I don't really know what I can ask everybody that I haven't already seen asked/answered in other posts ... I just need an outlet, I guess.
I feel so frustrated. I'm 37 years old and I've been undergoing tests for Parkinson's disease (PD). I finally got the confirmation for that diagnosis yesterday, but the movement disorder specialist (neurologist who specializes in things like PD) seemed less concerned with that than with the fact that I had an abnormal reading on the serum protein electrophoresis (SPEP). She referred me to a hematologist/oncologist, and specifically mentioned "multiple myeloma," which is why I'm here, of course.
But she also said something about my other labs being normal, and the elevated protein maybe being a false positive. But I feel like she has to have some legitimate concern or she wouldn't be referring me to the hem/onc, right? Wouldn't she just re-run the tests if she thought there were some chance it were a false positive?
She's an amazing doctor with an amazing reputation. She runs the Movement Disorder Clinic in the major metro area. She has to know what she's doing... And would she have mentioned multiple myeloma if that weren't a concern? I wish I'd have thought to ask her for a copy of the records, but we were talking on the phone- and she was calling me from home, on her day off... which, of course, has me even more freaked out.
And now I'm spending the whole weekend just waiting to hear from this hem/onc office about scheduling an appointment. I should be spending time with my husband and two small kids... instead, I'm obsessing about THIS.
SO. FRUSTRATED.
Anyway. Thanks for reading. And thank you for all of the information I've found reading here ... it's been helpful.
Forums
Re: Referred to hematologist / oncologist
What type of issues did you have for a family doctor to send you to a neurologist in the first place?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Referred to hematologist / oncologist
I've had essential tremor since I was in my early 20s, so action tremors, not resting tremors. But I started getting super stiff, slowing down: used to be a mall walker, now my husband's like, "catch up, Granny." I have a lot of peripheral numbness / tingling, cramps, aches, etc. Blurry vision, REM sleep behavior disorder ... all things that point to Parkinson's.
This blood test thing just came out of nowhere.
This blood test thing just came out of nowhere.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Hi Ginny,
Sorry to hear you are caught in the angst of waiting for the appointment with the hematologist. That always is a tough time for any patient.
Everyone with multiple myeloma first started off with a condition called MGUS (whether they knew they knew they had MGUS or not at that time). In fact, there are a LOT of folks on the planet that have MGUS and have no clue that they have this condition. For the vast majority of people, MGUS is a completely benign state that is not technically cancer and one can go through life without ever being any the worse for it. The chances of MGUS developing into multiple myeloma is only about 1%/year.
Do you have your SPEP lab test results? If this was the sole test that caused your doc to send you to a hematologist, it was undoubtedly the presence of what is known as an M-spike (a.k.a. monoclonal protein, paraprotein, M-protein, abnormal protein band, etc) that raised a flag. Knowing the value of the M-spike will sometimes give you an idea of what specifically you are dealing with, including MGUS. Oftentimes, if a doc runs an SPEP, they also run what is known as a serum immunofixtion test. That can also provide another clue and help confirm if the SPEP reading is valid or not.
If the M-spike from the SPEP test is quite small, it also could just be a transient reading that may simply disappear the next time you get tested. To figure out what's going on, your hematologist will very likely run some other tests such as a serum immunofixation, quantified immunoglobulins, free light chain assay and maybe another SPEP to determine if you have MGUS or if something else is going on.
You probably also had a CBC and comprehensive metabolic panel done if you had an SPEP done. In the meantime, it might be insightful if you looked at your hemoglobin, calcium and creatinine levels on those test results. If any of those values are significantly off, that "might" give you a clue if you are dealing with MGUS or something else.
If you don't have copies of your most recent lab tests, you can always request a copy from your doc's office.
I know it's hard not to think about this situation, but try not to worry too much in the meantime and enjoy your life.
Sorry to hear you are caught in the angst of waiting for the appointment with the hematologist. That always is a tough time for any patient.
Everyone with multiple myeloma first started off with a condition called MGUS (whether they knew they knew they had MGUS or not at that time). In fact, there are a LOT of folks on the planet that have MGUS and have no clue that they have this condition. For the vast majority of people, MGUS is a completely benign state that is not technically cancer and one can go through life without ever being any the worse for it. The chances of MGUS developing into multiple myeloma is only about 1%/year.
Do you have your SPEP lab test results? If this was the sole test that caused your doc to send you to a hematologist, it was undoubtedly the presence of what is known as an M-spike (a.k.a. monoclonal protein, paraprotein, M-protein, abnormal protein band, etc) that raised a flag. Knowing the value of the M-spike will sometimes give you an idea of what specifically you are dealing with, including MGUS. Oftentimes, if a doc runs an SPEP, they also run what is known as a serum immunofixtion test. That can also provide another clue and help confirm if the SPEP reading is valid or not.
