened to 3 months. A bone marrow biopsy check earlier this year showed 5% plasma cells, but the interval has stayed at 3 months.
So far, other than a positive immunofixation test, my blood immunoglobulin and light chain tests all have been in normal ranges until my last test a few weeks ago, where my kappa light chain had just gone out of range high, but just by a little bit. My oncologist in the area I live wants me to make an appointment to go over the results. My next one is tomorrow.
With things as stable as they have been for me, these appointments are usually pretty short, there usually is not much of anything new or different to discuss or go over. Sometimes we talk about drugs that have just been approved by the FDA, or ones in clinical trials that are near approval and when we might use them if needed.
These test results are available online so you should be able to have access to them through the Internet. In my initial induction therapy, testing was done monthly, but I did not necessarily see my oncologist monthly to go over them. My numbers were always improving then, so we just stayed the course. I could see that, if myeloma tests were showing disease that is high risk and showing resistance to therapy, there would be a need to meet frequently to discuss results and strategy.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How frequently should testing be done?
I have been in complete remission since 2006, after two SCTs. I now only have it tested once every six months. I would prefer to have it tested only once a year, but my husband and doctor won't agree to that (yet). Right after my SCTs I had it tested every month, then every three months. I am definitely in the category of trying to forget about the illness, and the more frequent testing is done, the harder it is to forget about it.
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ldclark
Re: How frequently should testing be done?
To cut a long story short, I'm glad to be tested often. As of a month ago, I was treated for pleurisy, which I might add is very painful! Anyway, a CT scan was done, which showed a broken right 8th rib. The local hospital got in touch with the city hospital that had been treating me, diagnosed me with multiple myeloma in May 2012, radiation to sacral area as a large tumor was pressing on my spinal nerve. Velcade chemotherapy trial ensued towards a SCT in October 2012, 5 weeks later I was in CR.
Maintenance therapy of thalidomide for 12 months afterwards plus Zometa infusion's monthly.
I had blood and urine tests every month until the beginning of this year they changed to 2 monthly.
In May this year my bloods showed up as normal. Now in July they paint a very different picture and, after having the usual tests -- i.e., skeletal bone scan, CT scan, bone marrow biopsy and MRI -- I'm riddled with myeloma lesions / cells in my upper thighs, pelvis, upper / lower spine, collar bone, ribs, T4 L2, upper arm, and several pathological fractures!
I was and am still shocked at the reports.
So I'm starting Revlimid and dexamethasone and keeping my fingers crossed it treats me well ...
So for me, regular testing was good, however the pleurisy did give the doctors a heads up!!
Thanks for reading, tried not to go on too much
Cheers Deb
Maintenance therapy of thalidomide for 12 months afterwards plus Zometa infusion's monthly.
I had blood and urine tests every month until the beginning of this year they changed to 2 monthly.
In May this year my bloods showed up as normal. Now in July they paint a very different picture and, after having the usual tests -- i.e., skeletal bone scan, CT scan, bone marrow biopsy and MRI -- I'm riddled with myeloma lesions / cells in my upper thighs, pelvis, upper / lower spine, collar bone, ribs, T4 L2, upper arm, and several pathological fractures!
I was and am still shocked at the reports.
So I'm starting Revlimid and dexamethasone and keeping my fingers crossed it treats me well ...
So for me, regular testing was good, however the pleurisy did give the doctors a heads up!!
Thanks for reading, tried not to go on too much
Cheers Deb
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guzzigirl - Name: Debbie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2012
- Age at diagnosis: 47
Re: How frequently should testing be done?
Deb - oh my! I am so sorry you've relapsed. Hoping you respond well to treatment.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: How frequently should testing be done?
I was tested every 3 weeks because I was on Revlimid and Zometa - IV. So my kidney function had to be monitored. And Celgene (maker of Revlimid) requires the blood work and a survey. Now that I am off of Revlimid, I go for blood work every 6 weeks, and soon to be once every 3 months when my numbers level out.
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: How frequently should testing be done?
For clarification I am on Revlimid maintenance therapy and get CBC, WBC, and Serum Creatinine done monthly to renew the Revlimid and Calcium and AST for Aredia every three months. These are not sensitive test for the presence of myeloma though, those test are every three months.
