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Re: Not sure of my diagnosis - what should I do next?
I think I would also be asking for an MRI of the spine, as you mentioned earlier. But again, I'm not a doc. Good luck
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure of my diagnosis - what should I do next?
Hi,
Sounds like a good discussion in here. I am in Canada, so it's a bit different on how you get in to see specialists or who orders what test. For me, the Freelite test is alternated with M-spike, and I do the 24-hour urine once or twice a year. M-spike is what is most telling for me – it goes up before the free light chains, but I had a very high M-spike when I was diagnosed, so my myeloma must just be heavy-chain dominant.
I don't know, you've had many of the typical myeloma tests and nothing is showing up? Maybe the whole spine MRI is a good place to go next?
Sounds like a good discussion in here. I am in Canada, so it's a bit different on how you get in to see specialists or who orders what test. For me, the Freelite test is alternated with M-spike, and I do the 24-hour urine once or twice a year. M-spike is what is most telling for me – it goes up before the free light chains, but I had a very high M-spike when I was diagnosed, so my myeloma must just be heavy-chain dominant.
I don't know, you've had many of the typical myeloma tests and nothing is showing up? Maybe the whole spine MRI is a good place to go next?
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Not sure of my diagnosis - what should I do next?
Multibilly,
I just want to give you a quick thanks for your post earlier in this thread describing the different tests and how they are used. Your post here is the best concise summary of these tests that I've seen. Although I've had multiple myeloma for awhile and have tried to educate myself, I still sometimes get confused about all these different tests. I'm going to copy your post and save it for quick reference in the future.
Thanks!
Mike
I just want to give you a quick thanks for your post earlier in this thread describing the different tests and how they are used. Your post here is the best concise summary of these tests that I've seen. Although I've had multiple myeloma for awhile and have tried to educate myself, I still sometimes get confused about all these different tests. I'm going to copy your post and save it for quick reference in the future.
Thanks!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Not sure of my diagnosis - what should I do next?
Thanks again Multibilly,
Just want to confirm that MikeB's sentiment is shared by many of us, like myself. Your posts have been immensely useful to me.
K_Shash
Just want to confirm that MikeB's sentiment is shared by many of us, like myself. Your posts have been immensely useful to me.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Not sure of my diagnosis - what should I do next?
You could have nonsecretory multiple myeloma and have normal SPEP, UPEP, and light chains, and no kidney trouble. A small percentage of all multiple myeloma patients do. Search the forums for keyword "nonsecretory".
One of the stories is mine; see "Nonsecretory multiple myeloma & other novel things" (started July 17, 2014).
I definitely had multiple myeloma with bad bone lesions, a fracture, a plasmacytoma, and I was going downhill fast, but no M-spike or other warning other than pain.
One of the stories is mine; see "Nonsecretory multiple myeloma & other novel things" (started July 17, 2014).
I definitely had multiple myeloma with bad bone lesions, a fracture, a plasmacytoma, and I was going downhill fast, but no M-spike or other warning other than pain.
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Not sure of my diagnosis - what should I do next?
Hi All,
I called up my doctor last night and told him I couldn't wait 2 more weeks for more tests and keep going down this dragged out path to some sort of diagnosis. I told him that I did my research and that, even though a SPEP is a great place to start for a multiple myeloma diagnosis, it only finds multiple myeloma in 75-80% of people who actually have the disease. I asked for a follow up SPEP immunofixation and, more importantly, asked for the serum free light chain test too. I just came back from having the blood taken, so we will see what the follow up tests come back with.
Mister Dana,
With the advent of the free light chain test, has there been an actual % of people that meet the "non secreting" criteria? I know there were people thought to be non secreting but heard that 2/3 of those people can have their multiple myeloma detected by the free light test. I really hope I am not non secreting because I know it can be a pain in the butt.
My X rays from 45 days ago didn't show any lesions in my lower spine / tailbone area where I first had felt some pain. If the free light test comes back negative for multiple myeloma, then I am going to have to ask for a bunch of MRI's or PET/CT scans to see what's going on (maybe the X rays aren't sensitive enough).
