Jen from California - Dx 2009

[jenhy168]

Thx all

Yes i'm still on anlotinib. Still trying to see if i can get cabozatinib. Insurance already denied it twice.

Your advice is obviously wise - i will need to consult the doctors specifically because treatment risks / pros / cons depend on location and size of met.

Anyone have experience of faster "spreading" or increased progression after SBRT radiation to met? That's what i'm concerned with. I've had SBRT once to lung met in right lower lobe but that was about 5 years ago or so. Right lower lobe has been collapsed for the past couple years.

I don't want SBRT to "agitate" the muscle met and cause it to spread to the spine....
When I've asked the radonc about that, she said that wouldn't happen...but i don't think anything is impossible when it comes to this disease...

~ jen

[arojussi]

Radiation can make tumors swell, so they initially appear bigger. This happened to me 2 moths after my first round of stereotactic radiation for brain tumors. After that tumors shank.

[arojussi]

Most interestingly my heart tumor still appears bigger after starting immunotherapy, but my heart is able to pump easier. swelling caused by treatment most likely cant invade surrounding tissue like cancer growth. Of course growth can simply mean that radiation failed. Often only way to make sure is scan again after moth or 2. Make sure with your doctor before treatment.

[D.ap]

Jen
What was /is it progression ? From the beginnings of trial?
Scan compared from beginning to now?

[Olga]

Jen, we did not have any cases when SBRT caused the progression/increased speed of growth. If properly done and the location allows for the safety margins, it is a very effective treatment for the small ASPS tumors.

[jenhy168]

I see thank you.

I consulted with an orthopedic oncology surgeon, and he said he could do it but he wants to consult with the radiation onc and my primary oncologist all together in one room to discuss what's the best mode of treatment. He doesn't want to subject me to a surgery if not necessary....considering that surgery requires recovery time and SBRT has no recovery time. He will discuss my case with the other doctors on thurs, and get back to me on Fri with what's the "best" treatment option for this back para spinal met.

Olga - the reason I asked about progression after radiation was I thought I read somewhere on this forum where someone got radiation and then it caused the disease to go "crazy" and spread.....was it brittanys case? i can't remember I get it all confused...

[D.ap]

Jen, we did not have any cases when SBRT caused the progression/increased speed of growth. If properly done and the location allows for the safety margins, it is a very effective treatment for the small ASPS tumors.

Jen I agree with Olga’s statement :)
Your onc understsands ASPS? It being radio resistant ?
Your surgeon is moving in the right direction consulting all involved . Your onc and interventional radiologist.(IR)
Your IR is experienced with RFA? Technique of procedure ( not seeding AND most importantly getting clear margins without collateral organ and or spinal damage.

Those are the most important questions to ask . Along with
how many procedures ,and with success .

[arojussi]

Once again either Debbie or myself confuses the meaning of margins. (Positive margins mean, that there is tumor cells left and all cancer was not removed. Negative margins mean, that all cancer was removed and there is no tumor tissue left. Negative margins can be called clean or clear margins. If margins are thin, it can be called close margins.) Google or doctor can explain this with more detail.

[D.ap]

Thank you Jussi
I stand corrected . : )
I corrected the description above from positive to clear margins .

[jenhy168]

Yes my main onc definitely understands ASPS...and that asps is radio resistant...but SBRT is a different and much much stronger mode of treatment.

Saw my onc today and it seems like we may be leaning towards doing surgery for the paraspinal met. We will continue anlotinib for one more cycle (2 weeks on drug, 1 week off), then do repeat CT abdomen / chest scan in late November. (My previous CT scans were on 9/26 - so this repeat scan will be 2 months from the last one).

After that last scan we will see how I'm doing to definitively decide it's the best move to stop Anlotinib, and do surgery or SBRT, then start Cabozatinib. I was able to get cabozatinib via the "ease" program -pretty much like compassionate use.
.
.

What are good questions to ask the ortho onc surgeon if I do proceed to go that route to resect the para spinal met?
- recovery time, clear margins, how many procedures have you had that were of similar case?

[Olga]

The main question to ask if there is going to be any bone resection in order to achieve the clear margins - i.e. a permanent damage. And I would strongly suggest to look for the immunotherapy trial that accepts the patients with the previous exposure to ICI drugs or apply for Keytuda off label plus perform the SBRT to some met in order to trigger the immune recognition. The sarcoma oncologist from Toronto Dr.Razak told us that he had a much better than reported response in ASPS patients with ICI drugs because he used SBRT in all cases to potentiate/activate it.

[D.ap]

Jen
A couple of articles to present to onc team
Olga’s suggestion is an excellent one .

“Combination of immune checkpoint inhibitors and radiotherapy: Review of the literature.“

https://www.ncbi.nlm.nih.gov/m/pubmed/28427523/

“Radiotherapy combined with immune checkpoint blockade immunotherapy: Achievements and challenges”

https://www.sciencedirect.com/science/a ... 3515003407

[jenhy168]

Doctors consensus is that they think it's better for me to do SBRT...even tho they can do either SBRT or surgery resection of the paraspinal back muscle met. SBRT radiation is obviously no recovery time and easier.

However I feel like with surgery, I'll know that it's completely gone and resected (even though there are more surgical related risks involved)...whereas with SBRT, there is a tiny chance that it won't work or may not kill it completely 100%.
So I'm still leaning towards getting surgical resection done.

So even tho they said SBRT may be better for me since it's easier and no recovery time, Ortho surgeon and SBRT radonc doc both say they CAN and are willing to treat it. So now it's kind of up to me what I prefer since they are letting me have the option to do what I prefer...

Thoughts?

[D.ap]

The main question to ask if there is going to be any bone resection in order to achieve the clear margins - i.e. a permanent damage. And I would strongly suggest to look for the immunotherapy trial that accepts the patients with the previous exposure to ICI drugs or apply for Keytuda off label plus perform the SBRT to some met in order to trigger the immune recognition. The sarcoma oncologist from Toronto Dr.Razak told us that he had a much better than reported response in ASPS patients with ICI drugs because he used SBRT in all cases to potentiate/activate it.

Bone involvement Jen? If surgery were to be involved ?
Seeding into bone with the surgical procedure ?

[jenhy168]

No bone involvement for surgery...I think.

I would need to confirm that with the surgeon....