Jen from California - Dx 2009

[jenhy168]

Gotcha...needs to be painful ;)

So I guess the glute met is not as concerning due to location? I should be more concerned about the paraspinous musculature posterior to the left T8 transverse process (2-56)...

[jenhy168]

There is may be a reason to treat the spinal one - that shows an Increased enhancement - could it possible invade the space between the vertebrae bones? How far is it located from the vertebrae? We have a pretty unfortunate community experience with that.
As I said they would (probably) allow to treat only the painful mets - so it needs to be painful:) get the hint.
But consult the trial conditions, it is usually shown in the trial descr. on the trials web-page.

Hi Olga - regarding muscle met near spine... How close is considered CLOSE? 1mm? 5mm? 1cm?

Got results back for 3 month CT chest & abdomen pelvis w/contrast follow up...I'm concerned about the met near spine that increased by 2mm -
Per CT report: "Slight increase in size of the enhancing/high density nodule in the left paraspinous musculature posterior to the left T8 transverse process currently measuring 10 mm (2-57), previously 8 mm (2-56). "

I consulted the radonc recently and she said it's not close...she measured it on the computer for me...i THINK if my memory serves me correctly - she said it was less than a cm away from the spine....but I will double check. Meeting with my regular Oncologist tomorrow to discuss these results and whether I can and should SBRT radiate the near spine met.

I also have a glute muscle met...that's growing slightly....Onc said last time it's not in a concerning location. So if it's growing but not in a concerning location, should i still try to zap it? It wouldn't really make much of a difference (tumor burden wise) if I did SBRT it since i have like 100 nodules in my lungs anyway.

Below is my CT Scan results....

Thanks guys appreciate your input.

-----
CT SCAN - chest/abdomen/pelvis w/contrast


FINDINGS:

ONCOLOGIC FINDINGS:
History of metastatic sarcoma with:

Grossly stable diffuse, greater than 50, enhancing pulmonary metastases.

Stable trace bilateral pleural effusions.

Stable right intrapulmonary/hilar lymph nodes with slight increased when compared to baseline (2-46).
Stable to slight decrease in size of the left hilar lymph nodes (2-46).
Grossly stable multiple AP window, paratracheal, and right pericardiophrenic lymph nodes are stable.

Grossly stable irregular soft tissue attenuation at the peripheral aspect of a liver ablation exam.

Slight increase in size of the enhancing/high density nodule in the left paraspinous musculature posterior to the left T8 transverse process currently measuring 10 mm (2-57), previously 8 mm (2-56).

Grossly stable high density/enhancing lesion in the left peri-iliac gluteus musculature (8-91).

Slight increase in size of a high density/enhancing nodule within the subcutaneous fat overlying the gluteus musculature currently measuring 5 mm (8-146), previously 4 mm (7-84), and previously 2 mm (8-83) on 12/1/2017.
Slight increase in size of a subcentimeter nodule within the subcutaneous fat overlying the right gluteus musculature (8-143) that is nonspecific.

Slight increased sclerosis of a small lucent lesion within the right posterior fourth rib (2-23).

[D.ap]

Hello Jen : )

Were you tested by the way of your primary of the EGFR mutation ?
And if so what were the results ?

[Olga]

Jen, are you still on anlotinib? The SBRT treatments are pretty good if you are on ICI drugs as the means to cause the abscopal effect but with the TKI drugs there are precautions that needs to be taken. Besides it looks like there is some small progression already happening on this drug, so you might need to move to ICI treatment or trial.
I am not sure how close is to close, may be Bonni can tell how close was the met that invaded the spine in Brittany case.

[Bonni Hess]

Dear Jen and Olga, Based on our experience with Brittany's spinal met, I think that ANYwhere in the back is too close for an ASPS met!! Had Brittany's spinal muscle met been reported and treated when it first became visible, it would not have progressed to the point that it was threatening spinal cord invasion and potential paralysis or death thus necessitating an emergency Life threatening morbid laminectomy. The spinal met spread and grew VERY rapidly, and should have been surgically removed or otherwise treated immediately. I strongly urge that resection or other treatment of any ASPS spinal mets be explored and pursued as soon as possible. The Wait and watch approach is NOT advisable!! With special caring concern and continued Hope, Bonni

[jenhy168]

Hello Jen : )

Were you tested by the way of your primary of the EGFR mutation ?
And if so what were the results ?

i don't know....they've tested something with the primary a couple years back...but don't remember what....

=/

[jenhy168]

Jen, are you still on anlotinib? The SBRT treatments are pretty good if you are on ICI drugs as the means to cause the abscopal effect but with the TKI drugs there are precautions that needs to be taken. Besides it looks like there is some small progression already happening on this drug, so you might need to move to ICI treatment or trial.
I am not sure how close is to close, may be Bonni can tell how close was the met that invaded the spine in Brittany case.

Hi Olga - yes i'm still currently on the clinical trial Anlotinib...

