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Old Fri Aug 25, 2017, 05:17 PM
Joan C Joan C is offline
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Join Date: Aug 2017
Location: Placerville, California
Posts: 3
Question PET scan in Aplastic Anemia

Hello,

My name is Joan and I was diagnosed with Aplastic Anemia and PNH in November of 2016. In December of the same year I underwent ATG treatment and am currently taking cyclosporine treatment.

I have not been transfusion dependent since February 2017, and my doctor has been tapering my cyclosporine starting in May 2017. He says I’m headed for remission for the time being.

For the most part, I do feel improved health with one exception: I have had pain in my lower back, pelvic, hips and legs since my first bone marrow biopsy. From this pain I also get extreme muscle spasms, primarily at night, when I try to re-position myself to try to get comfortable. It hurts terribly to lie on my back or either side. My sleep is constantly disturbed. I have pain throughout the day and sometimes experience muscle spasms as well, though not as often as at night.

I bring this up to my health care team during every visit and each time I’m told it’s unrelated to the AA. Because these symptoms have worsened, my PCP prescribed pain medication and muscle relaxants. These have been mostly ineffective.

In July 2017, after an episode of such unbearable pain, I requested my PCP refer me for an MRI to look for the cause. The results showed heterogeneous patchy foci scattered throughout the vertebral bodies. The largest and most discrete lesion involving T11, T12, L2-L5 and upper sacrum. My PCP then ordered an urgent PET scan and these results were: Numerous hypermetabolic bone lesions are seen distributed throughout the predominantly axial skeleton. Lesions are seen within the sacrum, iliac bones, multiple vertebral bodies and right femur.

These findings have led to another BM biopsy and other various work ups to determine diagnosis. My Oncology team, so far, have not reached a conclusion and suggest a referral to an Ortho Surgeon for a biopsy of one of the lesions seen in my spine.

Meanwhile, I have done some research and found an article entitled F-fluorodeoxyglucose PET/CT in aplastic anemia: a literature review and the potential of computational approach in a 2014 Future Medicine Ltd., an online Clinical Practice newsletter (I believe) that proposed using (FDG) PET/CT as a noninvasive evaluation of BM extension and metabolism in different AA stages. The results of a small controlled study showed “The presence of several hypermetabolic uptake areas was related to BM hypo/aplasia, while homogeneous, low grade FDG uptake was observed in patients in clinical remission.”

One of my doctors, after reviewing my scans said: “Although we don’t have any other AA patients to compare to (because none have had a PET scan) that these lesions could represent areas where bone, void of bone marrow, could be in a stage of regeneration.” Her reason was because the uptake seen in my scans were low whereas if it was cancerous, it would likely emit higher.

My question is – has anyone else with AA ever had a PET scan revealing findings similar to mine? If so, what was the outcome?
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Joan; diagnosed AA and PNH in October, 2016; treated with ATG in December, 2016; currently on cyclosporine.
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