Can a person feel ill with smoldering myeloma?
I feel silly posting here with what seems to be silly questions.
Maybe because I am 71, have been healthy my entire life and hated to complain with any ailment.
I am smoldering, have CLL/SLL possibly B- cell lymphocytosis.
Every day there are times I feel weak, sick to my stomach, and just plain old bad. Is this normal?
I have been through three myeloma specialists. All just seem to ignore my results and complaints.
As I said, I have never been a "whiner" about my health, just am concerned as to why I feel so bad?
Forums
6 posts
• Page 1 of 1
-
penbed - Name: Jack D. Lovett
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 70
Re: Feeling ill with smoldering myeloma: is that normal?
Hello,
I am currently a multiple myeloma patient that started with MGUS and then smoldering myeloma. I peruse the smoldering myeloma forum frequently because I found it a very different diagnosis to manage and I empathize with all smolderers out there who constantly contemplate if their persistent symptoms are related to their potentially progressive disease.
I was diagnosed with MGUS by my PCP because I was always sick. I was referred to a hematologist/ oncologist who monitored my condition for a number of years. As the years ticked by, I got sicker and he insisted that my symptoms were not the MGUS, and so I went to several specialists with hopes of finding what might be wrong in an effort to feel better. When they found nothing but the MGUS, I went back to my oncologist and he refused to do a bone marrow biopsy because my M-spike had been stable for years and he didn't see the need. I had never had a baseline bone marrow biopsy.
In desperation, I finally changed oncologists and the new doctor said "Of course it is the myeloma that is causing you to feel badly". He explained to me that I had low IgA and very, very low IgM (my uninvolved immunoglobulins) and that I wasn't making much normal IgG (involved immunoglobulin) and that my immune system was very compromised. A misbehaving immune system can be quite troubling. I suffered from chemical sensitivity (one cup of coffee at 7 a.m. would keep me awake until 3 a.m., and I couldn't go into a department store with all the newly minted plastic without passing out), I had postural orthostatic tachycardia syndrome (POTS), I had food sensitivity and was always itchy, I had viral sensitivity and caught every virus I should have built an immunity to since childhood (having varicella three times should have been a clue that I wasn't building immunity, but my first doctor missed that). Most significantly, I suffered from bacterial infections and was on antibiotics about 4-6 times a year.
Most people who have multiple myeloma have high numbers of their involved Immunoglobulin but mine was in range. Having low or normal range involved immunoglobulins doesn't concern most doctors, but this new guy knew it was a problem. He said my normal IgG was only "25" and then he prescribed IVIG and I was able to function once again. The calculation he did was my M-Spike 1.3 multiplied by 1000 (1300) and then subtracting my total IgG from that number. 1325-1300 = 25 (basically the reverse of the calculation Cheryl does in this forum thread). I was operating with low IgG, IgM, IgA and I was neutropenic and hence I didn't feel well at all and I was at risk for serious infections.
I suggest you look at these numbers closely because, yes, smoldering patients do get sick from their multiple myeloma. Stable disease doesn't mean symptom free. I was able to benefit from IVIG for 3 years as a smoldering patient before I progressed to symptomatic / active multiple myeloma. My normal IgG is about 600 now but I'll continue to receive IVIG until it is above 750 or until insurance stops paying.
I apologize for the long post but I really suffered as a smoldering patient and I was deeply distracted by not feeling well and not knowing what was wrong with me.
Best
J
I am currently a multiple myeloma patient that started with MGUS and then smoldering myeloma. I peruse the smoldering myeloma forum frequently because I found it a very different diagnosis to manage and I empathize with all smolderers out there who constantly contemplate if their persistent symptoms are related to their potentially progressive disease.
I was diagnosed with MGUS by my PCP because I was always sick. I was referred to a hematologist/ oncologist who monitored my condition for a number of years. As the years ticked by, I got sicker and he insisted that my symptoms were not the MGUS, and so I went to several specialists with hopes of finding what might be wrong in an effort to feel better. When they found nothing but the MGUS, I went back to my oncologist and he refused to do a bone marrow biopsy because my M-spike had been stable for years and he didn't see the need. I had never had a baseline bone marrow biopsy.
In desperation, I finally changed oncologists and the new doctor said "Of course it is the myeloma that is causing you to feel badly". He explained to me that I had low IgA and very, very low IgM (my uninvolved immunoglobulins) and that I wasn't making much normal IgG (involved immunoglobulin) and that my immune system was very compromised. A misbehaving immune system can be quite troubling. I suffered from chemical sensitivity (one cup of coffee at 7 a.m. would keep me awake until 3 a.m., and I couldn't go into a department store with all the newly minted plastic without passing out), I had postural orthostatic tachycardia syndrome (POTS), I had food sensitivity and was always itchy, I had viral sensitivity and caught every virus I should have built an immunity to since childhood (having varicella three times should have been a clue that I wasn't building immunity, but my first doctor missed that). Most significantly, I suffered from bacterial infections and was on antibiotics about 4-6 times a year.
