I made a mistake with family. At least I think I did.
My doctor scheduled an appointment with a hematologist because I have monoclonal gammopathy and numerous symptoms that sort of / kind of look like multiple myeloma. I've known about the monoclonal gammopathy for a few years, and it hasn't worried me a bit. Since my doc took a blood sample, wouldn't that have revealed that I don't have myeloma?
My visit to the hematologist isn't until June, and I'd like to tell the family to calm down. I'm not worried. But they keep telling me it doesn't necessarily show up in normal blood work. Now they all want me to insist on having the appointment moved up, which I'm not willing to do.
Also, I can't have an MRI because I have a pacemaker (for a fairly minor heart problem). What can I say to these crazy loving people?
(Symptoms: fatigue, pneumonia, excruciating lower back pain when active, some chest pain, nausea, concentration problems – but most of this could also be a thousand other things, like the seizure meds I've taken for 50 years; I'm 62.)
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Re: How to calm the family down?
I was hospitalized with renal failure last September. Blood tests were inconclusive as to the cause. One of the doctors suspected multiple myeloma though. He arranged for a bone marrow biopsy. It was done by a hematologist while I was lying in my hospital room and I think took about 15-20 minutes. The results of the biopsy confirmed what the first doctor had suspected. I had my first chemo treatment the next day.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: How to calm the family down?
cdnirene, thanks – I hope you're doing well. Not sure this would calm my family down though!
Re: How to calm the family down?
My kidneys recovered within 3 months thanks to the chemo, Harry, but it was upsetting at the time because the renal specialist did not know if they would ever recover. However, I should have gone to my family doctor sooner than I did. I just didn't think any serious was wrong. My main symptom was fatigue.
I don't see the advantage of waiting when you can get the appointment moved up. The disadvantage is that you live with the uncertainty longer and you have excruciating pain, which the hematologist may have been able to treat sooner.
I don't see the advantage of waiting when you can get the appointment moved up. The disadvantage is that you live with the uncertainty longer and you have excruciating pain, which the hematologist may have been able to treat sooner.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: How to calm the family down?
Harry,
What exact tests did you have?
On the face of it, saying that you have a monoclonal gammopathy, severe back pain, and pneumonia does beg to check more thoroughly for multiple myeloma. Why wouldn't you pull in your appointment with a hematologist? I'm with your family on this one.
BTW, an MRI is not the only game in town for imaging. You can alternatively get a PET/CT or a skeletal xray survey - both of which won't affect a pacemaker.
What exact tests did you have?
On the face of it, saying that you have a monoclonal gammopathy, severe back pain, and pneumonia does beg to check more thoroughly for multiple myeloma. Why wouldn't you pull in your appointment with a hematologist? I'm with your family on this one.
BTW, an MRI is not the only game in town for imaging. You can alternatively get a PET/CT or a skeletal xray survey - both of which won't affect a pacemaker.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How to calm the family down?
If I were in your position, given that you know you have MGUS and the symptoms you describe, I would move up the appointment if you have the opportunity to do so. That may be the best way to calm your family down – get to the bottom of this sooner.
I would also keep in mind that, while the blood test your doctor ran may very well indicate you have some kind of blood cancer and maybe myeloma, your GP doctor may not tell you this or be certain just what it is. My GP doctor did the same thing. He also ran a bunch of labs on me and ruled out the things that he could address and take care of, then set me up with an appointment with a hematologist. He was going to defer to the specialist to nail down for certain just what my condition was and give me the news, which I feel was the right way to handle this.
The hematologist looked at the same labs and it only took him 15 seconds to say we need to do a bone marrow biopsy. Later I was able to look at the notes he made in my medical record that day and he indicated two things – myeloma or plasma cell leukemia – and the bone marrow would help confirm his suspensions. He did not mention anything that day about that though. We made an appointment for two weeks later to go over the results.
I never made it to that appointment. Three days later, I went to the ER and was admitted to the hospital for kidney failure from high calcium. I had myeloma.
I hope this turns out to be nothing for you. Best wishes,
Eric
I would also keep in mind that, while the blood test your doctor ran may very well indicate you have some kind of blood cancer and maybe myeloma, your GP doctor may not tell you this or be certain just what it is. My GP doctor did the same thing. He also ran a bunch of labs on me and ruled out the things that he could address and take care of, then set me up with an appointment with a hematologist. He was going to defer to the specialist to nail down for certain just what my condition was and give me the news, which I feel was the right way to handle this.
The hematologist looked at the same labs and it only took him 15 seconds to say we need to do a bone marrow biopsy. Later I was able to look at the notes he made in my medical record that day and he indicated two things – myeloma or plasma cell leukemia – and the bone marrow would help confirm his suspensions. He did not mention anything that day about that though. We made an appointment for two weeks later to go over the results.
I never made it to that appointment. Three days later, I went to the ER and was admitted to the hospital for kidney failure from high calcium. I had myeloma.
I hope this turns out to be nothing for you. Best wishes,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How to calm the family down?
Given your symptoms, I would not wait, frankly. But if you do, you could at least check if you are anemic, which is another classic sign of the presence of myeloma.
I don't know if it is the same in States, but in Italy you can have a simple blood test done in a private lab or at the pharmacy cheaply and with same day results.
I don't know if it is the same in States, but in Italy you can have a simple blood test done in a private lab or at the pharmacy cheaply and with same day results.
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: How to calm the family down?
Hi Harry,
So sorry you are going through this. If you read through some of the posts on the Beacon, you'll find that getting to a myeloma diagnosis is a process, and it can be frustratingly slow.
One thing you might do to calm your family a bit, is to call your original doctor and ask him what he saw in the tests he ran. Do you possibly have any other CRAB symptoms besides the bone pain. If you do, I might agree with your family. If you don't, or if your doctor doesn't think it is necessary to rush, then I'd wait until your June appointment.
My understanding is that typically myeloma is a slow moving cancer. We suspect that EJ had smoldered for at least five years before his diagnosis. He was diagnosed when he had to have emergency surgery, and then they had to wait almost eight weeks until his wound healed before they could start him on treatment. It has been almost five years now, and he is still doing fine.
Hope that helps.
Lyn
So sorry you are going through this. If you read through some of the posts on the Beacon, you'll find that getting to a myeloma diagnosis is a process, and it can be frustratingly slow.
One thing you might do to calm your family a bit, is to call your original doctor and ask him what he saw in the tests he ran. Do you possibly have any other CRAB symptoms besides the bone pain. If you do, I might agree with your family. If you don't, or if your doctor doesn't think it is necessary to rush, then I'd wait until your June appointment.
My understanding is that typically myeloma is a slow moving cancer. We suspect that EJ had smoldered for at least five years before his diagnosis. He was diagnosed when he had to have emergency surgery, and then they had to wait almost eight weeks until his wound healed before they could start him on treatment. It has been almost five years now, and he is still doing fine.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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