Interestingly though I called the pharmacy to check on my Revlimid prescription renewal for this month and they said my oncologist said to hold it and would get back to them after my appointment with him tomorrow. This has never happened before. My Kappa light chains just went above the normal high range a few weeks ago on my last test, but not by much. I think there may be some changes in store for me. I will find out tomorrow.
Interestingly though I called the pharmacy to check on my Revlimid prescription renewal for this month and they said my oncologist said to hold it and would get back to them after my appointment with him tomorrow. This has never happened before. My Kappa light chains just went above the normal high range a few weeks ago on my last test, but not by much. I think there may be some changes in store for me. I will find out tomorrow.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How frequently should testing be done?
First: I wish you the very best tomorrow!
Yes Eric, we share the same insurance and the same transplant doc. He's the one who was not happy that I hadn't had the monitoring as frequently as he would like. If I stay in CR, he'll probably cut 'em back, too ... I think.
However, we do NOT share the same neurologist / oncologist. Mine is considerably more, er ... 'laid back." Far too laid back, I think, in some areas.
As well, he doesn't release the tests to kp.org. SOME are released; the WBC, calcium and creatinine, but nothing else is. Dr. B doesn't release anything he doesn't have to. The standard line is that he doesn't want patients misunderstanding the results and panicking.
(snort)
So I march into Medical Records and have 'em print them out for me. Speaking of ... you may want to do the medical records request yourself. Perhaps there are some test results that you are NOT getting on kp.org.
Either way, I would prefer to be monitored a little more closely than every three months ... at least right now. My SCT is only 9 months old.
Yes Eric, we share the same insurance and the same transplant doc. He's the one who was not happy that I hadn't had the monitoring as frequently as he would like. If I stay in CR, he'll probably cut 'em back, too ... I think.
However, we do NOT share the same neurologist / oncologist. Mine is considerably more, er ... 'laid back." Far too laid back, I think, in some areas.
As well, he doesn't release the tests to kp.org. SOME are released; the WBC, calcium and creatinine, but nothing else is. Dr. B doesn't release anything he doesn't have to. The standard line is that he doesn't want patients misunderstanding the results and panicking.
(snort)
So I march into Medical Records and have 'em print them out for me. Speaking of ... you may want to do the medical records request yourself. Perhaps there are some test results that you are NOT getting on kp.org.
Either way, I would prefer to be monitored a little more closely than every three months ... at least right now. My SCT is only 9 months old.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: How frequently should testing be done?
I am on Maintenance but am in a remissive state. I get Velcade and 8 mg of dex once every 2 weeks and have a CBC and Chemistry Panel done at that time. My SPEP and sFLC used to be checked monthly, then it was once every 6 weeks. But for the last 3 years it has been once every 12 weeks as I remain stable.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: How frequently should testing be done?
My wife is monitored aggressively, with a full myeloma panel every 3 weeks. This includes SPEP, SFLC, quantitative immunoglobulins, Ca, liver enzymes, kidney function, electrolytes, and CBC. (It does not include UPEP.) She has had this level of monitoring since her autoSCT in February 2013 (18 months).
The justification for this is that she is considered very high risk due to presence of del(17p) and t(4;14) genetic anomalies by FISH. She has never achieved CR, although she has been stable since SCT at an M protein level of 0.5 to 0.7 g/dl. kappa/lambda has generally been near zero (she has IgG lambda multiple myeloma). I wonder whether Dr LIbby would agree that more frequent monitoring is a good idea under these circumstances.
Her post-SCT treatment has also remained fairly aggressive in an attempt to achieve CR; it has not done that, but may have allowed her to avoid progression so far. For the past 6 months she has been on RVd (bortezomib 1.5 mg/m2 subq weekly, lenalidomide 10 mg 14d of 21, dexamethasone 20 mg weekly).
--Larry
The justification for this is that she is considered very high risk due to presence of del(17p) and t(4;14) genetic anomalies by FISH. She has never achieved CR, although she has been stable since SCT at an M protein level of 0.5 to 0.7 g/dl. kappa/lambda has generally been near zero (she has IgG lambda multiple myeloma). I wonder whether Dr LIbby would agree that more frequent monitoring is a good idea under these circumstances.
Her post-SCT treatment has also remained fairly aggressive in an attempt to achieve CR; it has not done that, but may have allowed her to avoid progression so far. For the past 6 months she has been on RVd (bortezomib 1.5 mg/m2 subq weekly, lenalidomide 10 mg 14d of 21, dexamethasone 20 mg weekly).
--Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
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