Are MRIs just as good at PET CTs?
Jason
I called up my doctor last night and told him I couldn't wait 2 more weeks for more tests and keep going down this dragged out path to some sort of diagnosis. I told him that I did my research and that, even though a SPEP is a great place to start for a multiple myeloma diagnosis, it only finds multiple myeloma in 75-80% of people who actually have the disease. I asked for a follow up SPEP immunofixation and, more importantly, asked for the serum free light chain test too. I just came back from having the blood taken, so we will see what the follow up tests come back with.
Mister Dana,
With the advent of the free light chain test, has there been an actual % of people that meet the "non secreting" criteria? I know there were people thought to be non secreting but heard that 2/3 of those people can have their multiple myeloma detected by the free light test. I really hope I am not non secreting because I know it can be a pain in the butt.
My X rays from 45 days ago didn't show any lesions in my lower spine / tailbone area where I first had felt some pain. If the free light test comes back negative for multiple myeloma, then I am going to have to ask for a bunch of MRI's or PET/CT scans to see what's going on (maybe the X rays aren't sensitive enough).
Are MRIs just as good at PET CTs?
Jason
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
There is a really good article on various imaging technologies and multiple myeloma called 'To PET or not to PET." It is by Dr. Prashant Kapoor and was posted to Beacon Forum on Thu Jul 24, 2014 at 4:48 pm.
It is well worth your time in helping to make decisions about imaging types and frequency.
Wesley
It is well worth your time in helping to make decisions about imaging types and frequency.
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Not sure of my diagnosis - what should I do next?
Your situation very closely resembles that of my wife. Have you found out the result of your test yet?
Re: Not sure of my diagnosis - what should I do next?
Jason
In my case, there may be some free light chains, but the level has always been low and uninformative. But the PET was another story. They scanned from my neck to my feet. The hot spots where cancer took up the tracer were clearly visible, and included already discovered lesions, spots on my ribs that I could feel, and places on other bones that I had never felt. It is shocking to see your body lit up like a Christmas tree, but the oncologist who showed me said "chemo can get to all those places", and it did.
Dana
In my case, there may be some free light chains, but the level has always been low and uninformative. But the PET was another story. They scanned from my neck to my feet. The hot spots where cancer took up the tracer were clearly visible, and included already discovered lesions, spots on my ribs that I could feel, and places on other bones that I had never felt. It is shocking to see your body lit up like a Christmas tree, but the oncologist who showed me said "chemo can get to all those places", and it did.
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Not sure of my diagnosis - what should I do next?
Partial results back. I am starting to hate the lab at my hospital. Blood taken last Friday. Doc ordered SPEP with IFE and serum free light chain test.
SPEP was done and came back normal. Was normal a month ago too.
IFE was never done, as they said they didn't see the IFE part of the test on the order form. Not sure when that's getting done.
Free light chain test was done today per the lab. Will get those results from the doc tomorrow.
This whole process is taking forever. In addition to my other bone pains in my legs and back, I started getting shooting, off-and-on pains in both my forearms and abdominal pain in lower right side is worse. Yesterday I started limping because my left thigh was hurting. Looked at my leg and realized I have a lump under the skin and weird red marks on the skin, one inch by one inch (2.5 cm x 2.5 cm) section, so not sure if I have an infection or something.
My whole body just feels bad all over and getting worse every day. My next doc appointment is Wednesday next week.
SPEP was done and came back normal. Was normal a month ago too.
IFE was never done, as they said they didn't see the IFE part of the test on the order form. Not sure when that's getting done.
Free light chain test was done today per the lab. Will get those results from the doc tomorrow.
This whole process is taking forever. In addition to my other bone pains in my legs and back, I started getting shooting, off-and-on pains in both my forearms and abdominal pain in lower right side is worse. Yesterday I started limping because my left thigh was hurting. Looked at my leg and realized I have a lump under the skin and weird red marks on the skin, one inch by one inch (2.5 cm x 2.5 cm) section, so not sure if I have an infection or something.
My whole body just feels bad all over and getting worse every day. My next doc appointment is Wednesday next week.
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jashem1980
38 posts
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