Jen from California - Dx 2009

[jenhy168]

Hi all,

I actually really like the doctor (Dr Padia). He's informative, listens to your questions, seems to have a good amount of experience doing these liver ablations. I would recommend him for RFA or Microwave ablation.

I play to have a 3 month follow up scan w contrast.

I'm weathering axitinib okay so far. No crazy side effects yet.

I will revisit ablating the most concerning / symptom causing lung mets after I get my chest CT scan.

~Jen

[jenhy168]

hi guys,

quick update - i'm off opdivo and axitinib since it wasn't working. Just started a phase 1 clinical trial RGX 104....

I've pretty much tried almost all therapies and our oncologist and I had to think outside the box and try something else...(RGX104)

https://clinicaltrials.gov/ct2/show/NCT02922764

~jen

[D.ap]

Hi Jen
I'm sorry to hear of the discontinuation of Opdivo.
How are your liver values after the ablation ?
I would imagine they are ok if you are starting on a trial drug that is targeting the liver ?
What progression amount did you see to determine failure and consequently the discontinuing of Opdivo ?

[jenhy168]

Hi Debbie,

Liver values after ablation are stable or smaller (can't remember). Dr said it looks good after ablation based on the CT scan.

Re. progression amount to discontinue Opdivo. Chest CT scan showed increased size in some lung nodules by 2-3mm...the increase in size ranges depending on specific nodule. But note that there was increased progression in the lung mets at the 3 mo mark of taking opdivo and axitinib and 6 mo mark. We determined it wasn't working.

Recent brain MRI is stable and no new brain mets.

Need to get full body bone scan soon...haven't done it in maybe in a year.

[Bonni Hess]

Dear Jen, I am so sorry that your Opdivo/Axitinib Trial treatmenr was unsuccessful in stabilizing the progression of your disease. I Hope that you are having a successful response to your new RGX-104 Clinical Trial treatment and that you are tolerating the drug well. In making your decision to begin the RGX-104 was there any documented data available regarding treatment success for ASPS patients who were treated with this new drug? I know that you have only been on the RGX-104 for about a month, but have you had any monitoring scans yet to try to determine if you are having a successful response to the drug thus far? Perhaps when your time and situation allow you can open a topic for RGX-104 in the Clinical Trials section on the Discussion Board to post updates,about your RGX-104 treatment experience and results. In the meantime, please take care, know that my most positive thoughts and very best wishes for treatment success are with you, and keep in touch as you are able. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[jenhy168]

Hi Bonni,

I'm probably the 1st ASPS patient to be on RGX 104. I've basically tried most treatments that are suggested for ASPS patients, so we decided to go out of the box and try RGX 104. My doc had another sarcoma (diff type) patient on RGX 104 and he/she experienced less pain at their tumor site.

I've been on Rgx 104 for 2 months and just had my 2 mo CT chest abdomen scans. CT chest showed overall stability, some nodules increased a little, a couple decreased. Doc decided to keep me on this trial and continue treatment.
--
However my abdomen CT said that there was probably recurrence at my liver met ablation site.....which is weird because my July CT abdomen scans looked great. Note that i had by liver met ablated with microwave in May.
-- per scan:"Low-attenuation/hypoenhancing hepatic segment 8 ablation zone with slight increase in size of the nodular hypervascularity along the inferior lateral aspect of the ablation zone concerning for malignancy."

Anyone have any suggestions about the possible recurrence? The intervention doctor suggested Y 90 Embolization, but wanted to talk to my oncologist first to see if we should wait another 2 mos to see how it looks then or if it's even possible to treat with Y 90 now while I'm on the trial. I'm sure it's an option to re-ablate the area as well...

---
Also my chest CT showed that I have a stable met near my spine. It was the first time this was mentioned in my CT scans, so this is new to me.
-- per scan: "Stable enhancing pericentimeter nodule in the left paraspinous musculature posterior to the left T8 transverse process (6-58)."

my onco said i should just keep watching this spot instead of trying to go treat it now. He focuses more on the "overall" picture of my health and doesn't really think it's beneficial to go after individual mets if it's stable.

Anyway, i'm tolerating rgx 104 okay so far....tired as usual and get nauseous sometimes.

Thanks guys,
Jen

[arojussi]

If there is recurrence in liver met I would simply do ablation again. Hypervascular pattern is in my opinion best way to see difference between necrosis and living asps met. if there is some growth and some shrinkage implaying mixed response then it is really hard to say if drug is working or not. Especially if drug is working with immunesystem. So if new ablation would reguire you to go off the trial then this is really hard decision. If interventional radiologist cant confirm that liver ablation failed then waiting few moths and having another scan is valid option.

[Olga]

Jen, thank you for the info.
Out of about 20 cryoablation that Ivan had, so far 2 recurred - one was local recurrence (incomplete ablation when tumor later recovered) and the other was a satellite recurrence - when there was a new small met on the margins of ablated area - either a contamination from the ablation prove or just an activation of the dormant met caused by the healing of the area after the ablation. He had them re-ablated both times without any problems, so in general I do not support the idea of leaving it as it is - why did you have it in the first place then?

