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Re: Not yet diagnosed but tests are bad
Hi Noway, Just wondering if you knew yet if your husband had active myeloma, or smoldering myeloma? HOPE you will keep reading the beacon, and also stay in touch with your oncologist. You may want to have medical help along with your laudable efforts at living a very healthy lifestyle! We have a wonderful cancer centre here, and they will do their best to help!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
Hi Nancy,
Thank you for following up. I am not sure what's wrong with MDs here. My hubby was scheduled for biopsy (although he was not sure it is really necessary as tests basically indicate everything) but never received a call to go for one. So he called his MD today and then again was informed that he needs to do a biopsy before anything can be diagnosed!!! Maybe I am just being over too sensitive and frustrated, but time is running out and all we get is just another test another test and another test while many people have got on the treatments just getting blood and urine tests donwe
So I am not sure at this point what else to do...just sitting and waiting is not an option.
Thank you for following up. I am not sure what's wrong with MDs here. My hubby was scheduled for biopsy (although he was not sure it is really necessary as tests basically indicate everything) but never received a call to go for one. So he called his MD today and then again was informed that he needs to do a biopsy before anything can be diagnosed!!! Maybe I am just being over too sensitive and frustrated, but time is running out and all we get is just another test another test and another test while many people have got on the treatments just getting blood and urine tests donwe
So I am not sure at this point what else to do...just sitting and waiting is not an option.-
noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
Hi Noway...nice to hear from you too, although I guess you and your husband are getting stressed out! You need to have the Bone marrow biopsy (BMB) to get the definite diagnosis of the multiple myeloma. They will be looking for mutant plasma cells and other markers in the aspirate and the bone segment taken. It is NOT anyone's favourite test, (my favorite is the serum free light chain test, since it tells so much about the myeloma protein, and is way more sensitive than the SPEP test. I was diagnosed through the SPEP test, other blood tests and the BMB. The serum free light chain test wasn't yet in wide usage here in 2009, or at least I don't see it on my lab results back on the initial tests). The oncologists wouldn't start any treatments for myeloma without the BMB confirming it.
Anyhow, there are just reams of posts on the Beacon about biopsies...I even wrote a column about the topic, and got a big response! I personally prefer to get a light sedation for it, although others may differ about that. And do ask for copies of your lab results, since they are a good record for you to see how everything is coming along.
Please keep us posted, and really best wishes to you and your family! Write me a note too, if you want to. I realize that getting a cancer diagnosis is hugely disruptive, but 'stuff' happens sometimes and we just have to try to cope up as best we can. Maybe it's not as bad as you think..wait on the tests!
Anyhow, there are just reams of posts on the Beacon about biopsies...I even wrote a column about the topic, and got a big response! I personally prefer to get a light sedation for it, although others may differ about that. And do ask for copies of your lab results, since they are a good record for you to see how everything is coming along.
Please keep us posted, and really best wishes to you and your family! Write me a note too, if you want to. I realize that getting a cancer diagnosis is hugely disruptive, but 'stuff' happens sometimes and we just have to try to cope up as best we can. Maybe it's not as bad as you think..wait on the tests!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
Thank you Nancy,
we do have our moments now. It is still not easy to go to bed and wake up as the thoughts are so messy in our heads. I hope for the best. I am also not convinced that biopsy is the only way to diagnose. You are right about serum tests. I am pretty sure these are more than enough. If you look at multiple myeloma medical explanation and description, blood and serum tests are the ones that indicate multiple myeloma and the progress of multiple myeloma is also monitored according to those lab tests...no one is doing biopsy to see if multiple myeloma is spreading. I also do not think it is mandatory to do biopsy in order to get multiple myeloma treatment...this is just insane. I am thinking that biopsy is done for research purposes and to indicate the stage (so called).
Thank ypu.
we do have our moments now. It is still not easy to go to bed and wake up as the thoughts are so messy in our heads. I hope for the best. I am also not convinced that biopsy is the only way to diagnose. You are right about serum tests. I am pretty sure these are more than enough. If you look at multiple myeloma medical explanation and description, blood and serum tests are the ones that indicate multiple myeloma and the progress of multiple myeloma is also monitored according to those lab tests...no one is doing biopsy to see if multiple myeloma is spreading. I also do not think it is mandatory to do biopsy in order to get multiple myeloma treatment...this is just insane. I am thinking that biopsy is done for research purposes and to indicate the stage (so called).
Thank ypu.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
noway wrote:
> Hi Nancy,
>
> Thank you for following up. I am not sure what's wrong with MDs here. My
> hubby was scheduled for biopsy (although he was not sure it is really
> necessary as tests basically indicate everything) but never received a call
> to go for one. So he called his MD today and then again was informed that
> he needs to do a biopsy before anything can be diagnosed!!! Maybe I am just
> being over too sensitive and frustrated, but time is running out and all we
> get is just another test another test and another test while many people
> have got on the treatments just getting blood and urine tests donwe
> So I am not sure at this point what else to do...just sitting and waiting
> is not an option.
