Posts by steelmason

I just stumbled upon this thread. My father is also going through a series of tests due to severe back pain.

The MRI of the lumbar segment suggests "probable" metastatic lesions involving osteolytic changes in the L1 vertebral body and the right pedicle of the T12 vertebra. There is initial spinal canal obstruction at the L1 level. Vertebral body height is preserved. He has been fitted with a Milwaukee brace.

It’s been two weeks since we started seeing specialists. We’ve already done a PET/CT and are currently waiting on those results. A bone marrow biopsy confirmed there is no connection to CLL—which is what the hematologists claimed—but get this: a neurosurgeon (!) wrote on the MRI report that these changes are part of a primary CLL malignancy. Can you believe that? We still don't have any clear answers. We haven't been referred to an oncologist yet, so we're essentially flying blind. I'm heading in today for blood markers; either we'll discover a cancer we didn't know about, or the source will remain a mystery.

It is difficult to process whether my father is facing the end very soon. If the source remains unknown, is there any chance these metastases could be partially treated to improve his mobility, or is he stuck in this brace indefinitely?

I feel like I'm hitting a wall. Every time I ask a question, they just pass me off to another department. I haven't received a straight answer; we are constantly playing catch-up with various test results. He is on medication and has a high pain tolerance, but I am truly lost. Should I push for a vertebral biopsy, or would that be a mistake that causes these lesions to spread further? They have already performed a bone marrow puncture and a bone biopsy via the hip, and we are still waiting on that specific result.

Will the PET/CT results finally give us some clarity? I would appreciate any advice if anyone has it.

Hi everyone,
I’m looking for some advice regarding my father’s health situation.

My dad is dealing with CLL, which is currently being managed without active therapy. Because of some intense back pain, he underwent an MRI, and the results suggested "metastatic lesions resulting from CLL." However, we are getting conflicting reports: his hematologist insists the spinal changes aren't linked to the CLL, while the neurosurgeon disagrees. It’s incredibly frustrating trying to navigate this because time is ticking. He’s been stuck at home for a week now, barely able to move due to the pain. He was extremely active until just last week, but now he's mostly sidelined by medication. To add to the confusion, his pulmonologist says everything looks fine on their end and believes the issues are indeed related to the CLL.

We are currently waiting on bone biopsy results, and he’s heading in tomorrow for tumor marker blood work. I’ve also requested a PET/CT scan and am waiting for an appointment, plus I plan to take him to a private neurosurgeon for a second opinion. Lately, he’s been developing skin blotches that itch occasionally before fading after a few days, and I’ve noticed he bruises quite easily—I’m not sure if that’s a significant detail to mention.

Is there anything else I should provide? Perhaps I should post the text from the MRI report? It feels surreal that two different departments are essentially arguing over who is responsible for his care. Time is slipping away, and it's hard to see him like this; he's stuck in bed relying on meds just to get through the day, but that isn't a long-term solution.

If anyone has any advice, questions, or insights, please let me know. THANK YOU div>