Sharmaine from Los Angeles

[sharmeebles]

Thank you Olga, and thank you arojussi

I have the cryoablation scheduled for September 18. Dr. Der, who will do the procedure, described the cryoablation procedure as freezing the tumor and then fishing it out. I will send over a message inquiring this.

side question: is anyone taking cannabis oil and seeing reversal of tumor load?

[D.ap]

Sharmaine

Sounds like he’s proposing a biopsy as well as a treatment ?
Clinical trials and training is being done for that procedure .
I’d be cautious, as a biopsy needs to be performed by a well trained doctor so as to not create what’s referred to as seeding . The spread of malignant tumor upon the removal of the cyro probe .

https://clinicaltrials.gov/ct2/show/NCT01714518

[sharmeebles]

Hi D.ap!

There is no biopsy! Just cryo -- and yes, there is a risk of the cryo needle leaking tumor. But Dr. Der said hopefully when they freeze it, the met will be fully dead before they poke it.

Apologies for the confusion!

[Olga]

Our confusion relates to "Dr. Der, who will do the procedure, described the cryoablation procedure as freezing the tumor and then fishing it out." With the cryoablation, they:
1. poke your skin and the lung to insert the thin probe into the tumor (it is not frozen at that moment).
2. deeply freeze it into an ice ball that is bigger than the tumor with some add tissue around it.
3. retract the probe and leave this ice ball in place, it will show as a necrotic tissue ball till your body dissolves it.

[D.ap]

Sharmaine

Relieved to hear . However did the prior years, VATS procedure give you a clue to the lung moleculure composite , make up?

Always always make sure that any viable tumor removed is saved to use later in your care. : )

[sharmeebles]

UPDATE:
It's been awhile! Since my last update in Aug 2018, I have had
VATS for lung mets in Aug 2019
Craniotomy for my first brain met Oct 2019
Radiosurgery for a second brain met in May 2020.
I have an upcoming surgery this Wednesday, July 1st to remove 2 mets located on my lower back (Growth for this met was fast. From the size of a pencil eraser to about 3in within a span of 3 months. Unusual for slow-growing ASPS!) and left side under the armpit. I'm not feeling too concerned about this operation given they're very minor areas.

With ASPS starting to metastasize outside the lungs and procedures needing to be done in such temporal proximity, it appears the disease in my body is gaining acceleration.

CT SCAN UPDATE:
Two CT scans ago I had stable results. My most recent scan had more news, the new 2cm lymph node being the center of my current concerns. Onc said we are unsure if it's growth due to ASPS or reactive growth from an adjacent tumor that was treated with radiation. This is the summary my onc provided and parts of the report:
Summary: Mild growth in the tumors with a new left sided lymph node in the hilum of the lung (towards the center). This is next to the left upper lobe mass that was previously radiated. I don't think this can be removed surgically or radiated because of the location. It's not very large (2cm).
Report:
Within the right lung, there are approximately 15 well-defined pulmonary nodules. Most range in size from 5-15mm. Some are larger than on the prior study. Others are new.
On the left side, there is a spiculated 3cm nodule which is now connected to the enlarged pulmonary hilar mass. This nodule is roughly the same size as before. There are several other scattered nodules in the left lung, measuring up to 15mm in size. Most of these nodules appear slightly larger than the prior study.
Lymph Nodes: There is a new 2cm lymph node in the left upper hilum. It is connected with the 3cm spiculated nodule in the left upper lobe.

WAITING GAME, LIKELY STARTING SYSTEMIC TREATMENT/CLINICAL TRIALS:
My onc is going to present my case to the tumor board, and I hear back next week those opinions. He also plans on reaching out to Dr. Breelyn Wilky after the tumor board meeting. He predicts that if the 2cm growth is ASPS, his surgery and radiology colleagues will deem it too risky to operate given it's too close to the heart. And that we may opt for systematic treatment off label or seek out a clinical trial. In regards to Keytruda or opdivo, my onc says my immune signature from my tumor NGS (I don't know what NGS means) was low, not making these good options. He says Cediranib is an option to try off label.

I posted on our facebook page June 26th and am grateful for receiving helpful feedback and support from some of you. I'm struggling with feeling brave and positive with this news. Any more feedback or words of encouragement is greatly welcomed.

[Olga]

Sharmaine, hi. good to hear from you again.
You had some real problems during these two years. And your medical team was in general able to deal with them in house as I understand. So although some of the concerning lung mets could have been treated by the cryo (if other options are absent, Dr.Littrup and Dr.Aoun were able to treat hilar and other central locations for our members in the past with the success), as I understand, you are more inclined to accept the treatments they offer at home.
I am not sure re. plan to have the surgery first and to evaluate the treatment plan second. There are some interesting options and clinical trials that are based on injection of the drug intralesionally so they only accept patients with the accessible mets. Which you have two and both of these are planned to be removed. On the other hand, if you are to proceed with the Keytruda, the overall tumor burden depresses the immune system function so for Keytruda it might be better to have them removed and heal completely before you start. In ASPS as far as I know there is no connection found between the genetics of the tumor and the response to ICI drugs (I am sure Dr.Wilky will be able to clarify that). For response to Keytruda it is important to be physically fit with the strong muscle mass and have a healthy gut microbiome so the good quality food such as lean proteins and raw fruits and veggies with decent fiber amount would be the best plan to start asap as it takes time.
In case the ICI treatment is planned, there is a strategy to have it combined with the radiosurgery to some selected met or other local treatment such as cryoablation. Just to attract some immune cells to the treated tumor site and to let the immune system to recognize it, so after the breaks are released by the immune-checkpoint inhibitors, there is a specific target for the immune system that is readily available. But in your case, the lower back met is a bit to big for the radiosurgery and the armpit subcutaneous is to close to the skin, that needs to be protected from the damage as it weakens the immune system - skin has a special place in immune system functionality. We do not want to damage it and create a large inflamed area.
So overall I would briefly go over the available clinical trials in your area to see if any of them would need that armpit or lower back met as an injection site, before of the surgery, if possible. If not, the proceed with the surgery, feel good about getting rid of undesirable tumor burden and make sure you are healed before starting the K treatment.

