Tag: PET Scan

L5 Compression Fracture

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Starting some weeks back, I was experiencing lower back pain.   It wasn’t getting better. It was getting worse!  I report anything out of the ordinary to the research team (I’m in a phase I clinical trial), and had been doing so with regard to this ailment.

Since the pain was only getting worse over time, my doctor decided to order a PET scan so he could tell if there was some myeloma blowing up in there.  I had that PET scan a little more than a week ago, and it was determined that there was a compression fracture at L5.  As far as I know, I’ve never had a vertebral fracture before this.

I saw someone from neurology as a next step, and I decided I would take their advice and have kyphoplasty.  That’s scheduled for Tuesday, the 26th.  I’m really happy to be having that done, because it’s said that the majority of people in my situation get pain relief almost right away.

In the last several years, I’ve broken my shoulder, a rib, and now this.  If I had to rank them in terms of which one hurt the most, I don’t think I could. Each one had its own unique brand of horribleness.  The L5, though, affects just about everything I do, from walking to standing and sitting. It’ll be a relief to get the kyphoplasty done.

The procedure will be done in the Interventional Radiology Department so the doctor can watch his progress using fluoroscopy.

I’ll let you know how it goes.

 

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Cycle 4 of talquetamab and daratumumab

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I’m in cycle 4 now.   I still go every week for treatment, but here’s something to look forward to:  At the end of cycle 6, I’ll have a PET scan.  If everything looks good on the PET scan, my treatment schedule will change to every other week.

My Pomalyst dose has been decreased to 2 mg/day.  It’s been noticeably easier to tolerate than 3mg.

I am getting daratumumab every other week now.  I’m still getting talquetamab every week.

 

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I’m out of the TNB-383B trial

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Things have taken an unexpected turn.  While my blood tests looked pretty good, my PET scan results were disappointing. The PET scan showed that I’m not okay, and I am no longer eligible for the trial because of disease progression.

Here’s what the report said:

MUSCULOSKELETAL: Multiple hypermetabolic osseous lesions in the appendicular skeleton, including the right proximal humerus, left distal humerus, and bilateral femurs. Index right proximal humerus lesion SUV max 2.11 (image 114).

Multiple hypermetabolic osseous lesions in the axial skeleton, most significant in the right eccentric L1 vertebral body, SUV max 8.37 (image 184). Index proximal left sacral lesion SUV max 6.40 (image 243). Index distal left sacral lesion SUV max 4.89 (image 255). Index lesion in the left iliac bone adjacent to the SI joints, SUV max 2.42 compared to 1.9 previously (image 232).

On Tuesday, I had another bone marrow biopsy. On Wednesday, I saw the PET scan with my own eyes. It was a bit horrifying to me. I have never, in my 18 years with myeloma, had bone issues.  Suddenly, there it is.  “Worsened diffuse metastatic disease in the axial and appendicular skeleton in the setting of multiple myeloma as detailed above.”

I have a few FDA approved drugs I can try, and I have some more trials I could try.  There’s one drug called selinexor that I’m passing on.  My doctor says it takes a lot of meds to control the nausea associated with it.  I would simply do almost anything to avoid nausea. The other FDA drug I haven’t tried yet is something called BLENREP.  Here’s what caught my attention immediately: “BLENREP can cause changes to the surface of your eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss, and corneal ulcer. Tell your healthcare provider if you have any vision changes or eye problems during treatment with BLENREP.”

I am considering enrolling in another trial.  I’ll get more details on that soon.

 

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Duke Lemur Center / Bone Marrow Transplant Clinic today

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Duke Lemur CenterMonica and I got to go to the Duke Lemur Center in Durham, NC today for business.  It was great!  I took some pictures through the fences with my iPhone camera, and this was the best of them. I’m afraid I can’t tell you what type of lemur this is, but I’ll find out.

Just before the meeting at the Lemur Center, I had a checkup at the Bone Marrow Transplant Clinic.  I’ll have the results of my tests on Wednesday.   It’s been almost two years since I had a skeletal survey, so I scheduled that for September.  The skeletal survey is a series of xrays of the long bones, skull and ribs and spine. I asked about a recent report I read that suggests that PET scans should be used for monitoring myeloma.  My doctor does those if there’s activity such as an increasing m-spike and nothing shows up on xrays.  The PET can show plasmacytomas and other activity.

I’ve been told that standard radiographs aren’t much good at detecting bone damage until there’s been a significant amount of destruction, so it’s not a good early warning indicator. I’d like to have a PET scan just to see what’s lurking.  I know they’re expensive.  A few years ago I called around to get the costs at various places  because I wanted one, but was told by my insurance company that they weren’t covered for myeloma. At the time, the cheapest PET scan I could find was about $3,000.

Did you know you can do that?  If you’re not insured, or your coverage isn’t very good, call around to see who has the best deals on tests or procedures.  The costs can vary quite significantly between institutions.  Another money-saving tactic is to find out what’s covered under what setting.  For example, my insurance has me pay 20% of services performed in hospitals.  That’s why I have most of my chemo and all of my Zometa infused at a nearby doctor’s office.  When I do that, it’s just a $30 copay. Investigate all of your options!

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