Hi!
I was diagnosed with smoldering myeloma. My M-spike is 1.6 g/dL, plasma cells are "at least 20%", and chromosomal abnormalities are t(4;14) 14q32 13q. At one time it showed 17p but now it's not showing up.
I'm 40. About 8 months ago I kept waking up with a sore neck like I slept on it wrong. It kept getting worse to the point where I was in a neck brace, but nothing showed up on an X-ray. I went through physical therapy and it just continued to get worse. Three months ago I had an MRI that didn't show anything was wrong even though my arms were going numb, pain into my finger,s and in a continuous migraine state at that point and severe spasms. Recently, it's become so swollen on the back of my neck that it's a knot the size of a golf ball.
I'm so frustrated. I had a PET scan done Friday because the hematologist is concerned with the swelling and I'm in bed mostly now.
The doctor is considering paraneoplasma syndrome. I have chronic fevers, flushing, night sweats, chills. She also put me at high risk . I saw a specialist two years ago when I was first diagnosed.
Could a lesion not show up on an MRI? From what I've posted am I really considered high risk? Any response is appreciated. Thank you
Treatments:
Gabapentin
Physical therapy
Chiropractor
Massage
Botox
Muscle relaxers
Rest
Steroid epidural injections
Forums
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
Hi Michelle,
This sounds frustrating and scary for you and we can all relate.
Technically, a t(4;14) mutation does put you at a high risk smoldering classification, cytogenetic-wise. See table 2 in the article in this link:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
A PET/CT sounds like a really smart move under the circumstances since both an xray and an MRI failed to reveal any issues. The PET/CT test results will light up like a candle in the dark if you have any multiple myeloma cancer in your neck and I hope you get some results back from the radiologist soon.
But keep in mind that any imaging is only as good as the radiologist interpreting the results. It therefore may not hurt to get your MRI results interpreted by another radiologist.
You can find a good discussion on the tradeoffs of various imaging modalities here:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
As you will often hear on this forum, there is no substitute for working with a top multiple myeloma specialist, but folks often have different impressions of what constitutes a multiple myeloma "specialist". Do you mind sharing where you where seen by a specialist? If you let us know what city you are in, folks can make some recommendations on where they think you might be well served to get another opinion.
This sounds frustrating and scary for you and we can all relate.
Technically, a t(4;14) mutation does put you at a high risk smoldering classification, cytogenetic-wise. See table 2 in the article in this link:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
A PET/CT sounds like a really smart move under the circumstances since both an xray and an MRI failed to reveal any issues. The PET/CT test results will light up like a candle in the dark if you have any multiple myeloma cancer in your neck and I hope you get some results back from the radiologist soon.
But keep in mind that any imaging is only as good as the radiologist interpreting the results. It therefore may not hurt to get your MRI results interpreted by another radiologist.
You can find a good discussion on the tradeoffs of various imaging modalities here:
https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
As you will often hear on this forum, there is no substitute for working with a top multiple myeloma specialist, but folks often have different impressions of what constitutes a multiple myeloma "specialist". Do you mind sharing where you where seen by a specialist? If you let us know what city you are in, folks can make some recommendations on where they think you might be well served to get another opinion.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nervous - high-risk smoldering multiple myeloma?
Thank you for your answer!
When I was first diagnosed, I went to Rochester, Minnesota to see Dr. Dispenzieri at the Mayo Clinic. At that time, plasma cells were at 10-15% and that was 2 years ago.
At this time, I live in northern California and I see my local hematologist. I really don't have the finances to travel to Mayo Clinic and even a 30 minute drive puts me into severe pain, so I can't imagine traveling so far.
I forgot to mention that my free light chain ratio is at 27.
Thanks again.
When I was first diagnosed, I went to Rochester, Minnesota to see Dr. Dispenzieri at the Mayo Clinic. At that time, plasma cells were at 10-15% and that was 2 years ago.
At this time, I live in northern California and I see my local hematologist. I really don't have the finances to travel to Mayo Clinic and even a 30 minute drive puts me into severe pain, so I can't imagine traveling so far.
I forgot to mention that my free light chain ratio is at 27.
Thanks again.
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
I have been reading some of the articles you posted. I want to add that it says CD56 1+ , CD139 4+ , IGH 14 q32
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
Dr. Dispenzieri is well respected in multiple myeloma circles ... and it sounds like you are pretty well in the know based on your questions and if you were being seen at the Mayo. UCSF is a good choice if you are in the bay area. Stanford is also used by some folks on this forum. UC Davis has also been used by some of the folks on the forum, especially if you are north of SF:
See this link for contact info:
https://myelomabeacon.org/resources/treatment-centers/#California
Lastly, note that measuring bone marrow plasma cell percentages (BMPCs) is kind of a hit-and-miss process since the disease is so patchy and not uniformly distributed in one's bone marrow. So, even though your BMPC was 15% before and is now "at least 20%", it could have been at 20% or so before. The same goes for your del 17p mutation coming and going (it could still be there, but just not caught in your bone marrow sample this time around).
Nothing is easy when it comes to this disease.
See this link for contact info:
https://myelomabeacon.org/resources/treatment-centers/#California
Lastly, note that measuring bone marrow plasma cell percentages (BMPCs) is kind of a hit-and-miss process since the disease is so patchy and not uniformly distributed in one's bone marrow. So, even though your BMPC was 15% before and is now "at least 20%", it could have been at 20% or so before. The same goes for your del 17p mutation coming and going (it could still be there, but just not caught in your bone marrow sample this time around).
Nothing is easy when it comes to this disease.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nervous - high-risk smoldering multiple myeloma?
Thank you so much once again. I have been reading the Blood Cancer Journal article and I looked through some of my bone marrow biopsy results from a few years back. It was noted at that time that I had t94;140, -17p, +1q.
I read in the article that people with these abnormalities usually present with kidney problems rather than bone problems.
I am definitely going to look into specialists in San Francisco. That is about 6 hours from me because I am as north as you get in California, but I do have family in San Francisco.
Thank you so, so much.
I read in the article that people with these abnormalities usually present with kidney problems rather than bone problems.
I am definitely going to look into specialists in San Francisco. That is about 6 hours from me because I am as north as you get in California, but I do have family in San Francisco.
Thank you so, so much.
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
Upper northern CA by the Oregon border is to die for. Lucky you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nervous - high-risk smoldering multiple myeloma?
My PET scan came back with only a small lesion on the skin of my foot (strange place as I have never had any skin cancer). I have only read the report for myself. Of course I am still in a very painful situation with no answers. I'm sure I will get to the bottom of it soon and I feel much better knowing that there aren't any lesions in the neck area or any bone lesions for that matter.
Another thing was that the doctor wonders if I could have paraneoplastic syndrome.
Another thing was that the doctor wonders if I could have paraneoplastic syndrome.
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Michelle76 - Name: Michelle
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Smoldering 2014
- Age at diagnosis: 38
Re: Nervous - high-risk smoldering multiple myeloma?
I have never heard of paraneoplastic syndrome before now
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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: Nervous - high-risk smoldering multiple myeloma?
This sounds like a very unusual situation. So sorry to hear you are going through this. Paraneoplastic syndromes are most common in breast, ovarian, and lung cancer as well as lymphoma. They are not common in multiple myeloma. I did not see any mention in your post that you have seen a neurologist. If you have not, it would definitely be worth it. If there is another cause for your numbness, pain, and spasms, they may be better able to diagnose it than your hematologist.
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
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