Hello All,
Is a rash sometimes a symptom of smoldering myeloma?
Recently, a small dark red rash developed over a third of my abdomen. It does not itch and is not painful. The odd thing is, my eyes, hands, feet and head are very itchy. Rash started about a week ago before the other itching. No changes in soaps, food, etc. Fatigue has increased along with neuropathy pain.
Also, a quick update: MRI of spine, bone skeletal study found no lesions some stenosis, degeneration of lumbar spine with 2 bulging disks. Waiting for results from last week's fat pad biopsy to rule out amyloidosis. Oncologist wants to start monthly infusions of bisphosphonates this month.
Dennis.
Forums
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Thought it was CIDP, but is it a plasma cell disorder?
So was smoldering myeloma your final diagnosis? It's not clear from your previous postings.
Re: Thought it was CIDP, but is it a plasma cell disorder?
TerryH,
Yes, as of October, smoldering myeloma is the final diagnosis. I did receive the fat pad biopsy (Congo red stain) result today and it is negative for amyloidosis. I will be seeing the oncologist again this month (sending me a schedule of some sort), to go over all the test results from the past four months and discuss treatment options, etc. As I stated in my prior post, the doctor wants to start bisphosphonate infusions.
My wife and I do have lots of questions for him. Hopefully, we will leave there with clearer answers. This site has been a tremendous help! Thank You ALL
Yes, as of October, smoldering myeloma is the final diagnosis. I did receive the fat pad biopsy (Congo red stain) result today and it is negative for amyloidosis. I will be seeing the oncologist again this month (sending me a schedule of some sort), to go over all the test results from the past four months and discuss treatment options, etc. As I stated in my prior post, the doctor wants to start bisphosphonate infusions.
My wife and I do have lots of questions for him. Hopefully, we will leave there with clearer answers. This site has been a tremendous help! Thank You ALL
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Thought it was CIDP, but is it a plasma cell disorder?
Hello,
As Multibilly mentioned, a Congo red stain of the marrow or a fat pad biopsy does not definitely rule out amyloidosis. I also agree with his recommendation to follow up at Dana-Farber.
Good Luck,
J
As Multibilly mentioned, a Congo red stain of the marrow or a fat pad biopsy does not definitely rule out amyloidosis. I also agree with his recommendation to follow up at Dana-Farber.
Good Luck,
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Thought it was CIDP, but is it a plasma cell disorder?
Good morning J,
Are you saying that amyloidosis is still a possibility even with two negative tests?
I am unable to go to Dana Farber. It is a disappointing reality for us.
Are you saying that amyloidosis is still a possibility even with two negative tests?
I am unable to go to Dana Farber. It is a disappointing reality for us.
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Thought it was CIDP, but is it a plasma cell disorder?
If both your bone marrow biopsy and fat pad biopsy were negative, I think it's unlikely you have amyloidosis. Are you spilling a lot of protein in your urine or having heart issues?
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Thought it was CIDP, but is it a plasma cell disorder?
countrygirl,
No kidney issues thus far. This past spring I was referred to a cardiologist for a low heart rate. I was told that at some point – a few years – I will need a pacemaker.
Thank you for your response.
No kidney issues thus far. This past spring I was referred to a cardiologist for a low heart rate. I was told that at some point – a few years – I will need a pacemaker.
Thank you for your response.
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Thought it was CIDP, but is it a plasma cell disorder?
Hello Dennis,
It's my understanding from discussions with amyloidosis specialists that the fat pad biopsy will diagnosis amyloid only 75% of the time. Bone marrow biopsy is only 60% sensitive. The only way to diagnosis amyloidosis with certainty is to obtain tissue from the dysfunctional organ, which in your case would be nerves. Sometimes organ-related amyloidosis shows on a PET/CT as well.
Good Luck,
J
It's my understanding from discussions with amyloidosis specialists that the fat pad biopsy will diagnosis amyloid only 75% of the time. Bone marrow biopsy is only 60% sensitive. The only way to diagnosis amyloidosis with certainty is to obtain tissue from the dysfunctional organ, which in your case would be nerves. Sometimes organ-related amyloidosis shows on a PET/CT as well.
Good Luck,
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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