Jack from Los Angeles - Dx Feb 2021

[D.ap]

Also from my understanding, your case of Keytruda starting to work after 9+ months into treatment is statistically rare.

Hi Jack ,

If there was a store for ASPS it would be called “The statically rare, are us”. 😊

I agree with all the Nhi has responded with.
ASPS is a certainty to grow when it is given an environment of immune suppression and with TKIs, even the targeted multi-TKIs, the likely hood of a patient developing a resistance is more statically a possibility, in my opinion .
You are 7 months post surgery and quite frankly your lung growth is quite subdued for having had major surgery .

I also agree 100% with Olga on treating the 2cmish lung tumor , if deemed safe to treat, with cyro to create an “in situ” vaccine response to ramp up your immune system. Our son inadvertently subscribed to an in situ cryoablation in 2015 and consequently in my opinion had a great response to Opdivo .
Here’s a discussion on utilizing cryo with immune therapies..

https://cureasps.org/forum/viewtopic.php?f=55&t=1670

As Nhi and Olga have pointed out you have been doing a great job in your care especially your nutritional basis .👍🏼

I personally feel the Keytruda is working and needs more of a chance to show it’s true potential.

My opinion.

Sincerely,

[ntran727]

Hi Jack,

Sorry I didn't see your response until now. It makes sense then in terms of entering the trial if it is going to be closed out soon, as you can always go back to immunotherapy like your oncologist said.

My case is definitely rare, and I attribute the response to the lifestyle changes I made since I started having positive scan results a few months after making the changes. Before that I was on it but still progressing although slowly.

Let us know what treatment you decided to go with.

-Nhi

[Couchpotato1999]

Hey guys, wanted to give you an update.

I did some "CT Guided Brachytherapy" procedures to remove 2 tumors that were located in inoperable and troublesome places (one by the heart which was 3 cm, and another one by an artery leading to the heart also 3 cm). My experience has been great, quick recovery time and the tumors stopped growing (they haven't began shrinking yet because the procedure was done 2 months ago).

So if you have a tumor located in a bad / inoperable area, it's worth looking into this procedure. Dr. Robert Suh is the Interventional Radiologist at UCLA that does this procedure, and Dr. Robert Chang is the radiologist that plans the radiation treatment. My understanding is, UCLA is one of the few places in the U.S. that does it. It's minimally invasive - they stick a catheter into the middle of the tumor and radiate it.

Olga thank you very much for the recommendation to see Dr. Suh, that was great advice :)

Also I've started taking the trial drug Anlotinib. This is my 7th week of taking the medication, and the first CT scan results came back as "Stable Disease" because so far, the tumors didn't grow during the 6 weeks that I've been on the trial. The drug was developed and already approved for use in China a few years ago. It's in Phase 3 Trial here in the U.S. I'll post more updates after I get my next scans back in 6 weeks. Side effects are minimal for me.

[Olga]

Good to hear re. procedure went well, it always pays to get the complicated procedures like this with the lung punching performed by the very experienced interventional radiologists. The procedure sounds interesting, we had someone who had this type of treatment done to a heart metastasis in China, but due to an extremely difficult location it was done in a semi open access using small incision. Keep us posted pls, and good luck.

[D.ap]

Hi Jack,

Good to hear from you.
The procedure sounds very interesting.
Do hook up with Ivan as he combated tumors around the heart as well with great success.
Was the procedure considered high or low dose Brachytherapy ?
Were you consciously sedated or put completely under ?

Had you been on Keytruda plus axitinib,prior to the procedure ?

And it looks like you started on Anlotinib about a week after the procedure?

[Couchpotato1999]

Hi Debbie,

Yep I've been in touch with Ivan. The procedure was high dose brachytherapy. For the bigger tumor, they left the radiation catheter in the tumor for about 25 minutes (they used 1 radiation catheter for the procedure and placed it in the middle of the tumor).

I was conscious the whole time and you need to follow breathing instructions while they take the CT scan. Because they insert the catheter a little bit, and then take a CT image to see where it is, and then insert the catheter some more, then take another CT image, until the catheter reaches destination. They gave me some Fentanyl to keep sedated. Overall it was an easy procedure for the patient.

I started Anlotinib 3 weeks after my last Brachytherapy procedure. The First CT scan happened 5.5 weeks after I started taking Anlotinib. You take the medication for 2 weeks then stop for 1 week. Then they give you another box of medication which you take for 2 more weeks then stop for 1 week. So they give you the CT scan in the middle of the 5th week. The CT Scans are more frequent at the start the of the trial, and then they might make it less frequent.

I stopped using Keytruda last year. I know they want you to be off of treatments for a period of time before you do the procedure, I'm not sure what the criteria is (maybe 6 - 8 weeks?).

[D.ap]

Hello again Jack,

Thank you for the information.
As patients , we never know when we may need to utilize these techniques / tools , to get rid of these inoperable tumors .

Does the trial require a wash out period for immune checkpoint inhibitors or were you still on axitinib as well at the end of 2021 ?
Were you tested for the EGFR component, in your molecular testing?

[Couchpotato1999]

Hi Debbie, no problem happy to help. I stopped taking Axitinib at the end of 2021. I am not familiar with how long the wash out period needs to be, that needs to be consulted with the Radiologist. When I got the procedure done, it has already been so long since my last treatment that the wash out period wasn't an issue.

Regarding the EGFR, I get the result for that when I do the Comprehensive Metabolic Panel and my kidneys are normal. Are you referring to the VEGF by chance? I did get a genomics blood test done called RGCC Onconomics Plus blood test, and it tests for cancer markers in your blood as well as which medications could work for you. If you are interested, you could call the RGCC office in your country and check if there are service providers doing the RGCC blood tests in your area. My VEGF is pretty high along with some other cancer markers. However I was told that anyone who is diagnosed with ASPS will show these high cancer markers.

When I got my primary tumor removed, I also sent tissue samples to a company called Certis Oncology (based in San Diego). They take the tumor and implant it into mice to grow, and then they test various drugs on it. So I also did that, and Gemcitabine (Gemzar) was the only drug that worked in the options that we tried. The mice don't have much of an immune system, so I don't know if you can try any immunotherapy drugs. But you can try chemo and TKI trugs.

[D.ap]

Jack ,
So what I was referring to was the EGFR not the eGFR.
The growth factor receptors that were found in and on your primary tumor.

Was a biopsy performed on your lung tumor(s) or maybe a blood biopsy was possibly performed, to suggest to the doctors that Anlotinib would be of benefit to your lung tumors ?

Our families experience with tyrosine kinases inhibitors has been limited to an 8 week stent on sutent, back in 2015. We were looking at the cediranib trial at NIH in 2014 ,prior to that ,but didn’t reach the 1cm tumor required to have a target for the drugs response . Then our active brain Mets made us ineligible for the trial.
We too had a molecular test performed on our sons primary thigh tumor. through Caris Target Now which was in Arizona . It
showed *fluorouracil, capecitabine, pemetrexed,
*gemcitabine, (gemzar )
*temozolomide ( Temodor) dacarbazine as potential meds to be used as benefiting our son.
He has used Temador in conjunction with his brain SRS/LITT treatments , which I personally feel helped in their subsequent eradication back in 2015, 2016 .

Not trying to alarm you , but is Anlotinib known to cross the blood brain barrier in its efforts to keep tumors from forming?

[Couchpotato1999]

Hi Debbie, I just checked my genomics testing report and I see that it did test for the EGFR - mine is not elevated. I've never performed a blood biopsy, that sounds interesting and I will check with my oncologist about that. They did a lung biopsy and confirmed it was ASPS.

May I ask where your son got the LITT surgery done? And also if you happen to know which hospitals are highly experienced in performing this surgery on the brain? This sounds like an interesting procedure in case if I get brain mets. My last brain MRI was done in March and it came back clear.

I'm not sure if the Anlotinib crosses the blood brain barrier. But I heard of a case where the patient had ~100 lung mets before they started the Anlotinib trial, and then it shrunk the tumors to the point where they became undetectable on the CT scan. I have also heard one patient on the trial has been on Anlotinib for 2 years and the drug is still working.

So my current thinking is, hopefully the Anlotinib can work well for me and substantially shrink the tumors. Then I will ask my oncologist about starting another systemic therapy (like Gemcitabine) right after the Anlotinib.

[D.ap]

Jack ,
We utilized the LITT to help break down the possible necrosis that had resulted from the SRS / radiated larger of the 3 treated brain tumors.
This is the link of article I posted in 2015.

viewtopic.php?p=7907#p7907

Our son took part in this study -

https://thejns.org/view/journals/j-neur ... e-p804.xml
It pretty much helped to show the safety of the LITT procedure and how brain / memory functions are most times not affected.

The brain is known to not dissipate dying tumor matter as it pretty much has no where to go within the cranial area .
Necrosis can be as dangerous as the tumor itself.
The LITT helps to break it down.

We had it performed by the neurological radiology department ,at KU Med ( University of Kansas ) in Kansas City , Kansas .

[Couchpotato1999]

Thanks for the info, I just found an article that says Anlotinib crosses the blood brain barrier:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216446/