It started when she was rear ended in a very minor car accident the previous month, March 2016. She was complaining about the pain in her lower back. She knew something wasn't right. After several visits to her doctor, and then getting referred to other doctors, she got a smoldering multiple myeloma diagnosis in April 2016.
We feel very lucky that the accident occurred, and she found out. In the previous year she was having / complaining about lower back pain, and thought the chair she uses to watch TV might of been too soft and not giving her back enough support.
At 61, she's always been prone to catch whatever seems to be in the air. Colds, rashes, bacterial pneumonia two years ago. This year it seems to be diarrhea that she just can't seem to shake in the last few weeks. She's been tested for bacterial diarrhea, which was negative. So a call to her doctor again this Monday is in order.
I am somewhat a caregiver as she works and I am retired. Since her diagnosis, I've been trying to learn all I could about multiple myeloma. It's been tough for me to get my head around this disease, all it's facets, and especially being able to read / comprehend the blood results. This forum / website, while scary, has been very helpful to me in learning about multiple myeloma, and also being able to read the other stories has helped.
As for her, she's certainly aware what multiple myeloma is, but she's rather not dwell on it. She's remarkably emotionally strong, upbeat, and a happy person, all of which I know is very important. We are using a lot supplements that I've reviewed on PubMed, and if I had to, I'd say they are working somewhat as her numbers have turned down a bit. We changed our diet also. Good for me, but a must for her.
She's only had 4 blood tests. She's IgA kappa (if think). We're also lucky to be in San Diego where there's very good healthcare - the UCSD Moore Cancer Center.
We both know this will be a journey, and are very happy to have found this forum.
Forums
6 posts
• Page 1 of 1
-
Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
Re: My wife, diagnosed with smoldering multiple myeloma
Hi Mark,
Welcome to the forum, but sorry to hear that your wife has smoldering multiple myeloma..
Given she presented with lower back pain, has she had an MRI or her spine or a PET/CT scan? I'm just curious what is causing her lower back pain if her diagnosis is only smoldering multiple myeloma?
Welcome to the forum, but sorry to hear that your wife has smoldering multiple myeloma..
Given she presented with lower back pain, has she had an MRI or her spine or a PET/CT scan? I'm just curious what is causing her lower back pain if her diagnosis is only smoldering multiple myeloma?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My wife, diagnosed with smoldering multiple myeloma
Hi Multibilly,
Thank you for your reply.
She's had an MRI, and probably a PET/CT scan. I say "probably" because she didn't tell me anything about this for a couple of months after she was diagnosed. She said "I'm a worrier", and she's right, I am.
She's always had some back pain from time to time, for one reason or another. Old skiing injuries, even jumping into a shallow pool head first as a child. Her PCP said she has two vertebrae that look like their damaged from old injuries. Honestly, I'm thinking that back pain is somewhat typical for multiple myeloma. She also has pain in her hip and has somewhat limited her movement there. Other pains like in her shoulder, and neck seem to come and go.
Last year she got a stand up desk at work, and spends about half her day standing at her desk. It can be lowered also when you want to sit. Actually, these type desks are getting somewhat popular at her workplace, an IP law firm.
She's 5'11" (1.80 m), which I understand puts her at a minuscule higher risk for multiple myeloma, likes to walk a lot and do things in the garden, as she says it helps with back pain.
She's had a bone marrow biopsy showing her platelet count is 11%. I've listed her key blood test results below.
Test 2016 2016 2016 2017
Apr 27 Aug 25 Nov 30 Apr 19
IgA (70-400 mg/dl) 783 758 730 758
IgG (700-1600 mg/dl) 552 504 508 558
IgM (40-230 mg/dl) 41 43 45 43
Kappa Free Light 49.8 83.8 41.4 49.4
Chains quant
3.3-19.4 mg/l
Kappa:Lambda Free 5.86 10.22 4.81 5.26
Light Chain ratio
0.26-1.65
Lambda Free Light 8.5 8.2 8.6 9.4
Chains Quant
5.7-26.3mg/l
M-Spike (g/dL) 0.53 0.49 0.35 unde-
Gamma tected
Thank you for your reply.
She's had an MRI, and probably a PET/CT scan. I say "probably" because she didn't tell me anything about this for a couple of months after she was diagnosed. She said "I'm a worrier", and she's right, I am.
She's always had some back pain from time to time, for one reason or another. Old skiing injuries, even jumping into a shallow pool head first as a child. Her PCP said she has two vertebrae that look like their damaged from old injuries. Honestly, I'm thinking that back pain is somewhat typical for multiple myeloma. She also has pain in her hip and has somewhat limited her movement there. Other pains like in her shoulder, and neck seem to come and go.
Last year she got a stand up desk at work, and spends about half her day standing at her desk. It can be lowered also when you want to sit. Actually, these type desks are getting somewhat popular at her workplace, an IP law firm.
She's 5'11" (1.80 m), which I understand puts her at a minuscule higher risk for multiple myeloma, likes to walk a lot and do things in the garden, as she says it helps with back pain.
She's had a bone marrow biopsy showing her platelet count is 11%. I've listed her key blood test results below.
