I just went to my appointment. I was trying to get some feedback before I went so I'd know what to expect. Thank you for answering! It indeed was a diagnosis of smoldering myeloma. I had a full body x-ray and everything looked good on that. So I'm hoping to be smoldering for a very long time – like forever!
I'm going to be monitored every 3 months. That sound like a normal plan of action for this?
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Re: Could I have multiple myeloma?
Getting tested every 3 months sounds right for your circumstances.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
Thank you for taking the time to answer all my questions, Multibilly!
Unfortunately, my hope to be smoldering forever may not be happening. My doctor told me today I'd most likely be doing chemotherapy within the next 5 years. I don't know exactly why she would think this though.
Unfortunately, my hope to be smoldering forever may not be happening. My doctor told me today I'd most likely be doing chemotherapy within the next 5 years. I don't know exactly why she would think this though.
Re: Could I have multiple myeloma?
I hate when doctors say those sorts of things since they don't know for sure that you will progress in 5 years. Yes, like me, you are classified as having a high risk of progression to symptomatic multiple myeloma. In your case, you are considered high risk because you have IgA smoldering multiple myeloma and that does indeed incur a higher chance of progression than other isotypes (IgG, etc). But it is not a given that you will progress in 5 years.
In my case, I had two multiple myeloma specialists tell me that I would likely be looking at a transplant in one year after my diagnosis. It's been 3 3/4 years since my diagnosis and my numbers are flat and I still have no signs of developing any CRAB. I never went back to see those doctors again (especially since they told me my only option for treatment at their facilities was a transplant).
In my case, I had two multiple myeloma specialists tell me that I would likely be looking at a transplant in one year after my diagnosis. It's been 3 3/4 years since my diagnosis and my numbers are flat and I still have no signs of developing any CRAB. I never went back to see those doctors again (especially since they told me my only option for treatment at their facilities was a transplant).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
I'm glad those doctors were wrong, Multibilly. I really hate when they make these pronouncements to patients. It is really unfair. I know they think they are doing us a favor in the interests of full disclosure, but they don't have a crystal ball.
When I was first diagnosed, I had a really fast, quite dramatic response to Revlimid, Velcade, and dexamethasone (RVD) treatment, administered by a regular hematologist / oncologist. I decided to see a well known myeloma specialist for a second opinion, and so that I could have a myeloma specialist on my team. This guy did not believe my response to treatment and proceeded to tell me that the labs were probably wrong, and that the lab equipment had probably malfunctioned, and given false results. He even explained to me the process by which the equipment had malfunctioned.
Of course, I was very upset. I felt that he had taken away a very positive ray of hope. These test results were verified by my oncologist, and, fortunately, the testing that the myeloma specialist did also reflected the same response. I was pretty angry, I will tell you. I would not have had a problem if the myeloma specialist had said he had to verify the labs (which he was going to do anyway), to make sure the response was really this good. It's all in the way it's expressed to the patient.
I wish you both a long lifetime of smoldering. Prove those docs wrong!
Ellen Harris
When I was first diagnosed, I had a really fast, quite dramatic response to Revlimid, Velcade, and dexamethasone (RVD) treatment, administered by a regular hematologist / oncologist. I decided to see a well known myeloma specialist for a second opinion, and so that I could have a myeloma specialist on my team. This guy did not believe my response to treatment and proceeded to tell me that the labs were probably wrong, and that the lab equipment had probably malfunctioned, and given false results. He even explained to me the process by which the equipment had malfunctioned.
Of course, I was very upset. I felt that he had taken away a very positive ray of hope. These test results were verified by my oncologist, and, fortunately, the testing that the myeloma specialist did also reflected the same response. I was pretty angry, I will tell you. I would not have had a problem if the myeloma specialist had said he had to verify the labs (which he was going to do anyway), to make sure the response was really this good. It's all in the way it's expressed to the patient.
I wish you both a long lifetime of smoldering. Prove those docs wrong!
Ellen Harris
Re: Could I have multiple myeloma?
It's so nice to hear the positive stories. I'm so glad you continue to be stable! And really hope you remain that way forever!
I was so confused at my appointment. I didn't really understand that smoldering is actually a cancer diagnosis until she told me "I know it's horrible to get a cancer diagnosis". Is it actually considered that?
I was so confused at my appointment. I didn't really understand that smoldering is actually a cancer diagnosis until she told me "I know it's horrible to get a cancer diagnosis". Is it actually considered that?
Re: Could I have multiple myeloma?
I personally believe that smoldering multiple myeloma is a diagnosis of cancer that exists on the continuum of myeloma that stretches from MGUS to smoldering multiple myeloma to multiple myeloma. My doctors have also told me it is cancer and that's what I've always accepted. But others have taken exception to this definition. You might want to read through this thread:
"Is smoldering multiple myeloma cancer?" (forum disc. started Jan. 30, 2016)
"Is smoldering multiple myeloma cancer?" (forum disc. started Jan. 30, 2016)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could I have multiple myeloma?
My smoldering myeloma moved kind of fast. I am starting treatment now. Had a cT scan for pain and found several lesions on my pelvis. Was hoping this day would never come, but here it is less then a year after being diagnosed as smoldering and I'm now active and beginning treatment.
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