[Bonni Hess]

Dear Sharmaine, As I expressed to you on the ASPS Facebook site, I am so very sorry for your disease progression and new challenges, but I a grateful that you now reached out to the CureASPS Board for information and input. As always, Olga has provided some excellent and very knowledgeable information and advice, and I agree with everything she has said. My continued special caring g thoughts, carng wishes, love, and continued Hope are with you, Bonni

[D.ap]

Sharmaine,
I concur with Olga’s suggestion as well.
Good to hear from you .
NSG ,next generation sequencing . It and TMB( tumor mutational burden) are used as the new liquid biopsy of sorts , to aid in determining immune therapy match ups. DNA .

I’d be curious to what size of data base the tumor board is comparing to and if it is inclusive of melanoma patients with their thoughts on your NGS numbers .

Back when Josh started Opdivo (2016) we took a shot in the dark when we started on this Med . His asps pretty much took off after not being on any systemic meds other than temador for brain mets. After LITT for the brain mets and a liver ablation, then a month of sutent all in 2015 ,his remaining lung mets (he had laser procedure in Germany 2012, 2013 of 150 mets), took off exponentially . As well as lower pelvic tumors, adrenal and pancreas .

viewtopic.php?p=9775#p9775

[sharmeebles]

Thank you so much for your replies, Olga, Bonni, and Debbie! <3

Olga - I forwarded this info to my onc, he finds it interesting and useful.

Update: My onc is still waiting to hear back from Dr. Wilky. He read the study results she published in the Lancet Oncology in June 2019. He summarized the results were encouraging but follow up is very short. Pembrolizumab or axitinb are not approved for ASPS and my onc says we could find a clinical trial with similar agents or if we can't find one locally, we could try pembolizumab off protocol and off label.
In regards to the hilar mass, my onc must defer to the interventional radiologists who at present don't recommend local therapy. The lesion doesn't seem to be causing any trouble right now so there doesn't seem to be an urge to treat it; leaving it in place may help assess the response to pembrolizumab.

I've kept to being treated at home because well, I've had trouble navigating how to seek care outside. I've ran into discouraging red tape with insurance when trying to seek care out of pocket :/

[D.ap]

Ie June 28


“I have an upcoming surgery this Wednesday, July 1st to remove 2 mets located on my lower back (Growth for this met was fast. From the size of a pencil eraser to about 3in within a span of 3 months. Unusual for slow-growing ASPS!) and left side under the armpit. I'm not feeling too concerned about this operation given they're very minor areas.”


Hi Sharmaine
Did this surgery happen?
I’m going to refer to Olga on the treatment questions but ask if your onc has an on staff aid Ie nurse and or nurse practitioner to help you orchestrate the off label , with insurance .
Your closing concern above .

“I've kept to being treated at home because well, I've had trouble navigating how to seek care outside. I've ran into discouraging red tape with insurance when trying to seek care out of pocket :/P”

They should have the knowledge and wherewithal to help you . 👍🏼💕
It’s not right for you to have to pursue this alone .😕
Love,

[sharmeebles]

Hi Debbie!

Yes the surgery has happened.

And thank you. It was terribly discouraging being transferred in circles phone call to phone call for several days only to end up being denied seeking a second opinion out of pocket because of insurance restrictions.

[D.ap]

Sharmaine ,
Is the insurance company denying coverage of the immune therapy ?
Or just a second opinion from another onc,to pursue the therapy ?

[sharmeebles]

Hi all,

Debbie- second opinion. Denied right at the gate. Thank you by the way for sharing about Josh's exponential results after opdivo and then laser. I inquired about laser to my onc but he doesn't see how I can do that being out of the country. What was that process like for you to get started for eligibility? I am aware Dr. Rolle is retired and there is a new surgeon.

Update from my onc:
He has not heard back from Dr. Wilky, but is open to trying the pembro + axitinib combo. Alternatively, he could send me for a consultation with Dr. Hamid at the Angels Clinic for evaluation of clinical trial.

I'm thinking get evaluated to see options while waiting to hear back from Dr. Wilky? Also when looking up on our FB page for pembro/axitinib mentions by our community, I came across Debbie's post about Brittany Sullivan's blog, which is helping put my mind at ease about that med combo http://johnandbrittanysullivan.blogspot ... URdXyXI7KU

[D.ap]

Hi Sharmaine,
Our experience with the laser procedure was in my understanding ,as I didn’t go to Germany , a very good experience .
I believe currently there is a truly different view of what needs to be seen with ASPS prior to the undertaking of the laser procedure? Namely the stabilization of the sarcoma by virtue of a systemic treatment ?
Any way Dr. Drewes would be able to answer that for you.
I feel you should investigate all options at this time Ie what the clinical trial has to offer.
Also will your sequencing be available to Dr. Wilky?
As you know she has seen a number of results specific ASPS patients , after being on pembro and axitinib since the trial began in 2016.