Martin from Macedonia - Dx Jan 2015

[MartinBube]

Hi Debbie,

From 2020 I have no visible growth on the CT. The only thing that he finds different is this nodule of 9mm that he is not able to see in 2018 and 2 radiologist mentioned that this scan is with lower quality, so he is not sure if somehow it is missed.
I do not have any pollutants at my job that I know that can cause this.

The last radiologist that i went to is very reputable and spent some time looking at 3 scans 2018, 2020,2021 however ASPS is rare so to all that I go here it is new and they do focus on what they see in the scan.

[Olga]

Hi Martin.
The ASPS mets do not grow in a linear fashion, they can stay or they can grow faster so there should be no assumption re. what the growth rate will be in the future based on the past dynamics.
The contacts for Coswig are in the Lung metastases topic https://cureasps.org/forum/viewtopic.php?f=51&t=1227
but Dr.Rolle says there are very much loaded with the Covid lung patients there. He is retired but keeps up with them. You can make an initial contact for the review anyways.
The other option is to cryoablate the mets that are close to 10 mm. To keep it small. The previous ablations complicate the surgery though as there are adhesion.
The other option is ICI drugs such as Keytruda or Opdivo.
You will need an evidence of progression for any invasive treatments though.

[MartinBube]

Hi Olga
My fear is that the nodule is 100% ASPS met and I need to do something fast. I need to start searching for options. With the current Covid situation even going abroad seems very difficult but I hope in few months that situation will calm down.
I will look for options for Cryo and also will contact Coswig to start communication, but definitely will have to wait until I do another scan to check for any evidence of progression.

I'm not sure if with the current status I should look for ICI Drugs, also for this I need to get in touch abroad as I'm not sure if they are available locally but i will try.
Brain MRI is the next thing that I will do and than the CT.
For me surgery is better option if possible and if necessary but lets wait and see.

[Ivan]

Hi Martin,

I suggest you get copies of your own scans, and look at the nodules yourself across multiple scans. It is not complicated. This software https://www.microdicom.com/ will view them.

Spend a few hours on them. Radiologist generally don't care enough to look carefully.

[MartinBube]

thank you Ivan, I will definitely try

[Olga]

Immune checkpoint inhibitors are fairly expensive if you pay out of pocket, so you should explore if they are available in your country for any indications under the medical insurance coverage. If they are, you will have to make a request for off label indication as ASPS is not one of the cancer types incl. in the list of types it is approved for. But there are numerous supportive publications and you may obtain an expert option to make your case.
Also look for the experienced cryoablation dr in your country or the one you can easy travel too, there is a pretty good chance you will need one at some point, it is better to be prepared.
Is your country name now is North Macedonia? its not EU member yet?

[MartinBube]

Yes Macedonia has changed the name to North Macedonia do solve almost 30 years problem with Greece. Not a EU member yet.
I will start exploring the options in the region for Cryo I'm almost 100% sure that is not available here locally. First options that come to my mind are Austria or Germany which is more or less 2h flight or maybe Turkey which does have very developed in medical point of view or Slovenia.
Unfortunately for all of this I will need to pay on my own.
Same is for ICI but I will check and see what are the options and possibilities.

thank you

[Olga]

We had the contacts with Pf.Vogl from Frankfurt, Germany he is a very advanced interventional radiologist with the experience
https://radiologie-uni-frankfurt.de/ins ... x_ger.html
There are also dedicated centers of cryo in Italy and France, I am pretty sure they are fairly expensive. We too had to pay for all Ivan's lung surgeries and cryoablations in US by Dr.Littrup.
You can also see https://www.cirse.org/ and may be ask them if there are any members in your country or close by

[MartinBube]

Thank you Olga, just for my understanding Interventiaonal radiologist is related with Cryo or similar interventions that I might need?

thank you

[Olga]

Interventional radiologists perform image guided local treatment invasive (such as cryo, RFA, LITT etc) or non-invasive like High-intensity focused ultrasound (HIFU) may be others I was not keeping up with the new ones lately. Our point of reference was Dr.Littrup as the most advanced cryo dr in US, that we would fly from Canada to get treated by him specifically as in the experience is the key. He was one of the initial developers of the technology decades ago and could do the locations other drs won't touch.
In general you would start from contacting the https://www.cirse.org/ to find out if there is their members in your country. I usually see if there are publications on the Pubmed by the drs I am looking at, like studies. The experience of procedures performed has to go over 100 at least. If you can get that number? Also there is going to be their conference soon and usually the proceedings are interesting in practical terms who does what and what is proven to work. Although these places are usually more expensive, and you should ask for the quotes upfront, they are very different from country to country.

