I was diagnosed with solitary plasmacytoma in right iliac crest in November 2014. Abnormal proteins found on visit to neurologist for sudden onset of peripheral neuropathy causing numbness in my feet and lower legs and loss of balance when standing still.
I have gone through my radiation but have more pain in my hip than before and, although the neuropathy symptoms improved halfway through radiation, they have not changed since.
I am so frustrated and depressed since this has been going on since June. I am finding it hard to take care of my kids and carry on a normal life. I am 45 years old but feeling older these days.
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Re: Solitary plasmacytoma of the bone
Hi Bev,
I was also diagnosed with a large solitary bone plasmacytoma (SBP) end of October 14. I have also undergone radiotherapy. Radiotherapy greatly increased my pain to the extent that I am still currently taking slow release morphine. They told me prior to radiotherapy that this would decrease my pain, this has not happened at all.
I am 47 and female, with 3 children, so can relate to what you are currently going through. The lack of consistent and good quality data is also very frustrating, considering that the curative rate is 50% at best, at least this is what my radiation oncologist has told me, and the studies I have read actually say worse.
It is really hard when you read the data to know what your outcome will be. SBP is undoubtly the poor relation in regard to clinical studies, and up to date data, in the myeloma realm.
Hang in there. I hope you are having all the relevant testing and support.
Suzanne
I was also diagnosed with a large solitary bone plasmacytoma (SBP) end of October 14. I have also undergone radiotherapy. Radiotherapy greatly increased my pain to the extent that I am still currently taking slow release morphine. They told me prior to radiotherapy that this would decrease my pain, this has not happened at all.
I am 47 and female, with 3 children, so can relate to what you are currently going through. The lack of consistent and good quality data is also very frustrating, considering that the curative rate is 50% at best, at least this is what my radiation oncologist has told me, and the studies I have read actually say worse.
It is really hard when you read the data to know what your outcome will be. SBP is undoubtly the poor relation in regard to clinical studies, and up to date data, in the myeloma realm.
Hang in there. I hope you are having all the relevant testing and support.
Suzanne
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KiwiMum - Name: Suzanne M
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: July
- Age at diagnosis: 47
Re: Solitary plasmacytoma of the bone
Hi Bev,
Sorry to hear about your situation. It does sound painful.
When you were diagnosed, what sort of imaging was done to determine if you had a SBP? If only an xray was done, you might want to consider a PET/CT or whole body MRI to look for any occult lesions.
Sorry to hear about your situation. It does sound painful.
When you were diagnosed, what sort of imaging was done to determine if you had a SBP? If only an xray was done, you might want to consider a PET/CT or whole body MRI to look for any occult lesions.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Solitary plasmacytoma of the bone
Hi!
I went through a skeletal survey, a biopsy in both hips with an aspiration, another biopsy with guided CT directly in lesion, and a PET scan. The lesion on my hip was about 5 cm, but I was not in much pain but was having trouble walking.
I am back to work now but finding it difficult to function normal due to neuropathy and hip pain that gets worse as the day progresses. My hematologist and neurologist think the tumor is causing neuropathy, but the oncologist is not convinced.
I went through a skeletal survey, a biopsy in both hips with an aspiration, another biopsy with guided CT directly in lesion, and a PET scan. The lesion on my hip was about 5 cm, but I was not in much pain but was having trouble walking.
I am back to work now but finding it difficult to function normal due to neuropathy and hip pain that gets worse as the day progresses. My hematologist and neurologist think the tumor is causing neuropathy, but the oncologist is not convinced.
Re: Solitary plasmacytoma of the bone
Hi Bev,
Are you getting myeloma-related lab work done regularly? If so, what are your blood tests showing in terms of things like your immunoglobulin levels, signs of an M-spike / monoclonal protein, free light chain levels, and your hemoglobin, creatinine, and calcium levels?
Are you getting myeloma-related lab work done regularly? If so, what are your blood tests showing in terms of things like your immunoglobulin levels, signs of an M-spike / monoclonal protein, free light chain levels, and your hemoglobin, creatinine, and calcium levels?
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JimNY
Re: Solitary plasmacytoma of the bone
I finished 5 weeks radiation on January 13. I am scheduled to go in every 3 months for bloodwork and CT scan on March 18.
My M-spike was never that high - 3.8. They actually thought I had amyloidosis at first because of the neuropathy in my legs and feet.
My calcium and creatinine were normal. Only after skeletal survey did they find lesion. First bone marrow biopsy in hip was normal so they performed 2nd directly in lesion with CT guidance, which showed abnormal. PET scan showed only one lesion.
My M-spike was never that high - 3.8. They actually thought I had amyloidosis at first because of the neuropathy in my legs and feet.
My calcium and creatinine were normal. Only after skeletal survey did they find lesion. First bone marrow biopsy in hip was normal so they performed 2nd directly in lesion with CT guidance, which showed abnormal. PET scan showed only one lesion.
Re: Solitary plasmacytoma of the bone
Hi Bev,
What were the units for your M-spike measurement of 3.8? There are two units typically used, either g/dL or g/L. If you're in the U.S., then the units were probably g/dL. If you're outside the U.S., the units are more likely to be g/L.
The M-spike is generally reported on the serum protein electrophoresis (SPEP) lab report. It will be called something like monoclonal protein level, paraprotein level, abnormal protein band, or M-spike.
In less frequent cases, the M-spike is reported as a percentage, in which case you have to find the total protein amount in the report and multiple it by the M-spike percentage to get the M-spike absolute level.
What were the units for your M-spike measurement of 3.8? There are two units typically used, either g/dL or g/L. If you're in the U.S., then the units were probably g/dL. If you're outside the U.S., the units are more likely to be g/L.
The M-spike is generally reported on the serum protein electrophoresis (SPEP) lab report. It will be called something like monoclonal protein level, paraprotein level, abnormal protein band, or M-spike.
In less frequent cases, the M-spike is reported as a percentage, in which case you have to find the total protein amount in the report and multiple it by the M-spike percentage to get the M-spike absolute level.
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JimNY
Re: Solitary plasmacytoma of the bone
Hi there, have your Dr.'s looked into the possibility of you having POEMS Syndrome? I have POEMS Syndrome and had only one lesion ( had 28 rounds of radiation ) with tons of neuropathy in both hands and feet. Most labs were normal except for the M Spike and VEGF levels which is known to be elevated in POEMS Syndrome. Might be something to bring up with your Dr.'s.
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TanjaIN
9 posts
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