As you’ve probably guessed by now, Dr. Tricot is a man of few words. Not known to use superlatives, a comment like, “I’m pleased with your results,” jumps out at you. But before everyone gets too excited, I need to add an asterisk. Turns out things are complicated.
I met with Dr. Tricot for an hour yesterday. He agreed with my take on Tuesday’s test results. The transplant worked. Most of the myeloma is gone. What’s left is isolated in three or four larger lesions, measurably smaller and less active.
This week’s bone marrow biopsy (BMB) revealed more good news: my bone marrow continues to be myeloma free. I asked if my transplant results would be categorized as a very good partial response (VGPR). “Yes,” he said.
It’s easy to understand why his patients are so enthusiastic and loyal to him; they fly in to the smallish Cedar Rapids airport from all over the country to see him. Pattie had asked that I record our conversation. It only took six minutes for Dr. Tricot to begin making his case for me to transplant again next month.
But I’m getting ahead of myself. I’m going to spend a lot of time breaking down my test results and unexpected prognosis. Why? According to Dr. Tricot, “This is an unusual case. Out of 5,000 patients, I’ve only had one or two with myeloma like yours.”
Lucky me? My first thought was, “The man has treated a lot of myeloma patients over the years!” Considering that treating late stage myeloma patients is more art than science, that’s invaluable experience.
But one in 5,000? Is that good or bad? Now do you believe me when I say my case is complicated?
Unconventional or not, I think there’s much we all can learn from the ever changing twists and turns of my myeloma journey. Time to hit rewind and start at the beginning. For reference, here are summaries of Tuesday’s PET scan and brain MRI:
PET / CT F-18 FDG TUMOR SKULL BASE TO MID-THIGH
Indication: Therapy planning for 59 years old Male with multiple
Radiopharmaceutical and other administered agents:
1. F-18 Fluorodeoxyglucose (FDG) 9.69 mCi IV given in left antecubital
fossa at 1035 hrs.
2. Total of 500 mL of dilute oral contrast was administered.
Technique: Study was performed in fasting state; patient’s baseline
blood glucose was 106 mg/dl. Images from skull vertex to distal thighs
were acquired on a Siemens Biograph PET-CT with PET imaging in 3-D
mode. CT was performed for attenuation correction and anatomic
correlation. Reconstructed PET, CT, and fused PET-CT images were
reviewed on computer monitor in coronal, sagittal, and transverse
planes. FDG uptake period was 81 min.
Comparison: PET/CT on 6/22/2015 and 2/27/2015.
1. Bone marrow: Relatively homogeneous distribution of activity;
average SUV of 1.8 (1.5 previously) is seen at representative marrow
2. FDG avid skeletal lesions: Mild uptake in lytic lesions of the
bilateral iliac wings (SUVmax 2.9) and right inferior pubic ramus
(SUVmax 2.7), significantly improved from prior exam. Interval
improvement of hypermetabolic lesion in the occipital bone with
intracranial extension (SUVmax 5.2 versus 9.0 previously).
3. Non-FDG avid skeletal lesions: Multiple lytic defects, which are
most prominent in the calvarium (the largest lesion in occipital
bone), right scapula, right ribs (7th, 9th, and 10th), vertebrae (T1,
T5, T9, and L3-5), stable T12 severe compression deformities, sacrum,
and bilateral iliac bones.
4. Extramedullary lesions: Interval resolution of hypermetabolic left
external iliac lymph node. No other sites of extra medullary
hypermetabolic disease are identified.
1. Head & neck: Grossly stable mildly asymmetric uptake in the
right frontal parenchyma without underlying lesion on MRI; this is a
normal variant. Multiple skull sebaceous cysts with no significant
uptake redemonstrated. No evidence of lymphadenopathy or paranasal
sinus disease. Thyroid is unremarkable.
2. Chest: Lungs show stable subcentimeter nodules in right lung,
which are too small for PET characterization; no significant pulmonary
nodules or hypermetabolic abnormalities; mediastinum, axillae, and
chest wall are unremarkable. Coronary atherosclerotic calcifications
3. Abdomen & pelvis: Normal uptake in liver, spleen, adrenals,
urinary system, and bowel; no hypermetabolic adenopathy.
4. Visualized extremities: Stable right hip prosthesis.
1. Interval reduction in FDG uptake within skeletal lesions in the
bilateral iliac wings, right inferior pubic ramus, and occipital bone.
The intracranial extension of the occipital bone lesion is better
evaluated on MRI from today.
2. Interval resolution of the previously seen FDG avid left external
3. Grossly stable nonFDG avid lytic lesions as described above.
MRI BRAIN W/WO CONTRAST
Indication: Island is involvement of the calvarium. Please compare to
Technique: Multisequence, multiplanar MRI of the brain before and
after the uneventful administration of 6.7 mL Gadavist IV contrast.
Again seen are multiple mass lesions in the calvarium which are
relatively stable when compared to prior exam. Again seen is an
extra-axial extension into the left posterior fossa which is decreased
when compared to prior exam. Remainder of osseous and soft tissue
lesions are stable when compared to prior exam. There is no acute
infarct or intra or extra-axial hemorrhage. The ventricles, cortical
sulci and basal cisterns are symmetric and appropriate in size. Normal
brainstem and posterior fossa. The pituitary and suprasellar region
are unremarkable. The major intracranial flow-voids are preserved.
Normal orbits, paranasal sinuses and mastoid air cells. Normal bone
marrow signal. No suspicious lesions or areas of abnormal enhancement.
1. Intra-axial extension into the left posterior fossa by left
occipital mass has decreased size when compared to prior exam.
2. Multiple myelomatous lesions involving the calvarium as well as
soft tissues are relatively stable prior exam.
I understand it may be hard to follow. But even without a medical degree, you can see the transplant had an impact. Improved or not, it is worrisome that the large occipital lesion at the base of my skull still lights up. That’s the wild card. It couldn’t be in a more difficult to treat and threatening spot.
But that’s only one of several complications. Tomorrow I’ll explain what makes my case so unusual–and what complicates things moving forward.
For now, I’m ecstatic! The good thing about being different: one can hope for a different result. If my myeloma is so unusual, maybe we can coax it into submission, and I can live an unusually long time! Now that’s would be something to celebrate!
Feel good and keep smiling! Pat