If the M-spike from the SPEP test is quite small, it also could just be a transient reading that may simply disappear the next time you get tested. To figure out what's going on, your hematologist will very likely run some other tests such as a serum immunofixation, quantified immunoglobulins, free light chain assay and maybe another SPEP to determine if you have MGUS or if something else is going on.
You probably also had a CBC and comprehensive metabolic panel done if you had an SPEP done. In the meantime, it might be insightful if you looked at your hemoglobin, calcium and creatinine levels on those test results. If any of those values are significantly off, that "might" give you a clue if you are dealing with MGUS or something else.
If you don't have copies of your most recent lab tests, you can always request a copy from your doc's office.
I know it's hard not to think about this situation, but try not to worry too much in the meantime and enjoy your life.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Referred to hematologist / oncologist
Hey Multibilly,
Thanks for the reply. It's helpful. I don't have the lab results, but I assure you I'll be asking for them first thing tomorrow morning. At 8AM sharp.
I do have a copy of the lab work-up request though, and I don't see calcium or creatine marked off. Only:
ANA (anti-nuclear abs)
CRP (c-reactive protein)
Ferritin
Iron and IBC
RF rheumatoid factor
RPR w/ reflex Tilter
Sedimentation Rate (ESR)
TSH w/ reflex to free T4
Vitamin B12
And then at the bottom they wrote in:
24 hour heavy metals copper
SPEP
Copper
Ceruloplasmin
B6
B1
And that's it. I can't imagine they didn't do the CBC, but it's not checked off on this sheet. I'll have to wait until tomorrow to find out.
I did read some about MGUS, so I'm trying not to jump to any conclusions. Just HATE HATE HATE this waiting game. I was fine on Friday, and even yesterday as my kids finished their last soccer games of the season. But now I'm just watching the hands on the clock creep by. And it's not like I can commiserate with my girlfriends about an issue like this, because I don't want to worry anybody. And I don't want to commiserate with my husband about it because his own dad was diagnosed with lymphoma when he was 12- so it screwed him up and he's very sensitive about cancer.
So anyway, again... thanks for the ear.
Thanks for the reply. It's helpful. I don't have the lab results, but I assure you I'll be asking for them first thing tomorrow morning. At 8AM sharp.
I do have a copy of the lab work-up request though, and I don't see calcium or creatine marked off. Only:
ANA (anti-nuclear abs)
CRP (c-reactive protein)
Ferritin
Iron and IBC
RF rheumatoid factor
RPR w/ reflex Tilter
Sedimentation Rate (ESR)
TSH w/ reflex to free T4
Vitamin B12
And then at the bottom they wrote in:
24 hour heavy metals copper
SPEP
Copper
Ceruloplasmin
B6
B1
And that's it. I can't imagine they didn't do the CBC, but it's not checked off on this sheet. I'll have to wait until tomorrow to find out.
I did read some about MGUS, so I'm trying not to jump to any conclusions. Just HATE HATE HATE this waiting game. I was fine on Friday, and even yesterday as my kids finished their last soccer games of the season. But now I'm just watching the hands on the clock creep by. And it's not like I can commiserate with my girlfriends about an issue like this, because I don't want to worry anybody. And I don't want to commiserate with my husband about it because his own dad was diagnosed with lymphoma when he was 12- so it screwed him up and he's very sensitive about cancer.
So anyway, again... thanks for the ear.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Hello Ginny
I am sorry you have obviously been dealing with a lot of health issues and throwing on something new is scary I am sure. I can only really try to reassure you, you are not alone, we have all been there. There are lots of people on the Myeloma Beacon who are a wealth of practical experience. Multibilly is excellent at breaking down things to a level you can understand, as are several other regulars to this site.
You are doing what a lot of us have done, including myself, you started researching right away when you got the news to see the hematologist. It was very frustrating to only get hints of a problem and the wait to hear back from the hematologist, the wait for the appointment, the wait for results from the first tests.... Lots of waiting happens and my mind raced with the possibilities. A lot of us were diagnosed because we were being seen for other reasons and the blood work turned up the M spike.
I would recommend to not worry so much and spend time with your family as you normally would but I also know that can be a tall order when faced with this. I did not do so well with my own advice, "do as I say and not as I do" would fit.
Best wishes
Kim
.
I am sorry you have obviously been dealing with a lot of health issues and throwing on something new is scary I am sure. I can only really try to reassure you, you are not alone, we have all been there. There are lots of people on the Myeloma Beacon who are a wealth of practical experience. Multibilly is excellent at breaking down things to a level you can understand, as are several other regulars to this site.
You are doing what a lot of us have done, including myself, you started researching right away when you got the news to see the hematologist. It was very frustrating to only get hints of a problem and the wait to hear back from the hematologist, the wait for the appointment, the wait for results from the first tests.... Lots of waiting happens and my mind raced with the possibilities. A lot of us were diagnosed because we were being seen for other reasons and the blood work turned up the M spike.
I would recommend to not worry so much and spend time with your family as you normally would but I also know that can be a tall order when faced with this. I did not do so well with my own advice, "do as I say and not as I do" would fit.
Best wishes
Kim
.
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: Referred to hematologist / oncologist
Thanks so much, Kim. I've done alright today- took the kids for a walk, made eggs benedict. Just need to make it through the night and I might survive without killing anybody!
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Just wanted to share, my doctor sent me the lab results and my M-spike is 1.3 g/dL. All other readings were normal.
I've got my appointment with the hem/onc next week, and we'll go from there.
Thanks again for the ear, everyone.
I've got my appointment with the hem/onc next week, and we'll go from there.
Thanks again for the ear, everyone.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Hello GinnyD:
Sorry to hear about your troubles. At an M-spike of 1.3 g/dL, very, very rarely that could become active multiple myeloma. More likely, you will be falling into the MGUS watch and wait game, which could go on for many, many years, and hopefully it does. You will need to have it looked at two to four times a year.
Multiple myeloma is very variable, but in many cases, it turns to smoldering multiple myeloma or active something above an M-spike of 3 (differing wildly in individual cases). So the good news is that it will hopefully be a good many years until it is a real issue.
The other good news is that in the last about 3 years, the number of studies to address this at the smoldering multiple myeloma stage, before it turns active, has increased tremendously. So if you have active anxiety, first, it is not an immediate concern. Secondly, you can try to direct your anxiety towards learning and researching, potential "counter-measures". In fact, I read in one of the releases yesterday that the new drug approved, daratumumab (Darzalex), has an active study going on for the smoldering multiple myeloma setting. You are very likely not yet smoldering, but by the time you might need it, daratumumab might be used in that setting, to slow down further the advance from MGUS to smoldering multiple myeloma to active multiple myeloma.
I know you have a lot in your plate, but I am sure that you will have the strength the handle and manage it. God Bless you as you are dealing with your difficulties.
Sorry to hear about your troubles. At an M-spike of 1.3 g/dL, very, very rarely that could become active multiple myeloma. More likely, you will be falling into the MGUS watch and wait game, which could go on for many, many years, and hopefully it does. You will need to have it looked at two to four times a year.
Multiple myeloma is very variable, but in many cases, it turns to smoldering multiple myeloma or active something above an M-spike of 3 (differing wildly in individual cases). So the good news is that it will hopefully be a good many years until it is a real issue.
The other good news is that in the last about 3 years, the number of studies to address this at the smoldering multiple myeloma stage, before it turns active, has increased tremendously. So if you have active anxiety, first, it is not an immediate concern. Secondly, you can try to direct your anxiety towards learning and researching, potential "counter-measures". In fact, I read in one of the releases yesterday that the new drug approved, daratumumab (Darzalex), has an active study going on for the smoldering multiple myeloma setting. You are very likely not yet smoldering, but by the time you might need it, daratumumab might be used in that setting, to slow down further the advance from MGUS to smoldering multiple myeloma to active multiple myeloma.
I know you have a lot in your plate, but I am sure that you will have the strength the handle and manage it. God Bless you as you are dealing with your difficulties.
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JPC - Name: JPC
Re: Referred to hematologist / oncologist
My doctor found an M-spike and sent me to a hematologist/oncologist. They ordered more tests. Those tests came in today and I can't make heads or tails of any of it. Please help.
My CBC all seems to fall within normal ranges.
On the Comprehensive, my calcium is actually a tad low, and my chloride a tad high, but everything else is normal.
Now on the "other" test results, this is where I get confused.
A/G Ratio: .9%
ALT/SGPT: 15 u/l
LDH: 128 u/l
IgG: 1308 mg/dl
IgM: 103 mg/dl
IgA: 270 mg/dl
Globulin: 4 g/dl
K/L light chain ratio: 2.47
Kappa light chain: 3.137 mg/dl
Lambda light chain: 1.267 mg/dl
BUN/Creatine: 21.7
Bilirubin: .3 mg/dl
Beta 2 microglobulin: 1.8 mg/L
AST/SGOT <10
So what does this mean? Just MGUS, right? Nothing to worry about?
My CBC all seems to fall within normal ranges.
On the Comprehensive, my calcium is actually a tad low, and my chloride a tad high, but everything else is normal.
Now on the "other" test results, this is where I get confused.
A/G Ratio: .9%
ALT/SGPT: 15 u/l
LDH: 128 u/l
IgG: 1308 mg/dl
IgM: 103 mg/dl
IgA: 270 mg/dl
Globulin: 4 g/dl
K/L light chain ratio: 2.47
Kappa light chain: 3.137 mg/dl
Lambda light chain: 1.267 mg/dl
BUN/Creatine: 21.7
Bilirubin: .3 mg/dl
Beta 2 microglobulin: 1.8 mg/L
AST/SGOT <10
So what does this mean? Just MGUS, right? Nothing to worry about?
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
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