If I were in your position, I would contact my MD and/or hospital and get the phone number of the scheduler for the facility where the procedure is being done. I would then talk to the scheduler and get it scheduled on their books.
BTW, while some folks certainly have pain during a bone marrow biopsy, I hardly had any. I had no sedative except for a local in the area of the biopsy. I drove myself home afterwards. I was fretting quite a bit about the procedure going in and then thinking to myself as I left the hospital "that was it???". I didn't even have to take an Advil that night. I know everyone is different, but for me it was a breeze and I have zero anxiety about getting another one done in the future.
Hope it works out for your hubby.
> Hi Nancy,
>
> Thank you for following up. I am not sure what's wrong with MDs here. My
> hubby was scheduled for biopsy (although he was not sure it is really
> necessary as tests basically indicate everything) but never received a call
> to go for one. So he called his MD today and then again was informed that
> he needs to do a biopsy before anything can be diagnosed!!! Maybe I am just
> being over too sensitive and frustrated, but time is running out and all we
> get is just another test another test and another test while many people
> have got on the treatments just getting blood and urine tests donwe
> So I am not sure at this point what else to do...just sitting and waiting
> is not an option.
If I were in your position, I would contact my MD and/or hospital and get the phone number of the scheduler for the facility where the procedure is being done. I would then talk to the scheduler and get it scheduled on their books.
BTW, while some folks certainly have pain during a bone marrow biopsy, I hardly had any. I had no sedative except for a local in the area of the biopsy. I drove myself home afterwards. I was fretting quite a bit about the procedure going in and then thinking to myself as I left the hospital "that was it???". I didn't even have to take an Advil that night. I know everyone is different, but for me it was a breeze and I have zero anxiety about getting another one done in the future.
Hope it works out for your hubby.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not yet diagnosed but tests are bad
Hi Noway...I know it is a LOT to take in to learn about myeloma and it's treatments. Have you got a set of those little booklets that cover many topics on this disease? You can e-mail the INternational MyELOMa FDN. (IMF) and they will send you a set. They are also online...I saw someone post one the other day. I have been reading since 'day one' or sooner about this, and even now still feel I am on a learning curve with it.
I am not a doctor, but I could think of two reasons why bone marrow biopsies are used for dx purposes. One is that the protein in the blood is like 'circumstantial' evidence of the cancer cells. The cancer itself is in the marrow...the BMB shows the cancer cells, on slides under a microscope (it is a pathology test). Also,cytogenetic testing is done on the marrow. As well as 'staging', 'risk stratification' can also be done. Cytogenetic testing will show the oncologists a lot about your husbands type of myeloma too.
It literally can be a 'pain' to get a BMB done, but your doctors wouldn't have ordered it without a reason. Lots of monitoring is done through blood tests though, thankfully.
Hope it all goes well with you!
I am not a doctor, but I could think of two reasons why bone marrow biopsies are used for dx purposes. One is that the protein in the blood is like 'circumstantial' evidence of the cancer cells. The cancer itself is in the marrow...the BMB shows the cancer cells, on slides under a microscope (it is a pathology test). Also,cytogenetic testing is done on the marrow. As well as 'staging', 'risk stratification' can also be done. Cytogenetic testing will show the oncologists a lot about your husbands type of myeloma too.
It literally can be a 'pain' to get a BMB done, but your doctors wouldn't have ordered it without a reason. Lots of monitoring is done through blood tests though, thankfully.
Hope it all goes well with you!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
Hi, I agree with Nancy completely. The BMB is the gold standard for diagnosing plasma cell diseases and allows the doctor to know whether it is MGUS or full blown myeloma or something else. Many of us have different forms of myeloma and the BMB is instrumental in classifying one's type. I am light chain only and my SPEP's are totally normal....but my marrow was heavily infiltrated. I have had four BMB's. They are no worse than a trip to the dentist for most of us.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Not yet diagnosed but tests are bad
Nancy is right, in order for an official diagnosis , they need a BMB.
In my case, I had to have a biopsy of a plasmasytoma . It was one of the worst experiences of my life.
But, in order to have an official diagnosis , that's what you have to do.
Best to you,
Christina
In my case, I had to have a biopsy of a plasmasytoma . It was one of the worst experiences of my life.
But, in order to have an official diagnosis , that's what you have to do.
Best to you,
Christina
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Christina1952
Re: Not yet diagnosed but tests are bad
You should be seeing an oncologist right now. The MD probably doesnt know much about cancer. The BMB is NOT the test to find if you have it. My progression was blood work , then pet scan, then the BMB to see if it spread that far. That will give them an idea of how to proceed. This is NOT stuff your MD can do. And for the record. The last BMB I got they heard me outside thge office and down the hall at the hospital cause I was screaming that loud! I hate them things! On a positive note. I was stage 4 and had 8 tumors in my hip. I had to have it replaced. I had radiation, treatment and Stem Cell Transplant. Been in remission for over two years! There is hope with this desease !!!!!!!!!
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