Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Seth
Will the intervential radiologist use an Mri or a CT scan in the guided cyro procedure ?

Jussi, thank you for your opinion! Your words give me a feeling of relief.

Olga, i’ll ask them after third cryo is ended. If there is an abscopal effect, then i dont have to get cryo on bones. Right??

Debbie, it’s ct guided cryo!!

Cryo is the less damaging modality for the lug mets application especially if close to the blood vessels/heart/wind pipe/trachea - they retain the full functionality even if got in a freeze field.
The plan is to destroy the tumors locally as a main goal and if possible to produce an abscopal effect - as a secondary goal. So the damage (certainly more with thermal based ablations) has to be balanced with the expected benefits (uncertain with any ablation). It makes cryo better.

Good point Olga.
All important organs being considered with the destruction of the ASPS tumor(s), be first and foremost !
And the abscopal effect ( with the ICIs Opdivo plus yervoy ) , would be a plus if chance happening of adjunctive ICIs were timed with administration to cyro immune response ?
But I’m certainly not a doctor and Seth should consult his docs .

:)

Thank you Debbie and Olga!! Olga’s statement is exactly same as mine.

Do you hear about apatinib?? I just saw this year’s asco publishment, there is remarkable effect(100% ORR) of apatinib on asps.

http://abstracts.asco.org/214/AbstView_214_209841.html

Seth
After re reading Lynette’s post on Jorges personal , I was reminded of how Jorge used Keytruda along with cryoablation , to create an abscopal effect throughout Jorge’s abdomen area.
Looks like cyro then 4 days later Keytruda by infusion .
With good results .
http://www.cureasps.org/forum/viewtopic ... =225#p9186

Thanks Debbie!! I read it. And can get some hope:)

I have some questions. I’ve been taking pazopanib from the first surgery(Nov. 2017). I really want to stop it. But i’m quite worried about rebound after stopping tki. So, after first cryo and ici treatment, i’ll stop taking tki. How do you guys think about this idea? Because ici is injected directly to mets, i’m not sure about whole body effects..

Hello Seth ,
For as many unsuccessful stories that we read of here , there are indeed a lot of successful stories too, aren’t there ! : )

So your doc is saying you can continue on pazopanib during your Cryo and tumor injection procedure ?
I believe that it is recommended for a patient to discontinue TKIs 1 week before until 1 week after to help to prevent possible bleeding / healing issues ?
Since it is a vascular inhibiting med.

Tki will indeed increase the bleeding risk. I would be suprised and a little forried if specialist doing the cryo wouldnt demand that you stop tki before cryo. This is one of the reasons why I dont like to start tki early. You must stop tki for operations and during breaks tumors can grow rabidly.

Yesterday, i took 3rd cryo. Doctor said mets that took cryo at 1st and 2nd cryo is being dead. It’s not fully dead but at necrotic status. So, it’s good news! There was pneumothorax after 2nd cryo, but beside that side effects are very easy to deal with. Doctor said that abscopal effect was happemed to 3 patients from 60 patients that took ici directly to mets!!

Hi Seth,
thank you very much for an update. Your sharing the experience with us about the combination treatment of cryoablation for the lung mets with immunotherapy drugs small dose injected directly into the ablated site during the procedure is priceless, it is an unique treatment and now we can get the information first hands from you!
Pneumothorax is a frequent adverse event during the lungs local ablation treatments when there were no surgeries on the lungs before, so there is no scarring around the lung and it is easily deflated if pierced and there is an airleak. Did you have to be hospitalized to treat the pneumothorax, did they insert the tube to drain the fluid?
Do you know what is the injected dose, and what exactly did they use?

Olga wrote:Hi Seth,
thank you very much for an update. Your sharing the experience with us about the combination treatment of cryoablation for the lung mets with immunotherapy drugs small dose injected directly into the ablated site during the procedure is priceless, it is an unique treatment and now we can get the information first hands from you!
Pneumothorax is a frequent adverse event during the lungs local ablation treatments when there were no surgeries on the lungs before, so there is no scarring around the lung and it is easily deflated if pierced and there is an airleak. Did you have to be hospitalized to treat the pneumothorax, did they insert the tube to drain the fluid?
Do you know what is the injected dose, and what exactly did they use?

They put ici into my lung nodules 3-4 hours later of cryo! And ici was opdivo plus yerboy and i cant remember dosage, but it was small dosage.

When i get pneumothorax, i have to hospitalize one more day(if there is no pneumothorax there is just 1 day hospitalization) and they insert tube!

Seth
I hope you are beginning to feel better after the pneumothorax experience. I’m sorry that happened.

As Olga has said , thank you so much for sharing your experience as it helps all! : )

Are the responsive patients also ASPS patients ?
Being called Stage 4 ?
Looks like 3mg/kg is still the recommended dose with Opdivo . Infusion of course not direct injection.
All your tumors were treated with a small dose of opdivo and yervoy based on size / volume ..
4+2+2= 8cm one dimentinal

Our sons primary

148 gram, 10.8x6.8x4.0cm
Positive margins : )

Or maybe all calculated divided by each treatment ?
So all lung tumors have been treated ?

D.ap wrote:Seth
I hope you are beginning to feel better after the pneumothorax experience. I’m sorry that happened.

As Olga has said , thank you so much for sharing your experience as it helps all! : )

Are the responsive patients also ASPS patients ?
Being called Stage 4 ?
Looks like 3mg/kg is still the recommended dose with Opdivo . Infusion of course not direct injection.
All your tumors were treated with a small dose of opdivo and yervoy based on size / volume ..
4+2+2= 8cm one dimentinal

Our sons primary

148 gram, 10.8x6.8x4.0cm
Positive margins : )

Or maybe all calculated divided by each treatment ?
So all lung tumors have been treated ?

Thank you Debbie :)

Maybe i’m his first asps patient!
Yep, i’m called stage 4
I think 1/2 dose is used. Dr said that we dont have to use recommended dose because we inject it directly.

My primary has similar size with your son’s(it was 11*6cm)! And also got positive margins when it is removed.
I think dose of ici is depend on size of each mets!
From the biggest one, i treated 7-8 mets with 3 times of cryo, and wendnesday is my last lung cryo.

I’m considering get a cryo for a small bome mets(1-3cm) too.

Does anyone has experience of bone met cryo??

We do not have any personal experience with bone cryo, but I know someone who had a cryo for the jaw bone, with the success. On the other hand, a radiosurgery could be used for the bone with less danger to break it (probably, need to consult the dr). May be the same doctor can do it.