Cass. Beginning of my journey

[Cass_OK]

Hi Olga,

Thank you for well wishes.
I just completed egg preservation procedure. I was very concerned about the use on fentanyl and antibiotics (cefazolin) , but doctor reassured me that the type that they used should be flushed out of the body in 24h. I hope it's true.

My immunotherapy starts on March 31st.

Good family friend highly recommends to get a second opinion at Mayo clinic. It's very costly. Do you think it's worth it?

Thank you,

Cass

[Olga]

In my opinion you are getting the best treatment possible that is available at the moment, this is the treatment we fought for based on the available evidence so far, and is supported by all the big places in US as well. If you want you can get the free second opinion from Dr. Razak, he is the lead for Medical Oncology in The Princess Margaret/MSH's Sarcoma Site Group and our oncologists can refer you for the second opinion, but as far as I know he does the same.
Keytruda is the cutting edge treatment. The fact they agree to pay for giving it to ASPS patients is remarkable as technically they did not have to.
There might be some difference in opinions what to do with the primary and if it makes sense to add a radiosurgery to separate metastases to improve the recognition by the immune system. But for the start, immunotherapy is good.

[D.ap]

Hello Cass
Great news on moving forward with treatment.
Dr. Razak was one of the doctors to oversee the MED14736 plus trememulamab trial which had 3 ? Alveolar soft part sarcoma patients back in the mid 2015-?

Here’s the link to the trial


https://cureasps.org/forum/viewtopic.php?p=10748#p10748
I believe MED14736 is now durvalumab.
Mario has been on durvalumab, at Md Anderson in USA , Texas.

https://cureasps.org/forum/viewtopic.ph ... mab#p11509

[Naynay]

Hi Cass,
I'm sorry for your diagnosis. My heart truly goes out to you. I signed in, just to chime in re this question of yours:

"Good family friend highly recommends to get a second opinion at Mayo clinic. It's very costly. Do you think it's worth it?"

I'm not sure if your doctor has mentioned this, but BCCA in Vancouver is basically the sarcoma 'hub' of Canada. Honestly, you're probably in the best spot you could be in right now, with the best doctors. There are at least a couple doctors out of BCCA who have seen ASPS before, which is definitely an advantage right out the gate, considering how rare it is. Trust your doc for the time being, see how treatment goes and what your scans reveal next time you go in for them. If a time arises where you're not feeling confident in the direction of your treatment, seeking out a second opinion is never a bad idea.

I hope that gives you some reassurance. All the best to you, I hope your first infusion goes well.

[Cass_OK]

Hi Olga, Debbie, Naynay!

I really appreciate you support and advices. I agree with you and I think it's best to wait for 3 month until next CT Scan.

Thank you,

Cass

[Cass_OK]

Here is the PET scan report (15/02/22):


Low-grade FDG uptake (SUVmax 3.2) is seen within a 1.8 x 1.2 cm lytic lesion anteriorly in the right frontal bone breaching the outer table with a subcutaneous soft tissue component. Mild activity is associated a small lytic lesion in the right eighth rib posteriorly and lytic lesions in the right pedicie region of L1 and in the left side of the L4 vertebral body. No other FDG avid or destructive bane lesions identified. Bone marrow activity appears physiologic.

IMPRESSION:

The known alveolar soft part sarcoma in the right iliac fossa demonstrates inhomogeneous moderately intense FDG uptake.

Low-grade FDG avid lytic bone metastases involving the right frontal bone, right eighth rib and the L1 and L4 vertebral bodies. An 11 mm intensely FDG avid nodular density in the left suprapatellar pouch region may reflect a focal inflammatory lesion, pigmented villonodular synovitis or less likely a metastasis. It warranted this could be further characterized with MRI *****

[Cass_OK]

Magnetic Resonance Imaging

Report

abnormality within the cervical spine.

