My oncologist is suggesting I start treatment (Revlimid, dexamethasone, warfarin), but I'm somewhat reluctant as I feel good and am concerned that the medication will take that away. Based on the reading I have done, starting treatment now seems optional?
M-spike - 1.0 g/dl
IgG lambda free light chains - 35 mg/L
Kappa/lambda ratio - 0.33
24-hourr urine positive for Bence-Jones (13.9 mg)
Single bone lesion on MRI
Calcium, albumin, creatinine, hemoglobin - all normal
Bone marrow - 10-15% plasma cells, favorable prognosis based on FISH.
An M-spike was noted 6 months ago when I was being worked up for an unrelated problem. At that time, it was 1.3 g/dL (different lab, however).
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Re: Should I start treatment at this stage?
Hello MWP:
There is recent article posted on the forum by RadiantTiger. Here is the link to the thread:
Mayo Clinic article on diagnosis & treatment (2016) (started Jan 11, 2016)
Looking at table #1 of the 2016 article, a single bone lesion can be myeloma defining event. So (having asked that question before) it depends on the size of the bone lesion. How big does it have to be to count. I know in the case of my wife that she has small focal lesions, too small to measure, and are too small to be called "real" focal lesions per the criteria, but they can be seen on the scan. Fortunately, on the last PET scan, they were reported to be healing. I don't think I know the exact answer to the question on the size of the focal lesion. However, the full reference article from 2014 is on PubMed, but I do not have a subscription.
If the focal lesion is large enough, then your doctor would clearly be correct, and the start of treatment is in accordance with the latest acceptable standards, and the point of the treatment would be to knock down the multiple myeloma before you had worse bone damage.
I have no good reason to think that that your doctor would be wrong, however, only since you think the treatment might be early, you could look at it as follows. The only out I see is that if the doctor is overly aggressive on the size of the lesion, and its actually borderline or too small. So you could get a second opinion from another doctor who is a recognized multiple myeloma expert. Also, be sure that the radiologist who read the report is experienced with multiple myeloma, and try and get confirmed that the lesion most probably caused by multiple myeloma, or could it have been from some other condition, you only have one.
Delaying treatment, however, could also have a downside, in that if the lesion is the start of big problem, and advances quickly, you would be screwed. You could get another PET-CT scan, but I am thinking that most insurances cover it only once per year. If the lesion is small and you could check it again in six months or sooner (as directed by your doctor), that could potentially be an option, however, not an option without some risk. Good luck.
There is recent article posted on the forum by RadiantTiger. Here is the link to the thread:
Mayo Clinic article on diagnosis & treatment (2016) (started Jan 11, 2016)
Looking at table #1 of the 2016 article, a single bone lesion can be myeloma defining event. So (having asked that question before) it depends on the size of the bone lesion. How big does it have to be to count. I know in the case of my wife that she has small focal lesions, too small to measure, and are too small to be called "real" focal lesions per the criteria, but they can be seen on the scan. Fortunately, on the last PET scan, they were reported to be healing. I don't think I know the exact answer to the question on the size of the focal lesion. However, the full reference article from 2014 is on PubMed, but I do not have a subscription.
If the focal lesion is large enough, then your doctor would clearly be correct, and the start of treatment is in accordance with the latest acceptable standards, and the point of the treatment would be to knock down the multiple myeloma before you had worse bone damage.
I have no good reason to think that that your doctor would be wrong, however, only since you think the treatment might be early, you could look at it as follows. The only out I see is that if the doctor is overly aggressive on the size of the lesion, and its actually borderline or too small. So you could get a second opinion from another doctor who is a recognized multiple myeloma expert. Also, be sure that the radiologist who read the report is experienced with multiple myeloma, and try and get confirmed that the lesion most probably caused by multiple myeloma, or could it have been from some other condition, you only have one.
Delaying treatment, however, could also have a downside, in that if the lesion is the start of big problem, and advances quickly, you would be screwed. You could get another PET-CT scan, but I am thinking that most insurances cover it only once per year. If the lesion is small and you could check it again in six months or sooner (as directed by your doctor), that could potentially be an option, however, not an option without some risk. Good luck.
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JPC - Name: JPC
Re: Should I start treatment at this stage?
To add to JPC's comments, I think it would also be good to get a second opinion from a different specialist and radiologist.
I say this because your current situation sounds very similar to my situation 3 years ago where my imaging results showed that I had a single lesion that merited a diagnosis of symptomatic multiple myeloma. However, when I took my imaging results to a second and third specialist and their radiologists, they all agreed that no lesion actually existed and I was then simply diagnosed as having smoldering multiple myeloma. During that process, I was also able to diagnostically confirm the absence of a lytic lesion by getting a PET/CT scan.
To paraphrase one of my specialists "if you tell a radiologist that the patient has multiple myeloma, then they can often find lesions that simply aren't there".
I say this because your current situation sounds very similar to my situation 3 years ago where my imaging results showed that I had a single lesion that merited a diagnosis of symptomatic multiple myeloma. However, when I took my imaging results to a second and third specialist and their radiologists, they all agreed that no lesion actually existed and I was then simply diagnosed as having smoldering multiple myeloma. During that process, I was also able to diagnostically confirm the absence of a lytic lesion by getting a PET/CT scan.
To paraphrase one of my specialists "if you tell a radiologist that the patient has multiple myeloma, then they can often find lesions that simply aren't there".
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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