Sun, 04/16/2023 - 23:40
Recently had the 18 fluorodeoxyglucose (18 F-FDG) PET/CT scan done, whole body. I had a few nodes in my saliva glands, but in addition, the other abnormality is Unilateral Ischium Body SUV of 4.6. The report does not state the size, so would that indicated the ‘whole left’ ischial body is affected? The SUV 4.6 is elevated for that small bone.
I have had positive Bence Jones blood and urine proteins and positive protein electrophoresis with no M spike. I have very intractable symptoms of bone pain, lower abdomen pain and exhaustion.
So with this focal SUV 4.6 ischial body, would there probably be further testing? What tests would be next on algorithms?
Reply # - April 17, 2023, 04:32 PM
Hi Kimberly, Welcome to…
Hi Kimberly, Welcome to Grace. I'm sorry you are here and glad you've found us.
It sounds like a biopsy would be the next step. I can't speak to what the PET/CT report means. You should be able to speak to the doc who ordered the scan to find out what it means.
We have a large blood cancer video library you can find on our youtube channel. Most of our videos discuss treatment after diagnosis but here are 2 about diagnosis.
This video from February's live forum has a good explanation of diagnostic pathways at the beginning of this long 2+ hour forum.
From the leukemia lymphoma society here is a doc "Understanding MM and Lab Values". I think it will go well with the forum video.
This video from our youtube channel also about diagnosis. At time 4:45 Dr. Ruiz focuses on multiple myeloma though much of what is discussed prior is relevant. You may already know some of this but there is something of a flow chart/if this then...path with blood work, symptoms, and scans that may point to a possible bone marrow biopsy. Also in this video Ruiz explains the importance of bone biopsy to learn is the process is high risk or low risk, etc.
I hope this is helpful. If you still have questions let us know I may need to reach out to one of our faculty.
All the best,
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - April 18, 2023, 10:15 AM
Please reach out with any more questions
Hi Kimberly and we're so glad that you're here and working so hard to find the answers you need. If, after looking at the resources that Janine provided to you, you have more questions (totally understandable!), please reach back out. We're here to help you find the answers you're looking for and educate you on the options in your path.
Executive Director of GRACE since 2017. Joined GRACE to ensure that all patients and caregivers are empowered to obtain equal access to education about treatment options.