Re. clinical trial you are on now - I found the following info:
RGX-104 is a small molecule immunotherapy that targets the immune system to treat cancer progression. It targets the liver X receptor (LXR). RGX-104 activates LXR, resulting in depletion of both myeloid-derived suppressor cells (MDSCs) as well as tumor blood vessels. MDSCs block the ability of T-cells and other cells of the immune system from attacking tumors.

This is the clinical trial info:
https://clinicaltrials.gov/ct2/show/NCT02922764

To decide how to proceed with the treatments, you need to find out the following:

1. Find out if having any invasive treatments would disqualify you from the trial. If not, I would have an add scan in 3 months as Jussi suggested and if the recurrence is confirmed, then re-ablate the liver met. Has the interventional radiologist seen the scan? Sometimes they disagree with the reading radiologists.
2. Find out if it is possible to cryoablate the soft tissue met in the spine. If left untreated, it can end by invading the between the vertebrae space. We had the case when it did and the removal was very traumatic for the patient. Cryoablation of the small soft tissue met is a relatively easy procedure.
You are on a phase 1 trial and in some sense it is easier to be on as it leaves more room for other treatments than the phase 2 or 3.

[jenhy168]

Thanks you for the advice and info.

Yes the interventional radiologist looked at the CT abdomen scan. He's pretty sure it's recurrence. I guess no one here has had Y90 embolization, but I feel like this treatment type would be less effective than re-ablating the recurrence with microwave ablation. I feel like Y 90 won't be as effective since asps is resistant to lower doses of radiation therapy.

"Radioembolization (Y90) Radioembolization is a minimally invasive procedure that combines embolization and radiation therapy to treat liver cancer. Tiny glass or resin beads filled with the radioactive isotope yttrium Y-90 are placed inside the blood vessels that feed a tumor."

As part of my rgx 104 trial, i have to get scans every 2 mos anyway, so if I don't treat it now and wait, I'll see what the progress is in 2 mos.

For the soft tissue met next to spine - is cryo the only way to go? Is RFA not good for this area?

[jenhy168]

What about SBRT for soft tissue next to spine met?

[D.ap]

Jen
Here's Toms prob that developed in using radiation
However I would imagine it depends on if it's near a vital organ that couldn't take lots of radiation (sbrt)and or cold
cyroablation ?

http://www.cureasps.org/forum/viewtopic ... =588#p3018

[arojussi]

Lets see if I got this right. So met is in soft tissue near spine. Met has been stable. Your doctor is right that if it stays stable there is no need to do anything but if it grows it can be too late to do anything. So it is very difficult decision. Stereotactic radiation works better for smaller tumors. (For tumors less than 6mm control rate is 100 percent and for tumors around 1cm it is still reliable. I had two over 2 cm brain mets treated with srs and other died other lived.) i assume same is true for stereotactic body radiation treatment.

For ablations I dont know if cryo is safer near spine than rfa. So if you decide to have ablation both rfa and cryo can destroy met, so I would just follow interventional radiologist recommendations. Of course if met grows to spine it is very dangerous situation, so I would try to prevent it with any means necessary. Ideally you can continue trial while having liver met and soft tissue met near spine treated with local treatments. Of course this is often against trial rules, but maybe doctor running the trial is willing to do exception.

[Olga]

The scattered radiation from the SBRT can weak the vertebrae bone next to it and cause the fracture (as Deb said in quoted Tom case). Cryo of the met in a soft tissue is an easy procedure, RFA might be painful and more damaging for the bones? Are you sure that you can not get treated by Dr.Littrup or Dr.Aoun (self referral and they try to work out with your insurance? do you want to contact Dr.Littrup assistant?) or that Dr.Suh would not cryo it locally? Both SBRT and RFA and may be even microwave can probably be used but as I understand cryo has less chance to damage the structures and less painful.
Phase 1 trial could allow that to be done, but you need to find out.

[arojussi]

Based on my personal experience I prefer cryo. All my cryoablations 5 so far were done by Littrup. For me cryo was almost painless.

[jenhy168]

All very good advice and suggestions. Thank you so much.

I'm definitely open to cryo or RFA, or even SBRT (although I am afraid of the potential damage to nearby structure for SBRT). I would need to get my onco on board because his stance is to do nothing and wait for 2 months and see if there's any progression.

I hate the wait and see approach, but I do understand that I have lesions / mets all over ( hundreds in the lungs, brain mets (treated w/SRS), rib met (treated with sbrt), liver met (microwave but with recurrence)...and picking off one here one there won't make much of a difference... UNLESS it causes pain and spreads into a dangerous spot like the spine.

So next time I see my onco, i will bring up to my onco the fact that I don't want it to spread to the spine and cause lots of problems or pain. I'll see what he says and maybe ask if I can cryo it with Dr Suh. As it is now, I've had spine aches (not super painful but sore) for the past year....I don't know if I just have a sore back like lots of normal people do, or if it's discomfort from my t8 soft tissue met. All i know is that it's not typically normal for people to have SPINE ache/ soreness...I understand back aches or soreness...

Note: I'm also a little afraid that if I do cryo or RFA to the t8 soft tissue met,...what if it causes seeding (I don't know if I'm using the seeding term correct here?) or spread due to the cryo/rfa needle? Isn't it a POSSIBILITY (although unlikely) to cause more harm doing these interventional treatments than just leaving it alone if it's stable?