Small disc osteophyte complex at CB-C7 without significant central spinal canal narrowing. No neural foraminal stenosis Within the superior endplate of T5, there is a 1.2 x 0.5 cm hyperintense T2/T1 lesion demonstrating some internal

Thoracic spine:

enhancement demonstrated. This corresponds with a rim sclerotic focus demonstrated on CT in December 2021. Differential for this would include degenerative endplate change Schmort's node versus metastases. A tiny hyperintense T1/T2 focus within the T6 vertebral body consistent with an hemangioma. No further definite ar concerning bone marrow signal abnormality present within the thoracic spine.

Spinal cord signal appears normal. No central spinal canal narrowing. No neural foraminal stenosis.

Lumbar spine:

Alignment of the lumbar spine is maintained. Vertebral body heights are maintained. There is a isointense T2/T1 lesion demonstrated within the right pedicle and tamina of L1 measuring 2.6 x 1.9 cm (32.8). This is similar in size to the prior study in December 2021. There is slight extension into the right paravertebral soft tissues and abuts the medial aspect of the right hemidiaphragm. There is slight extension inferiorly significantly displace the exiting right L1 nerve root. A similar lesion is demonstrated within the posterior left aspect of the L4 vertebral body extending into the anterior aspect of the the left pedicle measuring 1.7 x 1.5 x 2.0 cm. Again this is similar in size to the prior study in December 2021.

A 0.7 cm lesion is demonstrated within the S1 vertebral body which demonstrates central hypointense T1/T2 signal with a hyperintense T1/T2 rim again appearing similar to December 2021. Similar to this, there are lesions present within the L3 vertebral body measuring up to 0.8 cm (12:6 and measuring 1.0 cm (12:11).

Cord signal appears normal. Conus terminates at the level of L1 on sagittal sequences. No significant central spinal canal narrowing or neural foraminal stenosis

There is an incompletely visualized enhancing mass present within the soft tissues located within the soft tissues between the anterior aspect of the right iliac bone and the right psoas muscio measuring 68 x 4.8 cm (32-32 and componding with the mass demonstrated on CT in January 2022

IMPRESSION

1. Right frontal FNA proven bony metastases appears to demonstrates some interval increase in size from CT in January 2022. While difficult to assess on MRI, this appears to extend through the inner table of the skull abutting the dura without significant mass effect.

2. Abnormal lesions as outlined above within T5, L1, L3, L4 and S1, while indeterminate, are most concerning for metastass significant in the current clinical setting. While the differential for lesions within the L1-L4 vertebrae with contain osteoblastoma or fibrous dtsplasia, in this clinical setting, again these most likely represent metastasis. These could be rediscussed at sarcoma tumor board rounds

3. Incompletely imaged soft tissue mass within the right hempelvis located between the right llac bone and psoas muscle consistent with known sarcoma

[Cass_OK]

Update after 3 month on Keytruda:

The FDG avid tumor in the right iliac fossa has significantly improved with decreased size and density. It is challenging to
definitely delineated this mass now as it is isodense to the underlying muscle, together measuring 2.0 x 3.2 cm on the axial
plane (6:210-221), previously 4.3 x 6.4 cm. No underlying iliac bone erosion.
A small rim enhancing lesion in the right adnexa is probably corpus luteal cyst. Other organs remain unremarkable.
Minimal free fluid is probably physiological in nature. No adenopathy.
Previously described mixed and lytic bone metastases in the right eighth posterior rib, L1 and L4 vertebral bodies demonstrate
increased sclerosis and improved border definition, in keeping with healing. No new concerning bone lesion. No fracture. No
soft tissue component. No central canal stenosis.
*****
IMPRESSION:
1. Improved bone metastasis (including right frontal calvarium, ribs and the L-spine vertebra).
2. Marked improvement of the right iliac fossa mass.
3. No new metastasis.
***** Final
Dictated DT/TM: 28-JUL-2022

[D.ap]

Holy moly Cass,
The results are amazing!
So you’ve been on Keytruda since late March ?

[Cass_OK]

Thank you!) I'm very happy as well.
Yes, I've been on Keytruda since March 31.

[Olga]

Amazing result, hoping for more the same for you!