I've just tried so many of the other drugs that this is the best option out there for me....onco wants to keep me on it even though there's some small progression...

[jenhy168]

Dear Jen and Olga, Based on our experience with Brittany's spinal met, I think that ANYwhere in the back is too close for an ASPS met!! Had Brittany's spinal muscle met been reported and treated when it first became visible, it would not have progressed to the point that it was threatening spinal cord invasion and potential paralysis or death thus necessitating an emergency Life threatening morbid laminectomy. The spinal met spread and grew VERY rapidly, and should have been surgically removed or otherwise treated immediately. I strongly urge that resection or other treatment of any ASPS spinal mets be explored and pursued as soon as possible. The Wait and watch approach is NOT advisable!! With special caring concern and continued Hope, Bonni

Hi Bonni~
I hear what you are saying totally. When you guys first found the spinal muscle met, had it already progressed into the spine already? Or was it still just in the muscle?

Thank you, Jen

[Bonni Hess]

Hello again dear Jen, We had no idea that Brittany had a spinal met until she became symptomatic with cervical/thoracic back pain for which we immediately requested a spinal MRI. Heartbreakingly the MRI showed a large spinal met which had inexcusably been unreported by the negligent radiologist in TWO previous scan reports during a six month time period, even though it was clearly visible when we reviewed the previous chest CT scans. It had grown from a relatively small easily resectable para spinal lesion in the soft tissue of Brittany's upper back, to a large tumor adjacent to and invading Brittany's cervical thoracic spinal cord. THERE IS NO VALID REASON TO POSTPONE SURGICAL REMOVAL OR RADIOSURGERY IF IT IS POSSIBLE!! ASPS spinal mets grow and spread very rapidly and are radiation resistant as we learned the hard way with our dear Brittany. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Jen I echo Bonnis suggestion of certainly taking care of the spinal met.
And also Olga’s observation of possible rebound happening ?
There are a multitude of immune therapy choices to move to from your EGFR Med .
I realize you’ve tried Opdivo but there are more out there .

[jenhy168]

Jen I echo Bonnis suggestion of certainly taking care of the spinal met.
And also Olga’s observation of possible rebound happening ?
There are a multitude of immune therapy choices to move to from your EGFR Med .
I realize you’ve tried Opdivo but there are more out there .

What does "ICI" refer to or mean?

So since anlotinib is a TKI - are you saying it's not good to get SBRT radiation WHILE on a TKI...because it may possibly cause an increase in growth?

[jenhy168]

Hello again dear Jen, We had no idea that Brittany had a spinal met until she became symptomatic with cervical/thoracic back pain for which we immediately requested a spinal MRI. Heartbreakingly the MRI showed a large spinal met which had inexcusably been unreported by the negligent radiologist in TWO previous scan reports during a six month time period, even though it was clearly visible when we reviewed the previous chest CT scans. It had grown from a relatively small easily resectable para spinal lesion in the soft tissue of Brittany's upper back, to a large tumor adjacent to and invading Brittany's cervical thoracic spinal cord. THERE IS NO VALID REASON TO POSTPONE SURGICAL REMOVAL OR RADIOSURGERY IF IT IS POSSIBLE!! ASPS spinal mets grow and spread very rapidly and are radiation resistant as we learned the hard way with our dear Brittany. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

Thanks Bonni~
What is best for a paraspinal lesion that is 10mm? Surgical resection? SBRT radiation? Ablation?

[Bonni Hess]

I personally feel that surgical resection of the paraspinal met is the best treatment option if it can be successfully completely removed. Post-op high dose Photon radiation was a complete failure for Brittany's residual spinal tumor tissue and it seemed to just cause her tumor to aggressively grow and spread along her spinal cord. I am not personally familiar with SBRT or Ablation for spinal tumors, but our treatment approach has always been to surgically remove any tumors if it is possible, and if resection is not possible, we then pursue ablation or radiosurgery. Radiation is not a viable treatment option for notoriously radiation resistant ASPS. I Hope that you will be able to have your paraspinal met successfully completely resected or otherwise destroyed as soon as possible before it grows any larger. With deepest caring, healing wishes, and continued Hope, Bonni

[jenhy168]

I'm not sure what Post-op high dose proton radiation entails, but SBRT is usually a 1 day treatment since it's super strong radiation.

How many treatments were Brittany's high dose proton radiation? Over a couple weeks?

My onco just said that i have to discontinue and stop Anlotinib clinical trial if I pursue SBRT treatment or any other surgical treatment of this para spinal met. And I will not be able to continue the drug and trial after.

[D.ap]

Morning Jen
You’ve been on Anlotinib sense December and had some shrinkage in Feb but now are seeing some increase ?
What does your onc have to say of this happening ?
And more imporrantly , what are the trial docs saying ?
The trial has other ASPS patients as well( my understanding ) so there should be some type of possible consenses ..

No new tumors and stability are good reports however the tumor near the spine is truly concerning .
Have you had a molecular profile performed on your primary ?