Test 2016 2016 2016 2017
Apr 27 Aug 25 Nov 30 Apr 19
IgA (70-400 mg/dl) 783 758 730 758
IgG (700-1600 mg/dl) 552 504 508 558
IgM (40-230 mg/dl) 41 43 45 43
Kappa Free Light 49.8 83.8 41.4 49.4
Chains quant
3.3-19.4 mg/l
Kappa:Lambda Free 5.86 10.22 4.81 5.26
Light Chain ratio
0.26-1.65
Lambda Free Light 8.5 8.2 8.6 9.4
Chains Quant
5.7-26.3mg/l
M-Spike (g/dL) 0.53 0.49 0.35 unde-
Gamma tected
-
Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
Re: My wife, diagnosed with smoldering multiple myeloma
Hi Mark T,
It sounds like you are a very concerned spouse, and your wife is fortunate in that! On the topic of bone pain and back aches, those can be a precursor of fractures, from bone thinning. Does she have a baseline of bone density mineralization (T-score)? This can be used for determining whether or not a patient has osteopenia, or osteoporosis, and what risk they are at for fractures. If one is at high risk, then usually the PCP would prescribe a bisphosphonate such as Fosamax (alendronic acid). An oncologist spotting 'lytic lesions' from a scan, which could also be a skeletal bone X-ray survey, might well prescribe stronger bisphosphonates, which are given by infusion, such as Zometa (zoledronic acid) or Aredia (pamidronate).
Women often get bones thinning with age, but in the case of myeloma, the problem is caused or exacerbated by cancer cells eating away at the bones! The presence of lytic lesions puts one into the category of multiple myeloma, not smoldering multiple myeloma.
So I think that you could ask for copies of the results of the MRI and PET scans, with her permission, and ask to have them interpreted for you by the radiologists, and also get them sent to the oncologists you are seeing.
Hope that helps!
It sounds like you are a very concerned spouse, and your wife is fortunate in that! On the topic of bone pain and back aches, those can be a precursor of fractures, from bone thinning. Does she have a baseline of bone density mineralization (T-score)? This can be used for determining whether or not a patient has osteopenia, or osteoporosis, and what risk they are at for fractures. If one is at high risk, then usually the PCP would prescribe a bisphosphonate such as Fosamax (alendronic acid). An oncologist spotting 'lytic lesions' from a scan, which could also be a skeletal bone X-ray survey, might well prescribe stronger bisphosphonates, which are given by infusion, such as Zometa (zoledronic acid) or Aredia (pamidronate).
Women often get bones thinning with age, but in the case of myeloma, the problem is caused or exacerbated by cancer cells eating away at the bones! The presence of lytic lesions puts one into the category of multiple myeloma, not smoldering multiple myeloma.
So I think that you could ask for copies of the results of the MRI and PET scans, with her permission, and ask to have them interpreted for you by the radiologists, and also get them sent to the oncologists you are seeing.
Hope that helps!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My wife, diagnosed with smoldering multiple myeloma
Mark T,
As usual, Nancy is spot on with her observations and recommendations. If lytic lesions are causing her lower back pain, she would indeed be diagnosed with symptomatic multiple myeloma. If you have symptomatic multiple myeloma, you begin treatment and you do not "watch and wait" as you would with a SMM diagnosis.
Also, your wife's IgG is suppressed. Since she has IgA-type SMM and her IgG is suppressed, this means she has a condition known as "immunoparesis". Immunoparesis can further compromise one's immune system (which may explain why she "catches whatever is in the air") and is also a flag for risk of progression to symptomatic myeloma. IgA-type myeloma also tends to be more aggressive, so she would be wise to keep on top of her lab numbers and routine imaging.
This isn't meant to worry you, but just to make sure that she is routinely monitored. Also, while UCSD is a great place, you want to be sure that she is working with an oncologist there that specializes in multiple myeloma.
As usual, Nancy is spot on with her observations and recommendations. If lytic lesions are causing her lower back pain, she would indeed be diagnosed with symptomatic multiple myeloma. If you have symptomatic multiple myeloma, you begin treatment and you do not "watch and wait" as you would with a SMM diagnosis.
Also, your wife's IgG is suppressed. Since she has IgA-type SMM and her IgG is suppressed, this means she has a condition known as "immunoparesis". Immunoparesis can further compromise one's immune system (which may explain why she "catches whatever is in the air") and is also a flag for risk of progression to symptomatic myeloma. IgA-type myeloma also tends to be more aggressive, so she would be wise to keep on top of her lab numbers and routine imaging.
This isn't meant to worry you, but just to make sure that she is routinely monitored. Also, while UCSD is a great place, you want to be sure that she is working with an oncologist there that specializes in multiple myeloma.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My wife, diagnosed with smoldering multiple myeloma
Thank you both, Nancy and Multibilly, for your replies / concerns. I am learning about the bone issues with multiple myeloma. To that end, all I can say is she's had several types of scans. Her PCP and hematologist-oncologist share all her health issues with each other (like her recent bout with diarrhea). But she's chosen another hematologist-oncologist at another local healthcare system for her myeloma care. She shares issues with him also from her PCP also. She also has access to all her health records at both systems.
If all this sounds confusing / worrisome, I agree somewhat, but I have to respect her choices. I will bring up these concerns with the hematologist-oncologist this August when she'll get a review of the blood test she's scheduled for then.
If all this sounds confusing / worrisome, I agree somewhat, but I have to respect her choices. I will bring up these concerns with the hematologist-oncologist this August when she'll get a review of the blood test she's scheduled for then.
-
Mark T - Name: Mark T
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 4/2016
- Age at diagnosis: 60
6 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories