Jen from California - Dx 2009

[jenhy168]

With srs control rate of mets smaller than 6 mm is practically 100 percent. So even though this met is bigger than ones treated before it is still very small. I am more concerned about location of this brain met. Is it in meninges? Is there leptomeningeal spread?

Hi Jussi, I'm not sure exactly where the location of the brain met. The only info that I know now is what was reported in the brain scan result.

Per scan: "New 4 x 6 mm enhancing dural based lesion along the right parietal lobe with associated vasogenic edema. No hydrocephalus or mass effect."


What happens if it is in the meninges? Easier to spread??

[jenhy168]

Dura: The outermost, toughest, and most fibrous of the three membranes (meninges) covering the brain and the spinal cord. Dura is short for dura mater (from the Latin for hard mother). Also called the pachymeninx (singular) or pachymeniges (plural). Epidural means outside the dura.

[D.ap]

Hi Jen
Anytime the brain or any part of our bodies have metastatic tumors , it time to figure out plan B?

That's what Jussi is saying . If it is spread with in the vascular system within the brain that needs to be fought systemically?
Especially as your tumor load is excessive with your body weight?

Jussi , your thoughts or suggestions?

We use temador prior and during brain SRS ?


Jen, let us know what the oncologist /radiologists says about the area to fight.
Need

Have you had a physical lately ?

Profiles to establish your over all health need to to seen by all doctors to trudge on..
You've been thru ALOT of various treatments over the last year..

Lets connect in morning
and add comments anytime..

Love and hugs to you


Debbie

Ps love the latin translation.. excuse me for lauging
You are the hard mother
Never forget that ...hugssss

We'll get thru this girl..love you

[Olga]

Jen, have you been evaluated for this trial? specific for ASPS and our patients are having a good responses:
https://clinicaltrials.gov/ct2/show/NCT03141684

there are diff. limitations, read the exclusions criteria. there are time lines, you can even have the brain met treated and later enroll.

[Bonni Hess]

Dear Jen, I am so sorry for your new diagnosis of another brain met, and that your RGX-104 Trial has now been discontinued after only 2 months on the Trial due to your liver met recurrence and the new brain met. I think that it is very important for you to move forward as soon as possible with treatment of the new brain met, the liver met recurrence , and the recently revealed "stable" spinal area met, and probably in that order with the new brain met receiving the highest priority given its relative rapid rate of growth since having not been detected in your brain MRI 2 months ago. I agree with Olga that Cryoablation of the liver met may be a better treatment option than the proposed Y90 embolization. Admittedly, I am not personally familiar with Y90 liver embolization, but embolization was used for Brittany's spinal met and because ASPS is so vascular the neurosurgeon said that it was a "bloody mess" which raised our concerns of the procedure having spread tumor cells. Ultimately the embolization failed to prevent continued growth and spread of the remaining unresectable spinal tumor tissue and after 3 weeks of failed intensive photon spinal radiation, an emergency major spinal surgery was required. If you decide to move forward with the Y90 liver embolization instead of cryoablation, I strongly advise you to be as knowledgeable as possible about the embolization procedure and the possible risks of it as well as requesting documented data regarding treatment success for embolization of ASPS liver mets. Regarding Olga's recommendation for the Atezolizumab Trial, I noted that one of the exclusion criteria is prior treatment with an anti- PD-L or anti-PD-L1 therapeutic antibody or pathway targeting agents which unfortunately may disqualify you due to your prior Opdivo and Axitinib treatment. I will be anxiously awaiting the results of your discussion with your oncologist and radiation oncologist when your time and situation allow, and in the meantime know that you are being held very close in my heart and continued most caring thoughts. Reaching out to embrace you with special hugs, deepest caring, healing wishes, and continued Hope, Bonni

[arojussi]

I was really just asking if there is leptomeningeal spread? If I understood radiologist report correctly there is no. I would still ask doctor if there is leptomeningeal spread just for peace of mind. Some cancers can spread to liquid spaces in pody. If my memory serves me correctly this is called leptomeningeal carcinomatosis in central nervous system. It is very dangerous and has very poor prognosis, but asps relies highly on new blood vessels, so I am not even certain that asps can form leptomeningeal carcinomatosis.

I think Bonni alrady gave you better opinion about nearfuture treatment than I can.

Your theory that clinical trial made u worse: medicines, our bodies and asps interact with one another in very complex ways and I dont think anybody can answer what caused new brain met and other growths. sometimes immunotherapy has caused some older patients to became hyperprogressive. To me your spread still sounds more like normal late state asps growth.

[jenhy168]

Thanks Jussi. To my knowledge and per the scan results, there is no leptomeningeal spread.

I'm going to have to see if I can get a consult with a cryo doc for the liver recurrence. As of now, I know the interventional radiologist plan of attack for the liver recurrence is y 90. He was the one that originally ablated it with microwave ablation.
I can't remember what he responded with when I asked if we can cryoablate it, but I'll re-ask him again next thursday when I go see him.

Hi Olga - no, I don't think i have been evaluated for that atezolizumab trial. I'm going to see what my onco says what my treatment plan is (other than taking care of the brain met and liver recurrence). I will also revisit the spinal area met discussion with him.

[jenhy168]

i have y90 embolization next week for my liver recurrence. hopefully all goes well.

[jenhy168]

Hi all,

Had Y90 embolization done earlier this month on my liver recurrence. Won't know if it's successful until I get my follow up scan done.

Trying to sign up for the clinical trial Anlotinib...going to do the prerequisite scans this week and next week (echo, CT chest & abdomen, brain MRI) to see if I'm eligible. Hopefully I'll be eligible so I can start in December.
https://clinicaltrials.gov/ct2/show/NCT ... w=1&rank=6

~jen

[D.ap]

Hi Jen
Thanks for checking in with us

It looks like is easier on gastrointestinal area ?

For what that’s worth

https://jhoonline.biomedcentral.com/art ... 016-0332-8

I’m interested in it’s out come and sure am hoping for lung tumor and brain barrier crossing as well.


Hugs there girl .

Going to check it out and get back with questions

What good points does your onc see ?
Has he or she seen good results with ASPS patients?


Love
Debbie

[jenhy168]

Hi Debbie,
I believe the drug had good results in China (the drug is from a chinese pharma company)...so they brought the trial as phase 2/3 to US. My onco only got access to the trial just recently about 3 months ago. I'm not sure if he has any other ASPS patients on it, as he doesn't have many ASPS patients to begin with. (Chrisanne - Jolie's mom and I share the same Onco)

When I see him again I can ask him if he's seen good results with other patients.

I'm just glad there;s another treatment option for me to try, and it helps that this drug trial is specific to the ASPS disease.

Trial pre tests: Echo, EKG, Chest CT, Abdom/pelvis CT are scheduled for me at the end of this week. Will keep you all updated.

~jen

[D.ap]

Thanks Jen

That’s commendable of them to have it as a beyond dose
toxciety trial .
However I’m noticing that from the prior link Anlotinib, the top doseage was 10 mg but the trial is 12mg?


The clinical trial Chrisann part of ,is not a good fit for you ?

http://www.cureasps.org/forum/viewtopic.php?f=87&t=1247

My love and wishes for good results , for sure .
Love to you

[Bonni Hess]

Thank you for your thoughtful update dear Jen. My MOST positive thoughts and great Hope are with you that the Y-90 liver embolization was VERY successful in completely destroying your liver recurrence and I will be anxiously awaiting the results of your post embolization scan. I am so grateful that you have a promising new systemic treatment option to try, and I am holding VERY tight to Hope that you will be eligible to undergo treatment with it and that it will be VERY successful in stabilizing progression of your disease and shrinking/destroying your mets. I have the same questions as Debbie about the reason for your oncologist's choice of Anlotonib for you, and if there is any documented data regarding ASPS patient successful treatment results with this new drug? Also, since it is a Phase 2/3 Trial, does that mean it is a double blind Trial in which you may be just receiving a placebo drug instead of the Anlotonib? I will be anxiously awaiting your answers to these questions when you receive them and your time allows for you to respond and update. In the meantime, I Hope you are feeling good and enjoying all of the special beauty and joy of the approaching Holiday season. With special hugs, caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Debbie -the trial the Chrisann is part of - our onco tried to get me access to it but they wouldn't accept any more ASPS patients.

Hi Bonni,
For the anlotinib trial - I wouldn't be receiving a placebo to my knowledge...I'll be receiving the drug. Don't know dose yet either....
First got to see if I'm eligible via the pre test scans....and then go from there.

Thank you for all your thoughts.
~Jen

[jenhy168]

Bonni,

I think the trial that did the double blind randomized study of anlotinib was completed.
https://clinicaltrials.gov/ct2/show/NCT02388919

The trial I'll be on is phase 3 of anlotinib in ASPS
https://clinicaltrials.gov/ct2/show/stu ... 1#contacts

phase 3 i don't think there will be placebo...