Hi 4 months ago my brother in-law donated blood, on the way home he was contacted by the blood bank and told that he had paraprotiens in his blood and he had to go to a doctor asap.
To cut a long story short he saw a specialist, had a bone marrow biopsy, and the results came back a 10 count, which the doctor said was "borderline" but because he "looked fit and healthy" they would not start any treatment and to come back in 6 months for another blood test.
I spoke to him yesterday, he has aching in his bones, and is very tired, I feel that he should see another doctor or at least go back for another test.
Any advise would be greatly appreciated.
Regards Mal.
Forums
6 posts
• Page 1 of 1
Re: Need some advise
The hematologist who did the BMB would normally order a battery of blood and urine tests to determine whether it is multiple myeloma or one of its precursor states i.e. MGUS or smoldering myeloma. A skeletal survey is also usually done right away and perhaps an MRI. A good source of info. is the International Myeloma Foundation's hotline. Call it. Also, I would get checked out by an actual myeloma expert. Good luck.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Need some advise
Hi maldugs, I am going through the exact same thing, was told by a doctor I had the paraprotrins too and was referred to a haemotologist, had bone marrow test and a skeletal survey. At the time i had no symptoms either. I am waiting to have an MRI on Jan 20th but have noticed my bones have started to ache too. My skeletal survey said I had bone lesions, all very confusing I know but as my haemotologist never returns my calls I will be taking all my results when I get the MRI for a second opinion. Surely, if that was 4 months ago when your bil had this he has had some answers? Cheers
Re: Need some advise
This is all good and accurate advice. The key is to make sure there is no active end-organ damage from the myeloma (i.e. no high calcium, kidney damage, low blood counts, or bone lesions). For patients with bone aches and negative xrays I often get MRI's as this is a more sensitive test for myeloma bone disease. If there is no end-organ damage then close observation is the current recommendation-- this consists of follow-up exams and labwork every 3-6 months initially, which can eventually be spaced out further if everything remains stable over time. A visit with a myeloma specialist can always help if things remain unclear.
-
Dr. Adam Cohen - Name: Adam D. Cohen, M.D.
Beacon Medical Advisor
Re: Need some advise
Hi Mal,
Typically BM results are considered multiple myeloma when it is greater than 10%..thus the borderline dx of the MD.
The other criteria that are looked at are what are called CRAB...which stands for hypercalcicemia, renal, anemia and bone....the MD would be looking for what is called end organ damage, which would result from hyperCalcemia ..which can cause Renal dysfunction and Anemia which results from the proteins that multiple myeloma produces displacing red blood cells that carry hemoglobin and oxygen, along with B is for bone and bone lesions. He only needs one of the CRAB criteria to be given drugs for multiple myeloma. i.e. one equals end organ damage present. Additionally, one of the CRAB criteria is the determinant of whether to treat as well.
You or your brother may want to insist on seeing/ asking for those blood tests results. One of the new tests which is now considered gold standard..is called a Free Light Chain Assay...this test captures 98% of multiple myeloma when present. You might want to ask if this was performed and get the results of it.
Another test you may wish to request is a FISH analysis. This test, is done on BM and will help to stratify the disease in terms of risk when it comes to therapy/response. It allows the clinician to make better therapeutic choices for the stage of risk the disease presents as in an individual patient.
There are also other tests such as SPEP and UPEP which are serum and urine tests, which will provide additional information, but the Free Light Chain Test is best.
You did not say what part of the country you are in..but the Myeloma Foundation has a consortium of 16 institutions which has multiple myeloma experts and that is where you may wish to get a second opinion.
"16 member institutions. Barbara Ann Karmanos Cancer Institute, Baylor Charles A. Sammons Cancer Center at Dallas, City of Hope, Dana-Farber Cancer Institute, Emory University's Winship Cancer Institute, the John Theurer Cancer Center at Hackensack University Medical Center, H. Lee Moffitt Cancer Center & Research Institute, Mayo Clinic, Ohio State University, Mount Sinai School of Medicine, Sarah Cannon Research Institute, University Health Network (Princess Margaret Hospital), University of California-San Francisco, University of Chicago, University of Michigan, Virginia Cancer Specialists, and Washington University in St. Louis."
Hope this helps.....be persistence and a strong patient advocate...it ensures peace of mind and quality of life along with excellent care.
good luck
suzierose
Typically BM results are considered multiple myeloma when it is greater than 10%..thus the borderline dx of the MD.
The other criteria that are looked at are what are called CRAB...which stands for hypercalcicemia, renal, anemia and bone....the MD would be looking for what is called end organ damage, which would result from hyperCalcemia ..which can cause Renal dysfunction and Anemia which results from the proteins that multiple myeloma produces displacing red blood cells that carry hemoglobin and oxygen, along with B is for bone and bone lesions. He only needs one of the CRAB criteria to be given drugs for multiple myeloma. i.e. one equals end organ damage present. Additionally, one of the CRAB criteria is the determinant of whether to treat as well.
You or your brother may want to insist on seeing/ asking for those blood tests results. One of the new tests which is now considered gold standard..is called a Free Light Chain Assay...this test captures 98% of multiple myeloma when present. You might want to ask if this was performed and get the results of it.
Another test you may wish to request is a FISH analysis. This test, is done on BM and will help to stratify the disease in terms of risk when it comes to therapy/response. It allows the clinician to make better therapeutic choices for the stage of risk the disease presents as in an individual patient.
There are also other tests such as SPEP and UPEP which are serum and urine tests, which will provide additional information, but the Free Light Chain Test is best.
You did not say what part of the country you are in..but the Myeloma Foundation has a consortium of 16 institutions which has multiple myeloma experts and that is where you may wish to get a second opinion.
"16 member institutions. Barbara Ann Karmanos Cancer Institute, Baylor Charles A. Sammons Cancer Center at Dallas, City of Hope, Dana-Farber Cancer Institute, Emory University's Winship Cancer Institute, the John Theurer Cancer Center at Hackensack University Medical Center, H. Lee Moffitt Cancer Center & Research Institute, Mayo Clinic, Ohio State University, Mount Sinai School of Medicine, Sarah Cannon Research Institute, University Health Network (Princess Margaret Hospital), University of California-San Francisco, University of Chicago, University of Michigan, Virginia Cancer Specialists, and Washington University in St. Louis."
Hope this helps.....be persistence and a strong patient advocate...it ensures peace of mind and quality of life along with excellent care.
good luck
suzierose
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
6 posts
• Page 1 of 1