My husband had neck pain for 4 months on and off. In March a doctor asked him to get MRI of the neck done and put him on steroids for 12 days. He delayed getting the MRI done but started the steroids.
The pain reduced drastically the second day of steroids. However, after completing the course, when he got the MRI done, it showed a collapse of the C5 vertebra with 2 lytic lesions at C2 and D3 also. The radiologist suspected multiple myeloma.
Lots of blood work was done.
small M band in serum electrophoresis, absent in urine
normal beta -2 microglobulin
normal albumin, calcium and CBC.
free light chain ratio is normal, though kappa chains are mildly elevated.
IgG and IgA are normal, IgG is slighly low.
skeletal survey normal except fpr C5 collapse.
PET-CT shows multiple lytic lesions in spine,iliac bones and scapulae, but he has no other symptoms.
Surgery was done to fix the spine.
The oncologist says even though counts are normal, since there are lytic lesions in PET, he needs chemo with a 2- or 3-drug regimen.
I am not sure. I read somewhere that starting chemo early may have no advantage
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Re: Tough to stage
Hi nbijli,
Sorry to hear about your husband's situation. I'm not a doc, but here are my views on the situation.
What actually was the value of serum monoclonal protein level (M-spike, aka paraprotein, M-protein level)? You can find this in on the serum electrophoresis test (SPEP).
Has he had a bone marrow biopsy performed to confirm the multiple myeloma diagnosis? One wouldn't generally begin any treatment until one first understands where things stand from a bone marrow biopsy standpoint. There are some key details that come out of a bone marrow biopsy that help multiple myeloma specialists guide their treatment choices.
There are also forms of this disease where the multiple myeloma markers don't get expressed or are only slightly expressed in one's blood serum and urine, but the disease is still there within one's bones...and can still cause damage such as lytic lesions. A bone marrow biopsy is really the only way to sort this out.
Assuming that a bone marrow biopsy confirms the diagnosis of multiple myeloma and provides other key pieces of information, one would begin treatment if one has multiple lytic lesions present. Otherwise, these lytic lesions will likely just get worse and can cause very serious skeletal damage down the road.
The times when people delay treatment are when they have earlier stages of the disease known as MGUS and Smoldering multiple myeloma, where there is no organ damage such as lytic lesions that are present. That is not your husband's situation.
With this kind of existing bone damage and developing lesions, a specialist would likely suggest either a two or three drug combo treatment (it's not really the awful old-school "chemo" that you might be thinking of) and would likely also prescribe a series of bisphosphonate infusions such as Zometa to help strengthen the bones.
The most important thing that you and your husband can do is to seek out a top multiple myeloma specialist in your area. An oncologist that sees a handful of multiple myeloma patients is not the same as a multiple myeloma specialist that lives and breathes this disease on a daily basis. A multiple myeloma specialist will be better skilled in selecting just the right set of drugs for you husband's particular situation (there are a mind boggling number of drug/treatment choices) and will also be better skilled at adjusting doses and/or coming up with changes to a treatment plan, as required. If you let us know what city you live in, folks on this forum can make some recommendations of institutions and/or doctors to seek out.
Hope this helps and best of luck to you and your husband.
Sorry to hear about your husband's situation. I'm not a doc, but here are my views on the situation.
What actually was the value of serum monoclonal protein level (M-spike, aka paraprotein, M-protein level)? You can find this in on the serum electrophoresis test (SPEP).
Has he had a bone marrow biopsy performed to confirm the multiple myeloma diagnosis? One wouldn't generally begin any treatment until one first understands where things stand from a bone marrow biopsy standpoint. There are some key details that come out of a bone marrow biopsy that help multiple myeloma specialists guide their treatment choices.
There are also forms of this disease where the multiple myeloma markers don't get expressed or are only slightly expressed in one's blood serum and urine, but the disease is still there within one's bones...and can still cause damage such as lytic lesions. A bone marrow biopsy is really the only way to sort this out.
Assuming that a bone marrow biopsy confirms the diagnosis of multiple myeloma and provides other key pieces of information, one would begin treatment if one has multiple lytic lesions present. Otherwise, these lytic lesions will likely just get worse and can cause very serious skeletal damage down the road.
The times when people delay treatment are when they have earlier stages of the disease known as MGUS and Smoldering multiple myeloma, where there is no organ damage such as lytic lesions that are present. That is not your husband's situation.
With this kind of existing bone damage and developing lesions, a specialist would likely suggest either a two or three drug combo treatment (it's not really the awful old-school "chemo" that you might be thinking of) and would likely also prescribe a series of bisphosphonate infusions such as Zometa to help strengthen the bones.
The most important thing that you and your husband can do is to seek out a top multiple myeloma specialist in your area. An oncologist that sees a handful of multiple myeloma patients is not the same as a multiple myeloma specialist that lives and breathes this disease on a daily basis. A multiple myeloma specialist will be better skilled in selecting just the right set of drugs for you husband's particular situation (there are a mind boggling number of drug/treatment choices) and will also be better skilled at adjusting doses and/or coming up with changes to a treatment plan, as required. If you let us know what city you live in, folks on this forum can make some recommendations of institutions and/or doctors to seek out.
Hope this helps and best of luck to you and your husband.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Tough to stage
Thanks a lot. Biopsy does show plasmacytosis, albeit with 4-5% plasma cells, some cells being abnormal.
Diagnosis is almost confirmed and, like you said, the doctor has given us a choice of the 2-drug or 3-drug regimen. We are based in India and under the care of one of the best myeloma specialists here.
My only concern is that he seems to be taking it really slow. He seems to be in no hurry to start treatment, though it's been 3 weeks since suspicion. Biopsy reports came in last week, and he asked us to think till this week.
Meanwhile, my husband has been operated on for a vertebral collapse 2 weeks ago so we are getting a little tense.
Do you have any idea if this kind of delay is acceptable?
Thanks once again for all the info you gave me.
Diagnosis is almost confirmed and, like you said, the doctor has given us a choice of the 2-drug or 3-drug regimen. We are based in India and under the care of one of the best myeloma specialists here.
My only concern is that he seems to be taking it really slow. He seems to be in no hurry to start treatment, though it's been 3 weeks since suspicion. Biopsy reports came in last week, and he asked us to think till this week.
Meanwhile, my husband has been operated on for a vertebral collapse 2 weeks ago so we are getting a little tense.
Do you have any idea if this kind of delay is acceptable?
Thanks once again for all the info you gave me.
Re: Tough to stage
nbijli,
If you just got the biopsy results back last week, it hasn't been that long since having that critical test and it sounds like you will be talking to the doctor this week. Also, have you received all of your genetic studies back from the bone marrow biopsy (FISH results, cytogenetics, etc)? If not, your doctor may be waiting on those additional test results before recommending a specific treatment approach. These genetic tests usually take longer to run than the basic measurements such as the plasma cell %, etc.
If you just got the biopsy results back last week, it hasn't been that long since having that critical test and it sounds like you will be talking to the doctor this week. Also, have you received all of your genetic studies back from the bone marrow biopsy (FISH results, cytogenetics, etc)? If not, your doctor may be waiting on those additional test results before recommending a specific treatment approach. These genetic tests usually take longer to run than the basic measurements such as the plasma cell %, etc.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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