My husband is in "remission" since his SCT in November of 2013. In the last 3 months his oncologist has run the SPEP test and IFE May 6th, May 30th, June 24, June 27 and July 18th. They have all been "no M protein detected" . However, we are still waiting on the last one.
Does everyone get tested this often?
I feel like we are in a constant state of panic waiting for the results. It makes it impossible to try to go on living a somewhat normal life.
Is it really necessary to test this often?
Forums
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: How frequently should testing be done?
Hello from gray and rainy Seattle (it has been beautiful for weeks though!),
In general there is no need to check the myeloma tests (SPEP, serum free light chains, urine testing / UPEP) more often than once per month. My own practice is that, for a patient in a CR for 6-12+ months after stem cell transplant, I would begin to lengthen the time between testing. Really stable patients could go as long as 6-12 weeks without testing in my opinion. Without question, all of the testing, visiting with the doctor, and worrying about the results can drive a patient and their family crazy!
I think your point is well taken and I would ask the hematologist / oncologist if your husband could be tested a little less often.
In general there is no need to check the myeloma tests (SPEP, serum free light chains, urine testing / UPEP) more often than once per month. My own practice is that, for a patient in a CR for 6-12+ months after stem cell transplant, I would begin to lengthen the time between testing. Really stable patients could go as long as 6-12 weeks without testing in my opinion. Without question, all of the testing, visiting with the doctor, and worrying about the results can drive a patient and their family crazy!
I think your point is well taken and I would ask the hematologist / oncologist if your husband could be tested a little less often.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: How frequently should testing be done?
Thanks Dr. Libby I will pass on this recommendation!
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: How frequently should testing be done?
My mom's doctors check her blood/urine monthly.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: How frequently should testing be done?
This something that I struggle with as well. I was diagnosed in 2012 and was in a complete stringent response for about a 1 year and a half. (No transplant as of yet.) I'm now having to wait every month for my light chain results. I agree, no fun. How are we suppose to live a somewhat normal life. It really sucks!! 
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Lsellers - Name: Liliana Sellers
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 56
Re: How frequently should testing be done?
I get tested every 6 weeks. When I was in CR, my oncologist attempted extending it to 3 months, but then I had a problem develop before the 3 month appointment. So, since then it has been every 6 weeks. I appreciate being followed that closely, but would quickly tire of a shorter period of time unless I was having problems.
Nancy in Phila
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: How frequently should testing be done?
My problem was the opposite: I'm 'high risk,' but my oncologist didn't test anything but my WBC levels for close to six months after my SCT, and has told me that he'll only do the specific multiple myeloma monitoring tests every three to four months -- and then he wasn't going to tell ME what the results were "unless there is a problem ... no news is good news."
At the same time, my transplant doc wanted the tests done monthly. I suppose that there might be reasons to do this more often, but, especially if one is on maintenance therapy (like Revlimid) doesn't it make sense to do it monthly?
And what are MY options, if the doc wants to dial back to the 'six months and don't worry about it" approach?
At the same time, my transplant doc wanted the tests done monthly. I suppose that there might be reasons to do this more often, but, especially if one is on maintenance therapy (like Revlimid) doesn't it make sense to do it monthly?
And what are MY options, if the doc wants to dial back to the 'six months and don't worry about it" approach?
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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 was checked every 3 months after my stem cell transplant. I have since started to come out of remission, but the 3 month cycle wasn't an issue.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How frequently should testing be done?
I don't think that your myeloma doctor would scale back your testing to more than 3-4 months, Dianalad! (Even if you are in remission).
I asked that question early on, since for other cancer survivors, their testing goes to less frequent intervals. I have friends who had different cancers, such as stomach, prostate, etc., i.e. NOT blood cancers, whose testing is now only every year or two,or even five years, since they show NO signs of the disease. So I did ask about that when I was in a CR. But the nurse just looked at me and said that with myeloma, one's situation can change quickly, so they would always test my blood for myeloma markers frequently. And I am not a 'high risk' patient either!
I asked that question early on, since for other cancer survivors, their testing goes to less frequent intervals. I have friends who had different cancers, such as stomach, prostate, etc., i.e. NOT blood cancers, whose testing is now only every year or two,or even five years, since they show NO signs of the disease. So I did ask about that when I was in a CR. But the nurse just looked at me and said that with myeloma, one's situation can change quickly, so they would always test my blood for myeloma markers frequently. And I am not a 'high risk' patient either!
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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: How frequently should testing be done?
I had my SCT last November. Up until this past June, I was being checked about every 6 weeks by my oncologist. At that point he felt that my remission was stable and informed me that he didn't need to see me for 4 months!
There was a big part of me that was thrilled; yet there was another part of me that likes the assurance that I'm still in remission with regular check ups.
At the moment I'm enjoying my freedom from doctors. It has been a couple of years since I've gone this long without seeing one.
There was a big part of me that was thrilled; yet there was another part of me that likes the assurance that I'm still in remission with regular check ups.
At the moment I'm enjoying my freedom from doctors. It has been a couple of years since I've gone this long without seeing one.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
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