Hi Jessi,
I think that having a skeletal X-ray survey is standard for many of us in Canada. I have had one once a year since my diagnosis, about 9 I think. Although they are not as thorough as a PET/CT in investigating damage to the bones, they are a standard unless you have other worse problems that would indicate the PET/CT scan. That is my knowledge of it anyways.
In my case, the results are examined by a radiologist, who sends a report over to my doctor. Although I have a lot of lytic lesions, they appear to be stable, and I even had some healing occur after the compression fractures. Of course, I always ask for a copy of the report, but maybe you can read it online. The bone survey is part of investigating the diagnosis for myeloma.
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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: Lambda FLC very high; has my MGUS progressed?
Good morning,
Another test was added again, a fully body CT scan.
The results will not be available at my results meeting with my oncologist/hematologist. The test is a week after.
It doesn’t make sense to me if it’s not available in time.
Jessi
Another test was added again, a fully body CT scan.
The results will not be available at my results meeting with my oncologist/hematologist. The test is a week after.
It doesn’t make sense to me if it’s not available in time.
Jessi
Re: Lambda FLC very high; has my MGUS progressed?
Good morning all,
I thought I would update my story after my meeting with the hematologist yesterday.
It turns out I have active multiple myeloma and I have also tested positive for the amyloid protein as well. The skeletal X-ray showed 2 lesions on the right hip bone. I'm still waiting for CT scan to see how severe. Also waiting for the test results to return to determine which type of amyloidosis I have.
It is overwhelming.
I don’t know much about the amyloid part; I am still trying to figure it out.
I go back in 5 days (blood tests will be in by then) to talk about treatment.
Thanks for taking time to read. It’s helpful even telling someone at this point.
Jessi
I thought I would update my story after my meeting with the hematologist yesterday.
It turns out I have active multiple myeloma and I have also tested positive for the amyloid protein as well. The skeletal X-ray showed 2 lesions on the right hip bone. I'm still waiting for CT scan to see how severe. Also waiting for the test results to return to determine which type of amyloidosis I have.
It is overwhelming.
I don’t know much about the amyloid part; I am still trying to figure it out.
I go back in 5 days (blood tests will be in by then) to talk about treatment.
Thanks for taking time to read. It’s helpful even telling someone at this point.
Jessi
Re: Lambda FLC very high; has my MGUS progressed?
Jessi,
I am sorry to hear about the diagnosis! Living in Ontario, there are myeloma specialists you can turn to. There are about 13 cancer centres in Ontario, and they do coordinate with specialists, even if they do not all have myeloma specialists. One center that does have specialists is PrIncess Margaret Hospital in Toronto.
I hope that helps. I live in Alberta and have access to myeloma specialists here when and if I need the help. We even have a doctor here who specializes in amyloidosis patients.
I am sorry to hear about the diagnosis! Living in Ontario, there are myeloma specialists you can turn to. There are about 13 cancer centres in Ontario, and they do coordinate with specialists, even if they do not all have myeloma specialists. One center that does have specialists is PrIncess Margaret Hospital in Toronto.
I hope that helps. I live in Alberta and have access to myeloma specialists here when and if I need the help. We even have a doctor here who specializes in amyloidosis patients.
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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: Lambda FLC very high; has my MGUS progressed?
I’m at the regional cancer centre in Ontario. I’m with a hematologist and I have an oncologist, both working together for a treatment plan.
Take care,
Jessi
Take care,
Jessi
Re: Lambda FLC very high; has my MGUS progressed?
Good afternoon folks,
I finally have all test results back and they have confirmed active multiple myeloma and amyloidosis.
I start treatment on Wednesday; 28-day cycle CyBorD (cyclophosphamide, bortezomib, and dexamethasone). I’m also in a clinical trial with the drug daratumumab (Darzalex). Six cycles.
My free light chains are still very high, over 1700. But hopefully once I start It will come down.
The amyloidosis damage is only at the beginning, so not a huge amount of deposits in heart and kidney. Mostly in my soft tissue, tongue, throat.
It takes a while to digest this kind of news, but I’m ready to get fighting this in hopes of a stem cell transplant in the near future. We have that end game in mind in hopes of remission.
I hope everyone is doing well themselves. I’ll post my experiences if I think it could help others. It has certainly helped me reading your stories; I feel like I’m not alone in this and that there are others who understand.
Talk to you all soon.
I finally have all test results back and they have confirmed active multiple myeloma and amyloidosis.
I start treatment on Wednesday; 28-day cycle CyBorD (cyclophosphamide, bortezomib, and dexamethasone). I’m also in a clinical trial with the drug daratumumab (Darzalex). Six cycles.
My free light chains are still very high, over 1700. But hopefully once I start It will come down.
The amyloidosis damage is only at the beginning, so not a huge amount of deposits in heart and kidney. Mostly in my soft tissue, tongue, throat.
It takes a while to digest this kind of news, but I’m ready to get fighting this in hopes of a stem cell transplant in the near future. We have that end game in mind in hopes of remission.
I hope everyone is doing well themselves. I’ll post my experiences if I think it could help others. It has certainly helped me reading your stories; I feel like I’m not alone in this and that there are others who understand.
Talk to you all soon.
Re: Lambda FLC very high; has my MGUS progressed?
Jessi, thanks so much for sharing this update, even though it was not what you hoped for. It does sound like you are getting good treatment though. It's good to know that as well as taking CyBorD, you will be on a clinical trial with daratumumab. Also it sounds like the investigations you have had into the myeloma and the amyloidosis have been really thorough. Best wishes and hope that these treatments start to help you right away.
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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: Lambda FLC very high; has my MGUS progressed?
Just wanted to give an update:
It’s been 10 weeks of treatment and so far so good. I'm handling treatment without too many side effects.
Also, there has been great improvement already. My free light numbers went from over 1700 to 32.5. The doctors are pleased, and so am I. I'm more hopeful than before.
Thanks for listening. Hope this helps others.
Jessi
It’s been 10 weeks of treatment and so far so good. I'm handling treatment without too many side effects.
Also, there has been great improvement already. My free light numbers went from over 1700 to 32.5. The doctors are pleased, and so am I. I'm more hopeful than before.
Thanks for listening. Hope this helps others.
Jessi
Re: Lambda FLC very high; has my MGUS progressed?
Jessi,
It's always nice to hear about good results! Your numbers seem incredible to me.
It's always nice to hear about good results! Your numbers seem incredible to me.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
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