Jen from California - Dx 2009

[Bonni Hess]

Hello again dear Jen, Brittany was receiving her spinal high dose radiation treatment over a period of a couple of weeks (I don't remember if it was daily or several times a week since it has now been 10 years qgo), but the radiation treatment was immediately stopped when it was found that her spinal tumor was rapidly and aggressively growing and spreading along her spinal cord necessitating an emergency major spinal surgery. I understand the concern about you having to discontinue your Anlotinib Clinical Trial treatment for spinal tumor resection or SBRT, but based on our experience with ASPS spinal mets, I think that the greater concern should be the possible aggressive growth of an unresected/untreated spinal tumor, especially if the spinal mer has continued to grow despite your Anlotinib treatment as concerningly seems to be the case. It is a difficult decision, and one which needs to be weighed carefully. With caring concern 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 .

What does "ICI" refer to or mean?-immune check point inhibitor —

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?

no I was meaning that you appear to be having progression on Anlotinib.
Maybe at the very least in your muscle area near your spine
Jen you have a history of being dx’d , surgeries Med use TKIs ICI TKIs, that should begin to give a timeline to your oncologist for what you could , should benefit from possibly?

Pazopanib gave you the best results?
Longest PFS?
If you could have surgery on the muscle met , it in itself would give a history of
1 whether it’s ASPS
2 and what mutations might have evolved and or be affected by the TKIs you’ve used over your ASPS history since your dx’d. Maybe it’s a gene mutation different ?
You are of Asian persuion ..
Genes are very much a part of EGFR predictions? Med sensitivity ?
I maybe off track but I sure want you to recieve the best care , as I truly feel your team does .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070854/


IMHO you need to move on from anlotinib unless your team can give you a damn good reason to stay on it.
Sorry for the semi vanacular :/

[D.ap]

The observation that the mutations are found more often in individuals who have never smoked excludes the involvement of carcinogens in tobacco smoke. The mutations are more prevalent in East Asian populations (30%~50%), but are relatively rare in individuals of European and African descent (<20%) (1-3).

[jenhy168]

Has anyone tried cabozantinib? I think this might be similar to pazopanib...

My onco suggested cabozantinib IF I do decide to stop anlotninb and treat the muscle met near spine.

[D.ap]

Jen
Truly glad you all are exploring options !:)

https://www.cureasps.org/update-on-alve ... 8-11-2017/

What is biggest lung met ?
Has radiologist seen any mets disappear ( lung or otherwise) over the course of your TKI and or Opdivo use ?

[arojussi]

Find out, what specialist, who is going to treat soft tissue met thinks is too close to a spine to treat. Looks like sooner or later you will unfortunately have to deal with this met, so I wouldnt risk it becoming too big or too close to a spine. Asps usually grows slowly, but if this met suddenly starts growing faster you will soon run out of time to treat this met.

[jenhy168]

Jen
Truly glad you all are exploring options !:)

https://www.cureasps.org/update-on-alve ... 8-11-2017/

What is biggest lung met ?
Has radiologist seen any mets disappear ( lung or otherwise) over the course of your TKI and or Opdivo use ?

I honestly don't know the answers to those 2 questions...
I think that when the radiologist reads the Chest CT, there's too many for them to count to see if any mets disappear. I assume it's either relatively the same unless otherwise mentioned....

[jenhy168]

Find out, what specialist, who is going to treat soft tissue met thinks is too close to a spine to treat. Looks like sooner or later you will unfortunately have to deal with this met, so I wouldnt risk it becoming too big or too close to a spine. Asps usually grows slowly, but if this met suddenly starts growing faster you will soon run out of time to treat this met.

Both my radiation oncologist and main oncologist both think that I should stay on the trial one more cycle (3 mos) to see what happens next...They both think it's "not close" to the spinal cord.

I'm still up in the air what to do because I'm not sure if I can get access to cabozatinib or not...Waiting to hear back from my onco if I can get the drug or not. For the time being i'm just taking the trial drug.

[D.ap]

Hello Jen
I’d hope that a good radiologist could take the time to look at your past chest CTs to see if maybe some of your multiple tumors have resolved? It’s an important evaluation to say what’s working and what is not in your most inundated with tumors, organ the lung .

The doctor needs to let you know how the radiologist is reporting and quite frankly he or she should ask this to be reported . One way or another .
Yearly , and or during each of the trials and or meds you try.
If that makes sense ?

I know it’s a long shot but maybe , just maybe having a systemic Med that is showing promise in your lungs could aid you in lung laser surgery in the immediate future after getting your tumor near yours spine treated and under control ?

[arojussi]

I am sorry if you already tried ctla4-inhibitors like Yervoy without success. As you tried pd1-inhibitors twice. Reason why I bring this up is, that immunotherapy can achieve long lasting response unlike tki. Of course yervoy has worse side-effect profile than pd1-inhibitors. Response rate is also inferior. But if immune reaction is achieved against cancer long lasting response is possible. If I would be in your situation I would try stool transplant from patient, who is responding to immunotherapy before starting immunotherapy again. As clearly for some reason you don't seem to respond to pd1-inhibitors. If your gut microbiome is the problem stool transplant solves it. After stool transplant I would try pd1-inhibitors and ctla4-inhibitors together. Problem is this is all experimental and very expensive, so convincing oncologist to try this can be difficult. This is the best plan, that I can come up with.

[Olga]

Jen, can you remind us pls what immunotherapy treatments you have already tried and for how long? As Jussi noted, there are some strategies avail. tor try to convert none-respondents to respondents - fecal transplant, SBRT, additional drugs that could improve the response - some are avail. on trials so avail. off label. In the beginning of Ivan's treatment with Keytruda, when we discussed our idea of adding SBRT to one of them mets to improve the visibility for the immune system, to give it a target, with numerous oncologists and radiation oncologists, Dr.Razak from Toronto told us that he always adds the SBRT to some met or even a primary if the patient does not respond to immunotherapy treatment alone. And he has seen much better results in his practice than the reported ones without SBRT.
We have also been told by one oncologist that he had a case when it rook almost two years for one patient to finally respond to Keytruda - may be something just changed in her body and the immune system was finally able to recognize the tumor. From the publications I know that it is not rare when the immune active cells are concentrated at the tumors margins but not entering by some reason.

[jenhy168]

Thx everyone.
I tried Opdivo with vandetanib for 3 mos, then opdivo with axitinib for 3 mos in the first half of 2017.

I might of even taken opdivo maybe in 2016 or 2015...i can't remember off the top of my head....

[jenhy168]

Which is better to treat my 1cm muscle met near spine?
1) Resection via surgery
2) SBRT Radiation
3) Ablation

[D.ap]

Hi Jen
What are the possible pros / cons being explained to you by surgeon on surgery ?
Are you still on anlotinib ?

[Olga]

To answer you would need to consult the best avail. specialist in the discussed modality re. feasibility to completely destroy it and risks associated with the treatment and weight all 3 options then - there is no simple answer. it depends on location and every modality has its collateral damage. Is there any way you could do it in conjunction with Keytruda or Opdivo treatment? Also one of our members has just done cryo for lung mets combined with the simultaneous injection of the immunotherapy directly into ablated met few hours later, in Spain - Seth from South Korea traveled there to get that done. The combination was done in attempt to create an abscopal effect. We have no idea re. result.