Hello All,
I presently, after ASCT, have a (almost) partial remission. I am 120 days post transplant. I am on a clinical trial for 3 years on low dose Revlimid. I had MGUS for 12 years . The oncologist treating me did nothing but take my blood and tell me " your blood work is good." Every 6 months, then yearly for 12 yrs.
When I was diagnosed with multiple myeloma last December, it was only by chance. I was going to physical therapy for a weakness in my arm and the PT told me to see a neurologist . I had a series of tests and skeletal x-rays, where they found that I have lesions on most of my bones -- skull, ribs, hips, clavicles, and spine.
What I'm trying to say is, if you have a diagnosis of MGUS, do not wait for 12 yrs like I did. Be pro- active with your care. Encourage the doctor after 3-5 yrs after receiving a diagnosis of MGUS to have a series of x-rays and a bone marrow biopsy to detect early multiple myeloma.
I wish you all many years of good health and happiness. Most importantly, don't put off plans for the future, make sure you enjoy each and everyday.
Sincerely , Julie
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Re: If you have MGUS, proactively check for myeloma
Hi Julie R,
Thank you so very much for this very important reminder and message to be proactive to those with MGUS. It's easy to become less concerned as the months turn into years, especially upon hearing "your blood work is good" at each followup. There is more to monitoring this disease continuum than just regular blood work.
I hope you are doing well and I wish you all of the very best and thanks again !
Dana H.
Thank you so very much for this very important reminder and message to be proactive to those with MGUS. It's easy to become less concerned as the months turn into years, especially upon hearing "your blood work is good" at each followup. There is more to monitoring this disease continuum than just regular blood work.
I hope you are doing well and I wish you all of the very best and thanks again !
Dana H.
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: If you have MGUS, proactively check for myeloma
Did you have a bone biopsy done in the beginning?
Re: If you have MGUS, proactively check for myeloma
When I was first diagnosed with MGUS, I received an initial bone scan and a lot of blood work. A bone marrow biopsy was not done due to the fact that I did not have systems.
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ViolaB
Re: If you have MGUS, proactively check for myeloma
I've been diligent about checking the blood for the M spike for seven years. It's there, it varies, but not a problem unless there's a big increase, so I'm told. The high calcium in the blood and urine is "idiopathic" - and, yes, I am taking a diuretic to reduce the calcium so I don't get more kidney stones. There's quite a number now in both kidneys.
I have osteopenia, even though I don't have any of the WHO criteria for it, but I am post menopausal. Try getting a dose of Zometa approved - I'm down to once every few years now. One bone lesion. No anemia. Last bone marrow biopsy was years ago - 5%.
I already hate doctors - surprised? There is no "coordination of care" anywhere. The worry will kill me before the disease.
I have osteopenia, even though I don't have any of the WHO criteria for it, but I am post menopausal. Try getting a dose of Zometa approved - I'm down to once every few years now. One bone lesion. No anemia. Last bone marrow biopsy was years ago - 5%.
I already hate doctors - surprised? There is no "coordination of care" anywhere. The worry will kill me before the disease.
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lmtlsjjjr
Re: If you have MGUS, proactively check for myeloma
Julie,
I believe you make a great case for why people need to be proactive with their health care when they have something like MGUS. For me, that means that would mean investing the time in researching the condition or disease using reputable resources like the Myeloma Beacon, learning about how the disease is staged, treated, and what tests are commonly done and why to monitor and track disease progress, and -- at a basic level without the knowledge of a medical degree -- what these test results tell or do not tell about the disease.
This would help everybody have more informed discussions with their treatment provider and I think is it good to know just what a doctor is doing or not doing. It will also help with the decision to seek a second opinion or not and, when a second opinion is sought, be able to compare the two options from with some knowledge.
Being proactive is not the same as being a hypochondriac.
I believe you make a great case for why people need to be proactive with their health care when they have something like MGUS. For me, that means that would mean investing the time in researching the condition or disease using reputable resources like the Myeloma Beacon, learning about how the disease is staged, treated, and what tests are commonly done and why to monitor and track disease progress, and -- at a basic level without the knowledge of a medical degree -- what these test results tell or do not tell about the disease.
This would help everybody have more informed discussions with their treatment provider and I think is it good to know just what a doctor is doing or not doing. It will also help with the decision to seek a second opinion or not and, when a second opinion is sought, be able to compare the two options from with some knowledge.
Being proactive is not the same as being a hypochondriac.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: If you have MGUS, proactively check for myeloma
Julie - Thank you for posting this, although I am truly sorry you have met with this news.
I'd like to ask, what were your blood levels that your doctor said were "good"? I assume your M-spike stayed stable and was under 1.5?
I was just diagnosed with MGUS 3 months ago and chose not to have the bone biopsy done. I am due to see the hematologist/oncologist tomorrow. M-spike 1.0 and stable, but I've noticed my immunoglobulin M is below normal.
I have neuropathy, back, hip, knee, and leg pain and I am frequently anemic, so it would be difficult for me to know it if I transitioned to multiple myeloma. So perhaps I should have that biopsy done after all.
If you don't mind, could you share how your doctor determined you were MGUS? i.e., which tests and what were the numbers?
I'd like to ask, what were your blood levels that your doctor said were "good"? I assume your M-spike stayed stable and was under 1.5?
I was just diagnosed with MGUS 3 months ago and chose not to have the bone biopsy done. I am due to see the hematologist/oncologist tomorrow. M-spike 1.0 and stable, but I've noticed my immunoglobulin M is below normal.
I have neuropathy, back, hip, knee, and leg pain and I am frequently anemic, so it would be difficult for me to know it if I transitioned to multiple myeloma. So perhaps I should have that biopsy done after all.
If you don't mind, could you share how your doctor determined you were MGUS? i.e., which tests and what were the numbers?
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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
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