Hi everyone,
My mother was recently diagnosed with SMM (smoldering multiple myeloma, or asymptomatic multiple myeloma). We went to several specialists and they all had same opinion. But after much research we find that some of her test results don't match up perfectly with SMM, there's suspicion for multiple myeloma too as well as some that don't fit with either disease... Here are results:
-20% plasma in bone marrow (** I know this is one of the diagnosis criteria for SMM)
-Inverted ratio of kappa/lamda light chain in bone marrow and urine (**not sure what this means, but it's NOT that big... and not found in blood)
-High protein in urine!!! And kidney amyloidosis?? (** Isn't this indicative of multiple myeloma?)
-hypercholetrolemia (** this is quite weird, because it's only prevalent in 0.004% of multiple myeloma patients)
-NO M-PROTEIN DETECTED (** but isn't M-protein level a criteria for SMM/multiple myeloma?)
-levels of IgG, IgM and IgA in the blood were NORMAL
symptoms:
-My mom feels cold and fatigued (**which is not specific for multiple myeloma)
My mom is Asian, only 47 this year... and I read that SMM/multiple myeloma occurs in only 1 out of 100,000 and only 19% of women multiple myeloma patients are under the age of 50.
You can probably understand why my family and I are concerned about possibility of a wrong diagnosis (if it's really multiple myeloma, then my mom should start treatment ASAP, and of course we are hoping it's not SMM OR multiple myeloma)..
.. or are we just in denial?
If anyone out there has any insights into what my mom's test results mean, that'd be greatly appreciated!!!
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Re: SMM or multiple myeloma diagnosis?
If amyloidosis has been identified on a kidney biopsy, then treatment should be initiated. An elevated level of albumin in the urine would be the initial sign of kidney involvement with amyloid. It is important to consider the possiblity of amyloid in patients with smoldering myeloma but a biopsy of the affected organ is often necessary to prove this.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: SMM or multiple myeloma diagnosis?
Don't spend too much time trying to beat the statistics (ie. she's a women, Asian, under 50 so it must not be multiple myeloma)
Unfortunately there are always anomalies in any statistical evaluation, and for people including myself, and your mother, we are the anomalies! It's hard to wrap your head around the why me? why her? why us? I still have dark days where I feel very depressed that my life plan is not going to work out how I thought it would (career, family etc) Every cancer patient (and their family) feels this sense of loss I think. We even grieve it, that life that we had envisioned for ourselves.
Somehow our mind is able to switch into the survival mode and as we learn more about our particular Myeloma we are better able to deal with it. We still miss that old life, but can envision a new life, maybe different, but still able to live a good life. ( I guess what they call the new normal)
If it helps to know your mother is not alone in being the anomalies, I am a women, I am Canadian, grew up in suburbs, never worked or was exposed to any chemicals etc. but Myeloma happened to me too. I was 32 years old when i was diagnosed.
Unfortunately there are always anomalies in any statistical evaluation, and for people including myself, and your mother, we are the anomalies! It's hard to wrap your head around the why me? why her? why us? I still have dark days where I feel very depressed that my life plan is not going to work out how I thought it would (career, family etc) Every cancer patient (and their family) feels this sense of loss I think. We even grieve it, that life that we had envisioned for ourselves.
Somehow our mind is able to switch into the survival mode and as we learn more about our particular Myeloma we are better able to deal with it. We still miss that old life, but can envision a new life, maybe different, but still able to live a good life. ( I guess what they call the new normal)
If it helps to know your mother is not alone in being the anomalies, I am a women, I am Canadian, grew up in suburbs, never worked or was exposed to any chemicals etc. but Myeloma happened to me too. I was 32 years old when i was diagnosed.
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Anonymous
Re: SMM or multiple myeloma diagnosis?
Thank you Dr. Valent. Yes my mom is getting treatment starting this weekend. She's been dealing very well with this and is just getting a lot of rest these days. Her friends recommend she just keep positive attitude and stay relaxed.
To the lady from above, thank you for your advice and you are very right. If I may ask, how many years has it been since your diagnosis? How are you doing right now? Is treatment helping or have your symptoms worsened?
Have a great Thanksgiving, by the way... Enjoy your turkeys and God bless.
-D
To the lady from above, thank you for your advice and you are very right. If I may ask, how many years has it been since your diagnosis? How are you doing right now? Is treatment helping or have your symptoms worsened?
Have a great Thanksgiving, by the way... Enjoy your turkeys and God bless.
-D
Re: SMM or multiple myeloma diagnosis?
Hi that was my post above.
I was diagnosed in winter 2010 with active multiple myeloma stage II. I was diagnosed in the ER because I was fainting at work and went to the hospital. I was very anemic and I had a very high M- Protein (100 g/l) when they ran my blood work (which led to the suspician of multiple myeloma by the ER Dr.) the bone marrow biopsy had 49% plasma cells. I started chemo within the week I was diagnosed. They started me on high dose steroids before the bone marrow biopsy because they were pretty sure of the diagnosis and the bmb was just to confirm.
I did chemo for a few months and then I had a stem cell transplant in Summer 2010, and have been in remission since a few months after that. So far I am doing well! It was a long recovery from the transplant, I think a key for me was to get active and start going to the gym and building my body back up. For the most part I feel better now, then I did before my diagnosis, since my specialist confirms I had multiple myeloma for at least two years before getting diagnosed.
The treatment can be rough, escpecially the chemo for the stem cell transplant, but I have to say it gave me my life back. I am now 35 and feel pretty good. I have some ongoing issues, such as catching every bug that goes around the office, but I am back at work full time and living my life again.
I was diagnosed in winter 2010 with active multiple myeloma stage II. I was diagnosed in the ER because I was fainting at work and went to the hospital. I was very anemic and I had a very high M- Protein (100 g/l) when they ran my blood work (which led to the suspician of multiple myeloma by the ER Dr.) the bone marrow biopsy had 49% plasma cells. I started chemo within the week I was diagnosed. They started me on high dose steroids before the bone marrow biopsy because they were pretty sure of the diagnosis and the bmb was just to confirm.
I did chemo for a few months and then I had a stem cell transplant in Summer 2010, and have been in remission since a few months after that. So far I am doing well! It was a long recovery from the transplant, I think a key for me was to get active and start going to the gym and building my body back up. For the most part I feel better now, then I did before my diagnosis, since my specialist confirms I had multiple myeloma for at least two years before getting diagnosed.
The treatment can be rough, escpecially the chemo for the stem cell transplant, but I have to say it gave me my life back. I am now 35 and feel pretty good. I have some ongoing issues, such as catching every bug that goes around the office, but I am back at work full time and living my life again.
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LYS2012
Re: SMM or multiple myeloma diagnosis?
That's great for you, thanks! Hearing your story really helps
6 posts
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