Hello Dennis,
Sounds to me as though you might greatly benefit from IVIG treatments. You have immunoparesis and CIDP and they both have a high rate of response to this therapy. Maybe you should start there, if not already.
Best,
J
Forums
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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: Treatment of smoldering myeloma without CRAB symptoms
Hello J,
In 2012 I received IVIG as treatment for the CIDP. Unfortunately, on day three of the infusion, I developed aseptic meningitis. At that time, my neurologist told me I can never have IVIG again. He also would not even consider doing plasmapheresis as an alternative. Therefore, my only option has been medication.
I was forced to retire early in 2013 due to the progression of the CIDP. And now the smoldering myeloma. My oncologist says, "Your case is quite puzzling".
In 2012 I received IVIG as treatment for the CIDP. Unfortunately, on day three of the infusion, I developed aseptic meningitis. At that time, my neurologist told me I can never have IVIG again. He also would not even consider doing plasmapheresis as an alternative. Therefore, my only option has been medication.
I was forced to retire early in 2013 due to the progression of the CIDP. And now the smoldering myeloma. My oncologist says, "Your case is quite puzzling".
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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: Treatment of smoldering myeloma without CRAB symptoms
Hello Everyone,
I had a PET/CT, 24-hour urine collection, and MRI of the thoracic spine last week. All results will be discussed at my follow-up appointment with my oncologist this Thursday.
At the time of my PET/CT I asked the imaging center if they could mail me a copy of the PET/CT report (results) for my own records. I received the report today, it reads:
"There is a Massive Conglomerate of Lymph Nodes in the pre-vertebral soft tissues of the thoracolumbar junction. The maximum SUV is 11.6."
Can multiple myeloma spread to the lymph nodes? I know I will have answers Thursday, just wondering how common this finding is?
Also PET/CT showed Increased uptake in two ribs, top of right thigh bone, pelvic bone Apparently, I also have an enlarged heart with coronary artery disease with pleural effusion in both lungs.
I was a bit taken back after reading the report.
Thank you for reading my post. This site gives my wife and I great comfort. God Bless you all!
Dennis
I had a PET/CT, 24-hour urine collection, and MRI of the thoracic spine last week. All results will be discussed at my follow-up appointment with my oncologist this Thursday.
At the time of my PET/CT I asked the imaging center if they could mail me a copy of the PET/CT report (results) for my own records. I received the report today, it reads:
"There is a Massive Conglomerate of Lymph Nodes in the pre-vertebral soft tissues of the thoracolumbar junction. The maximum SUV is 11.6."
Can multiple myeloma spread to the lymph nodes? I know I will have answers Thursday, just wondering how common this finding is?
Also PET/CT showed Increased uptake in two ribs, top of right thigh bone, pelvic bone Apparently, I also have an enlarged heart with coronary artery disease with pleural effusion in both lungs.
I was a bit taken back after reading the report.
Thank you for reading my post. This site gives my wife and I great comfort. God Bless you all!
Dennis
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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: Treatment of smoldering myeloma without CRAB symptoms
Hi Dennis,
I was just searching the forum and found this thread. I was wondering how you were doing and what you learned from your doctors visit.
Eileen
I was just searching the forum and found this thread. I was wondering how you were doing and what you learned from your doctors visit.
Eileen
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Eileenk - Name: Eileen
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Smoldering, September 2017
- Age at diagnosis: 49
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