Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi,

PD-1 therapy is not available in your country? Just do cryo. There's no need to do an open thoracotomy for so few, and so slowly growing nodules.

Ivan

Hi Martin.
I am not sure if we have the full information about your case as there were no updates between May of 2022 and Jan. 2024.
Can you please clarify:
Is Keytruda available for you under your insurance?
Have you had any systemic treatments done between 2022 and 2024 or it was just watched/scanned?
How often are you scanned?
Have you had any other parts of your body scanned aside from lungs - brain, abdominal?
Are you willing to travel to the US for the cryo?

Then we can discuss your options.

Hi Ivan and Olga

Keytruda is available but none of the oncologist I have talked is willing to start Keytruda looking at my case since begging. it will be almost impossible under my insurance. If needed I will have to finance it on my own.

I did full scan this year, lung, Brain, Abdomen, pelvic. all the rest is OK.

I've had no systemic treatments done never.

I had a meeting with another oncologist from Vienna, which has suggested to me to do another CT in June. If there is growth to remove the nodule and do pathology to determine what it is. Or just remove and see how it goes in the future as I mentioned the laser assisted surgery.
He again said I have other cases like you that we removed the nodules and was not asps at all but you never know until removed.
I will also send CDs next week to SAFIR Germany to verify if I'm eligible for Radio Surgery with the current size. last time they told me 10mm is to small and may be missed. So now I will check again. I'm just not sure if this type of intervention is successful with ASPS.

Random nodules growing in the lungs post ASPS diagnosis.. yeah, right. Long odds of that.

Hi Martin.
Since you did not have any treatment and was just watching your nodules to grow slowly during few years, those are 100% ASPS. Don't go to that oncologist anymore, because what he said is irrelevant to your situation - if there are nodules with a history of the slow growth from one scan to another during few consecutive scans in a patient with known ASPS those are metastases.
Good quality radiosurgery burns the same way any metastases from any cancer or sarcoma. They are basically totally burned, and the only real question that you need to ask if they are able to hit the target with the high probability. This is why you need to be looking for the place with the high volume of treatments.
Let Dr.Drew to review the scans. Because Dr.Rolle his mentor that did Ivan's surgeries found many more than our local radiologist in the beginning.
I have no clue why did your oncologist deny you Keytruda if it is well documented to be super active in ASPS. Our insurance also refused to cover it for Ivan in the beginning and we had to write an appeal with the arguments and expert opinions from Dr.Breelyn A Wilky from the US and they agreed to pay.
https://pubmed.ncbi.nlm.nih.gov/31078463/
I think she moved some other place, find her
she was nice enough to participate. Then they paid. But some people who needed to pay out of pocket paid for 3 treatments only and it worked.
If you decide to go with the radiosurgery, it is beneficial to combine it with Keytruda for synergy and to take first doze right after the treatment within 1-2 days.
Don't rush, think it over, investigate your options. Keep asking us until you get a good understanding treatment modalities and places to get those.

Hello Olga,

I will send my CDs to SAFIR Germany for review this week, last time they have said that 10mm is still small and there is probability to miss it. If they tell me that this time it is possible to do it I will do it without any further waiting for a next scan.

in 2022 dr. Drewes saw the same nodules when I sent him the CDs.
This was his initial reply after reviewing the CDs.
Dear Martin,
I detect 2 smallest nodules on the right side, 1 in the middle and 1 in the lower lobe, and 1 paramediastinal nodule in the left upper lobe.
The nodule on the left side is growing over the last years and the infiltration of pleura mediastinal is possible, that`s why I prefer the operation on the left side.
if I should operate I would made on the left side an video-assisted laser-assisted metastasectomy.
I would only resect this tumour with 1318 NM laser to spare lung tissue, but I would not palpate the lung complete in this case. After histological result and your recovery we should discuss when is the best date for the operative procedure on the left side(thoracotomy and laser resections)


Regarding the Oncologist it is Thomas Brodowicz https://www.privatklinik-doebling.at/en ... -brodowicz, he is the only one that I know with high experience with ASPS. I had my last call with him where he suggested to see if this nodule will continue growing or not same as in 2022 where the older nodule of 10mm just stopped.
I do not know why they are all opposing my request for Keytruda or any surgery or Radiotherapy. Honestly I'm totally confused. I would like to do something just not sure what is the right choice.
I would prefer Dr. Drewes but also not sure if at this moment this is the right idea. Because he can do the surgery without any problem.

Martin, can you pls clarify what exactly the radiology report says:
how many nodules are there
how many are growing
what are the largest nodules sizes