I was just diagnosed with smoldering multiple myeloma in June, 2015. At first the oncologist suspected MGUS and told me so, but I needed to have the "boat load" of labs and 24-hour urine to make sure. A few days later he called and had some of the results back, suggesting something different. He had me schedule a bone marrow biopsy and skeletal survey, which I had done the following week.
My husband and I had to wait another 2 weeks to meet with the doctor since he was on vacation. I could see my labs coming back on the electronic medical record and I was starting to think the worse. It was the most horrible 2 weeks I can ever remember.
After finally meeting and going over everything, he said I fit the smoldering criteria, but is sending me to the specialist at UCSF for consultation. Waiting to go now!
I'm 61, female, and was feeling pretty good prior to getting my annual pre-physical labs done. The nurse practitioner was the one who first called me and referred me to the oncologist. I am starting to feel like this is real and it is very scary. It sure seemed like a bad dream at first, hard to believe. Trying to enjoy everyday.
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Newly diagnosed with smoldering multiple myeloma
The usual treatment for smoldering myeloma is to careful watch and wait, many people's smoldering myeloma does not progress past smoldering for years.
And be careful what you read on the net, some net information on myeloma is out of date and does not take recent medical advances into account.
And be careful what you read on the net, some net information on myeloma is out of date and does not take recent medical advances into account.
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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: Newly diagnosed with smoldering multiple myeloma
Thank you for the reply. I've been reading as much as I can to get up to speed. This site has been very helpful.
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: Newly diagnosed with smoldering multiple myeloma
My mom has recently been diagnosed with smoldering multiple myeloma and she is also 61 years old, and lives in the Bay Area. She is waiting to get her skeletal survey and bone marrow biopsy test appointment.
@LoveParis: Were any of those tests painful and how long did it take? Should I fly over to support my mom for those tests or are they pretty simple? I was just there 2 weeks ago to support her for her lab tests and appointment with the oncologist. My dad is having a hard time with her recent diagnosis.
@LoveParis: Were any of those tests painful and how long did it take? Should I fly over to support my mom for those tests or are they pretty simple? I was just there 2 weeks ago to support her for her lab tests and appointment with the oncologist. My dad is having a hard time with her recent diagnosis.
Re: Newly diagnosed with smoldering multiple myeloma
SeekSM411-
I can only speak to your question regarding if you should be with your mom during these tests. My mom recently had a bone marrow biopsy and I can tell you, it wasn't pleasant. She handled it like a trooper but I was so glad I was in the room with her. I would go be with your Mom.
I can only speak to your question regarding if you should be with your mom during these tests. My mom recently had a bone marrow biopsy and I can tell you, it wasn't pleasant. She handled it like a trooper but I was so glad I was in the room with her. I would go be with your Mom.
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melissaanne - Name: Melissa
- Who do you know with myeloma?: My Mother
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 49
Re: Newly diagnosed with smoldering multiple myeloma
Hi,
I am awaiting a bone marrow biopsy for possible smoldering myeloma as I have moderate risk MGUS. I'm a registered nurse, age 56, with no interest in having the biopsy done under local as I have heard too many stories of how unpleasant it is. I am alone as my children live in a different city, and I've chosen to only tell a couple of friends who will take me for the biopsy if need be. I don't want to upset the family, and my 80-year old mother will have a stroke if she knows any of this.
Just to reassure you about the smoldering stage, it just has to be watched more closely than MGUS and doesn't necessarily mean that you'll progress to multiple myeloma. Unfortunately, none of us know our fate and being watched closely is key for those that have progressed from MGUS to smoldering. I have been doing an inordinate amount of reading and given that I'm an RN, I make it my business to understand this and treat myself as a layman because I'm a patient not a nurse in this situation.
Good luck with your mom, and if you feel happier being with her, it's worth the trip. The doctors do downplay the discomfort of the biopsy, but I know better
I am awaiting a bone marrow biopsy for possible smoldering myeloma as I have moderate risk MGUS. I'm a registered nurse, age 56, with no interest in having the biopsy done under local as I have heard too many stories of how unpleasant it is. I am alone as my children live in a different city, and I've chosen to only tell a couple of friends who will take me for the biopsy if need be. I don't want to upset the family, and my 80-year old mother will have a stroke if she knows any of this.
Just to reassure you about the smoldering stage, it just has to be watched more closely than MGUS and doesn't necessarily mean that you'll progress to multiple myeloma. Unfortunately, none of us know our fate and being watched closely is key for those that have progressed from MGUS to smoldering. I have been doing an inordinate amount of reading and given that I'm an RN, I make it my business to understand this and treat myself as a layman because I'm a patient not a nurse in this situation.
Good luck with your mom, and if you feel happier being with her, it's worth the trip. The doctors do downplay the discomfort of the biopsy, but I know better
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Tingling_fatigue - Who do you know with myeloma?: I have MGUS or Smoldering Myeloma
- When were you/they diagnosed?: 2.5 years ago
- Age at diagnosis: 53
Re: Newly diagnosed with smoldering multiple myeloma
I wish you very well. I know how this illness can really stay on your mind all the time. I have had a manageable form of multiple myeloma since 2008/ 2009. In other words, I am so far having good luck managing the disease with maintenance therapy, first Revlimid, now Pomalyst.
Mine is easily monitored by checking kappa levels which appear on the multiple myeloma labs. This caused me to request a monthly multiple myeloma lab to be taken, I have the physician assistant email me the lab results and I chart them myself in Excel – paying particular attention to the kappa and the M-spike and the microglobulin levels.
The labs are cheap – less than $100 when the insurance won't pay for them. This way I can chart my disease myself and not feel so helpless. It also lets me know if a certain therapy is working or not. I also note my eating and lifestyle habits for each month in case something causes a good or negative impact on my numbers.
My suggestion is to talk with you doctor and see if there is some protein marker or set of markers that can come from a low cost blood or urine test that you can routinely monitor and see for yourself the progress of your smoldering multiple myeloma. Getting involved in your own assessment will go a long way in knowing what your condition is and how effective certain treatments are. Its really up to you and how involved you wish to be.
Look up a post that I just made tonight on this topic having to do "Combating Revlimid or Pomalyst resistance."
Good luck and hopefully the disease doesn't progress!
Mine is easily monitored by checking kappa levels which appear on the multiple myeloma labs. This caused me to request a monthly multiple myeloma lab to be taken, I have the physician assistant email me the lab results and I chart them myself in Excel – paying particular attention to the kappa and the M-spike and the microglobulin levels.
The labs are cheap – less than $100 when the insurance won't pay for them. This way I can chart my disease myself and not feel so helpless. It also lets me know if a certain therapy is working or not. I also note my eating and lifestyle habits for each month in case something causes a good or negative impact on my numbers.
My suggestion is to talk with you doctor and see if there is some protein marker or set of markers that can come from a low cost blood or urine test that you can routinely monitor and see for yourself the progress of your smoldering multiple myeloma. Getting involved in your own assessment will go a long way in knowing what your condition is and how effective certain treatments are. Its really up to you and how involved you wish to be.
Look up a post that I just made tonight on this topic having to do "Combating Revlimid or Pomalyst resistance."
Good luck and hopefully the disease doesn't progress!
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smithwcs - Name: Will
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Apr 2009
- Age at diagnosis: 54
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