Most people who have multiple myeloma have high numbers of their involved Immunoglobulin but mine was in range. Having low or normal range involved immunoglobulins doesn't concern most doctors, but this new guy knew it was a problem. He said my normal IgG was only "25" and then he prescribed IVIG and I was able to function once again. The calculation he did was my M-Spike 1.3 multiplied by 1000 (1300) and then subtracting my total IgG from that number. 1325-1300 = 25 (basically the reverse of the calculation Cheryl does in this forum thread). I was operating with low IgG, IgM, IgA and I was neutropenic and hence I didn't feel well at all and I was at risk for serious infections.
I suggest you look at these numbers closely because, yes, smoldering patients do get sick from their multiple myeloma. Stable disease doesn't mean symptom free. I was able to benefit from IVIG for 3 years as a smoldering patient before I progressed to symptomatic / active multiple myeloma. My normal IgG is about 600 now but I'll continue to receive IVIG until it is above 750 or until insurance stops paying.
I apologize for the long post but I really suffered as a smoldering patient and I was deeply distracted by not feeling well and not knowing what was wrong with me.
Best
J
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Feeling ill with smoldering myeloma: is that normal?
jhorner,
Thank you so much for your post!
It is so helpful knowing what I am going through can be "normal" for someone with smoldering myeloma.
.
I still feel guilty when having bad days for my wife and family as I have always been the go to guy for everything and now I am becoming more and more dependent on them,
Anyway, thanks again.
Penbed
Thank you so much for your post!
It is so helpful knowing what I am going through can be "normal" for someone with smoldering myeloma.
.
I still feel guilty when having bad days for my wife and family as I have always been the go to guy for everything and now I am becoming more and more dependent on them,
Anyway, thanks again.
Penbed
-
penbed - Name: Jack D. Lovett
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 70
Re: Feeling ill with smoldering myeloma: is that normal?
HI Jack,
It is hard to say what is "normal" with smoldering myeloma. While smoldering myeloma is classed as 'asymptomatic', that is in relation to the multiple myeloma 'CRAB' criteria for diagnosis . This does not mean, however, that your health will not be affected by smoldering myeloma.
I have smoldering myeloma and have experienced 12 months of extreme tiredness, weight loss, and constant infection to the point I have had to go from full-time to part-time work. I have had low IgM for 12 months and after having had a run of 3 months continual chest, throat, sinus, and urinary tract infections and repeat low gamma globulin results, my oncologist has explained to me that while the smoldering myeloma is stable (paraprotein is stable at 20, and has been for 12 months), that the smoldering myeloma appears to be impacting my immune system and he has now discussed with me the option of starting immune replacement therapy.
So the point I make is that while your smoldering myeloma may remain stable, this does not mean your health cannot be impacted by it, thus your feeling unwell could be related to smoldering myeloma. I would say discuss your gamma globulin results with your oncologist and raise the concerns about feeling unwell. There are treatments that can help if your immune system is affected.
I hope you find some reprieve.
It is hard to say what is "normal" with smoldering myeloma. While smoldering myeloma is classed as 'asymptomatic', that is in relation to the multiple myeloma 'CRAB' criteria for diagnosis . This does not mean, however, that your health will not be affected by smoldering myeloma.
I have smoldering myeloma and have experienced 12 months of extreme tiredness, weight loss, and constant infection to the point I have had to go from full-time to part-time work. I have had low IgM for 12 months and after having had a run of 3 months continual chest, throat, sinus, and urinary tract infections and repeat low gamma globulin results, my oncologist has explained to me that while the smoldering myeloma is stable (paraprotein is stable at 20, and has been for 12 months), that the smoldering myeloma appears to be impacting my immune system and he has now discussed with me the option of starting immune replacement therapy.
So the point I make is that while your smoldering myeloma may remain stable, this does not mean your health cannot be impacted by it, thus your feeling unwell could be related to smoldering myeloma. I would say discuss your gamma globulin results with your oncologist and raise the concerns about feeling unwell. There are treatments that can help if your immune system is affected.
I hope you find some reprieve.
-
Sandi G - Name: Sandi G
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 59
Re: Feeling ill with smoldering myeloma: is that normal?
Hi J;
Using your formula, M Spike-2.3 x 1000= 2300, lgG 2,937 = -673.
Not sure what -673 means with your formula?
All I know is I am sick and tired of being sick and tired!
Using your formula, M Spike-2.3 x 1000= 2300, lgG 2,937 = -673.
Not sure what -673 means with your formula?
All I know is I am sick and tired of being sick and tired!
-
penbed - Name: Jack D. Lovett
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 70
Re: Feeling ill with smoldering myeloma: is that normal?
Penbed,
Your normal (healthy) IgG level= Total IgG - Mspike = 2937 mg/dL - 2300 mg/dL = 637 mg/dL
You should then compare that healthy IgG level to the reference range listed for your total IgG level in your lab results. Assuming a normal IgG reference range of 700-1600 mg/dL, that would put you slightly under normal for your healthy IgG level. But again, you should use your own lab's reference range to make this determination.
Your normal (healthy) IgG level= Total IgG - Mspike = 2937 mg/dL - 2300 mg/dL = 637 mg/dL
You should then compare that healthy IgG level to the reference range listed for your total IgG level in your lab results. Assuming a normal IgG reference range of 700-1600 mg/dL, that would put you slightly under normal for your healthy IgG level. But again, you should use your own lab's reference range to make this determination.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
6 posts
• Page 1 of 1