I THINK I've been diagnosed with multiple myeloma. What stage it's in?
I haven't a clue. MGUS, 'smoldering,' whatever....nobody's TALKING to me. I guess that's a good thing, because if I were truly ill, judging from the stories I've been reading, 'they' would be all over me like white on rice.
I think.
ANYway, I HAVE been told that whatever it is I have, I've 'had it for several years now." OK...here's the question: For those same 'several years,' after knee replacement surgery, I've been having knee and hip pain. The surgery helped the arthritis "bone on bone' thing, and that was wonderful, but I've been dealing with pain in both knees (I just figured that this came with the situation...) and pain in the hip (I keep getting told it's bursitis, but cortisone shots don't help...)
I don't go anywhere because I'm afraid of getting 'stuck' in the back of the store or half way around the block, hurting too much to turn around and come home.
On the other hand...thank the cosmos...I'm not having back pain or rib pain. So...could multiple myeloma be causing the knee and hip problems, or am I over thinking things?
I live in fear of being seen as a hypochondriac--but right now I'm afraid that I have the patience of a two year old. I want to KNOW, darn it!
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4 posts
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Multiple myeloma and knee & hip pain
Hi There Dianaiad,
I know this time as you wait to be diagnosed can be nerve racking and very scary.
In a nut, you need to get your M-Spike (paraprotein) number from your blood tests to see how how pervasive the myeloma might be. But, this alone won't tell you the whole picture. If your initial blood tests suggest any stage of multiple myeloma, you also really need to get a bone marrow biopsy, a skeletal xray survey and some of the other tests like chromosome/FISH tests I outlined earlier (see earlier post below) to determine just how pervasive the disease is, what stage you are at and what your prognosis is.
If you have one or more of the CRAB criteria (hypercalcemia, renal issues, anemia, bone lesions), you are neither MGUS or smoldering, and you are symptomatic and need to explore treatment options.If you are having bone pain, this might be due to the multiple myeloma, but it also may not be. Only an X-ray and subsequent PET/CT scans can really tell you for sure. It sounded like you were suffering from anemia in your earlier post, so you may very well be symptomatic multiple myeloma based on that alone. If you are symptomatic, the above tests will help you determine which stage you are and the chromosome/FISH studies will help determine your prognosis and likely drug treatments.
If your doctor isn't sharing the details of your tests with you in a timely manner (some of these tests can take a few days to get results for), find another doctor. And as I said before, make sure you get copies of all your reports, locate a multiple myeloma specialist that lives and breathes this disease and don't be afraid to get a second opinion.
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You don't share a lot regarding the type and results of your blood tests, just the fact that you have some anemia going on.
1. Are you seeing a specialist that handles many cases of multiple myeloma each year? I can't emphasize this enough. Multiple Myeloma is a challenging disease and you need to be working with someone that lives and breathes this disease on a daily basis.
2. To really determine if you have multiple myeloma, just what stage you are at, whether you have any other issues going on related to multiple myeloma, and what treatment options might be open to you, you should be getting the following tests done that Dr. Shain outlines in this thread:
https://myelomabeacon.org/forum/what-are-the-chances-of-me-having-multiple-myeloma-t1666.html
Best of luck to you and don't despair. If you do have multiple myeloma, there are many treatment options open to you and you can live a long life with a good degree of quality.
Also, a lot of folks on this site can help with answering your questions as you sort through all this.
Multibilly
I know this time as you wait to be diagnosed can be nerve racking and very scary.
In a nut, you need to get your M-Spike (paraprotein) number from your blood tests to see how how pervasive the myeloma might be. But, this alone won't tell you the whole picture. If your initial blood tests suggest any stage of multiple myeloma, you also really need to get a bone marrow biopsy, a skeletal xray survey and some of the other tests like chromosome/FISH tests I outlined earlier (see earlier post below) to determine just how pervasive the disease is, what stage you are at and what your prognosis is.
If you have one or more of the CRAB criteria (hypercalcemia, renal issues, anemia, bone lesions), you are neither MGUS or smoldering, and you are symptomatic and need to explore treatment options.If you are having bone pain, this might be due to the multiple myeloma, but it also may not be. Only an X-ray and subsequent PET/CT scans can really tell you for sure. It sounded like you were suffering from anemia in your earlier post, so you may very well be symptomatic multiple myeloma based on that alone. If you are symptomatic, the above tests will help you determine which stage you are and the chromosome/FISH studies will help determine your prognosis and likely drug treatments.
If your doctor isn't sharing the details of your tests with you in a timely manner (some of these tests can take a few days to get results for), find another doctor. And as I said before, make sure you get copies of all your reports, locate a multiple myeloma specialist that lives and breathes this disease and don't be afraid to get a second opinion.
-----------------------------------
You don't share a lot regarding the type and results of your blood tests, just the fact that you have some anemia going on.
1. Are you seeing a specialist that handles many cases of multiple myeloma each year? I can't emphasize this enough. Multiple Myeloma is a challenging disease and you need to be working with someone that lives and breathes this disease on a daily basis.
2. To really determine if you have multiple myeloma, just what stage you are at, whether you have any other issues going on related to multiple myeloma, and what treatment options might be open to you, you should be getting the following tests done that Dr. Shain outlines in this thread:
https://myelomabeacon.org/forum/what-are-the-chances-of-me-having-multiple-myeloma-t1666.html
Best of luck to you and don't despair. If you do have multiple myeloma, there are many treatment options open to you and you can live a long life with a good degree of quality.
Also, a lot of folks on this site can help with answering your questions as you sort through all this.
Multibilly
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma and knee & hip pain
It is difficult to know what to post, being this early in the process, but here are some of the blood tests that seemed a bit 'wonky.'
I'm barely anemic:.
HGB - 10.6
HCT,AUTO + 31.2 %
And nowhere near as anemic as I used to get in my 'child bearing years.' Until, that is, the doctor sent me over to hematology and he laid this on me!
Let's see, albumin is 3.4,
Beta 2 microglobulin is 4.0
Calcium is 9.0 (That's normal, right?)
and the Quantitative immunoglobulin assay was 43000+ (I forget the exact number).
The reticulocytes 2.0
The 'serum protein electrophoresis' exam, well, I don't know exactly what that one is because Kaiser didn't post it on the website (as they didn't post the quantitative immunoglobulin assay), but the oncology nurse, who refused to give me the numbers over the phone, said that it was 'slightly elevated.' I imagine that this means I have a bit of an M-spike, but I don't know. I have a request in for the doctor to call me. He hasn't yet.
I had a whole bunch of x-rays taken last Tuesday. I hope that the doctor will talk to me about them, as well, but I'm not holding my breath.
I'm barely anemic:.
HGB - 10.6
HCT,AUTO + 31.2 %
And nowhere near as anemic as I used to get in my 'child bearing years.' Until, that is, the doctor sent me over to hematology and he laid this on me!
Let's see, albumin is 3.4,
Beta 2 microglobulin is 4.0
Calcium is 9.0 (That's normal, right?)
and the Quantitative immunoglobulin assay was 43000+ (I forget the exact number).
The reticulocytes 2.0
The 'serum protein electrophoresis' exam, well, I don't know exactly what that one is because Kaiser didn't post it on the website (as they didn't post the quantitative immunoglobulin assay), but the oncology nurse, who refused to give me the numbers over the phone, said that it was 'slightly elevated.' I imagine that this means I have a bit of an M-spike, but I don't know. I have a request in for the doctor to call me. He hasn't yet.
I had a whole bunch of x-rays taken last Tuesday. I hope that the doctor will talk to me about them, as well, but I'm not holding my breath.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Multiple myeloma and knee & hip pain
Well, both your both HGB and HCT are below the normal range.
You calcium is normal. And so is your Beta2 Microgloublin (but depends on what the acceptable range is for the specific test and equipment is).
You really need the results of the SEP test and the xray radiology report to get some of the key parameters such as the M-spike, whether you have suspected bone lesions, etc. Try looking for a lab called or "SEP" or "serum protein fractionalization" etc. They might be there. M-spikes (aka paraprotetin or monoclonal levels, or SPEP monclonoal protein, etc) are sometimes called out as a separate annotation in the lab reports and may not be listed like the other data entries you find in various lab reports. They are usually listed on my lab reports that include the total protein figures, Alpha-1 globulin figures, etc. The M-spike may read something like this on the report: "Discrete band in the beta region, 1.74 g/dL" or "monoclonal paraprotein 1.63 g/dL" or "SPEP monclonal protein 1.6 g/dL").
You will also get another set of test results that talk about free light chains. See earlier suggestions on how to read and interpret those.
The Xrays themselves will only give you an idea of whether you may have bone lesions or not associated with multiple myeloma. You then need to confirm those with a PET/CT scan or a biopsy of a bone lesion (if present). If you have bone lesions, your doc will likely order the subsequent tests once he sees the radiology report
You sound pretty frustrated with your doctor and his lack of communication. If I were I were in your shoes, I would simply call the medical records department and ask them to fax or mail (or email?) you a copy of your SEP report and radiological report. Not sure what your hospital's policy is on giving those to you (some say you must first be debriefed by your doctor, others will just send them right over...be assertive and just say "you want copies of the reports today"). I would then look at the link for the other facilities I sent you earlier and find another doc. You don't want to go through this without having a clear and open channel to a communicative and supportive doctor and staff that specializes in multiple myeloma.
You calcium is normal. And so is your Beta2 Microgloublin (but depends on what the acceptable range is for the specific test and equipment is).
You really need the results of the SEP test and the xray radiology report to get some of the key parameters such as the M-spike, whether you have suspected bone lesions, etc. Try looking for a lab called or "SEP" or "serum protein fractionalization" etc. They might be there. M-spikes (aka paraprotetin or monoclonal levels, or SPEP monclonoal protein, etc) are sometimes called out as a separate annotation in the lab reports and may not be listed like the other data entries you find in various lab reports. They are usually listed on my lab reports that include the total protein figures, Alpha-1 globulin figures, etc. The M-spike may read something like this on the report: "Discrete band in the beta region, 1.74 g/dL" or "monoclonal paraprotein 1.63 g/dL" or "SPEP monclonal protein 1.6 g/dL").
You will also get another set of test results that talk about free light chains. See earlier suggestions on how to read and interpret those.
The Xrays themselves will only give you an idea of whether you may have bone lesions or not associated with multiple myeloma. You then need to confirm those with a PET/CT scan or a biopsy of a bone lesion (if present). If you have bone lesions, your doc will likely order the subsequent tests once he sees the radiology report
You sound pretty frustrated with your doctor and his lack of communication. If I were I were in your shoes, I would simply call the medical records department and ask them to fax or mail (or email?) you a copy of your SEP report and radiological report. Not sure what your hospital's policy is on giving those to you (some say you must first be debriefed by your doctor, others will just send them right over...be assertive and just say "you want copies of the reports today"). I would then look at the link for the other facilities I sent you earlier and find another doc. You don't want to go through this without having a clear and open channel to a communicative and supportive doctor and staff that specializes in multiple myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
4 posts
• Page 1 of 1