[MartinBube]

Hi Olga,

I have contacted both Dr. Vogl and Dr. Drewes, both of them have asked for CDs, and after I sent them the proposed some options

Dr. Drewes sees 5 nodules in my lungs out of which only one has growth over the past years. he proposes to first remove the one that grows with video-assisted laser-assisted metastasectomy and after histological result we would than make plan for next (thoracotomy and laser resections). I aksed if we can talk for the details because I have some questions such as why only one and doing histological report and how much recovery is needed after all these interventiaons or if I should wait some time more if anything else pops up.

Dr. Vogl has suggested that we do regional chemoperfusion TACP and TAE TACE. Hi did not gave me any other details. I will check again why this and not cryo or other method for removal of the nodules as I know that chemo is not at all usefull for ASPS

On Monday I have Brain MRI just to be sure what is the situation there

[Olga]

It seems that Dr.Drewes is not sure the nodules are ASPS and want to get the firm proof before subjecting you to a full size thoracotomy. Which is a very painful surgery. What size is the biggest one he can see (the one that grew?). Can you copy-paste this part from the answer. How expensive is it.

Dr. Vogl wants to treat some area with the regional chemotherapy. Not a single met but the area where he sees most of them hoping it will kill the other small mets that are in the same area. The smaller ASPS mets might be chemosensitive if the chemotherapy is delivered right to the point. Bigger ASPS tumors are not chemosensitive because their blood supply is chaotic and some areas of the tumors even get necrotic due to blood not getting there. Small mets blood supply is simpler and more regular. On the other hand we do not have any information about this procedures use in ASPS.
There are numerous other options that need to be evaluated too.
Have you consulted re. Keytruda/found Merck office in your country? We can ask Ivan's oncologist if she could confirm to your oncologist that Keytruda was effective for him and other ASPS patients. If your oncologist is not cooperative, contact Merck directly just to find out what the situation is.
Have you tried to find a cryo dr in your country?
there is also an option to treat one of the lung mets with the radiosurgery combined with the immunotherapy treatment. We can provide an information about the radiosurgical places we had the contacts with, in Frankfurt it is SAPHIR but you will have to ask if they might be able to provide Keytruda to you as well. It is expensive. But some our patients only needed few treatments of Keytruda.

[MartinBube]

Hi Olga,
Dr Drewes did not wrote the size but from my last radiologist I have the report that this nodule in 2018 was 2mm and in 2021 9mm. I asked when can we have more detailed conversation either online or me to visit there because I also have some questions. Why is he suspecting that is not ASPS? why not operate also the other nodules.

Regarding Keytruda I'm still searching. My oncologist is not very cooperative. We talked on the phone and she says that the nodules do not mean nothing and suggests that I do PET Scan which makes no sense. I will check some other options in the next week and will see. Cryo in my contry is not available so I started checking options in the region but as I'm afraid that I'm just loosing time.

My concern is if I should be fast and do what Dr. Drewes proposes or check the possibility for cryoablation also. I will aks Dr. Vogl about this option and contact SAPHIR. Do you have any preferred contact there?

thank you

[Olga]

Our contact at Saphir was dr. Oliver Blanck, but he is the lead physicist there, not the med dr but you can ask him, he is a very kind person oliver.blanck@uksh.de
ask Tanja, she is the mother of our late pediatric ASPS patient Saskia for more info she was there.
https://cureasps.org/forum/viewtopic.php?f=94&t=2044
They do the high end radiosurgery and might be able to treat it but I am not sure what is your best choice and how these options compare and I do not know the costs.
There are few advaced cryo teams in Europe that are mentioned often during the conferences.
I am posting few names for your records (from Europe I found them in EU ablation conference for this year and Dr.Aoun we know him)
Thierry de Baere MD, Interventional Radiology Department, Gustave Roussy —Cancer Campus, 114 rue Edouard Vaillant, 94805 Villejuif, France
Frederic Deschamps MD Department of Radiology, Gustave Roussy—Cancer Campus, Villejuif, France
Hussein D. Aoun MD Department of Radiology, Karmanos Cancer Institute, Detroit, Michigan
Giovanni Mauri Divisione di Radiologia Interventistica, Istituto Europeo di Oncologia, Via Ripamonti 435, 20141, Milan, Italy. vanni.mauri@gmail.com

Cryoablation is the less damaging option for the lung tissue/less pain. But it can not be used for the small mets and if the dr is not experienced enough the lung can collapse, it is a serious complication that usually is fixed but takes time and money if you are paying.
Radiosurgery is the less traumatic option. But it can damage close located structures.
Open surgery with the palpation is the most accurate and durable option. But it damages the lungs a lot.
Immunotherapy is the most promising option as it can find the mets that are not visible on the scans. But it is a most expensive option, and also its side effects might be severe as immune system can attack the body. If your oncologist is not interested in treating you, change oncologist. Contact Merck first and find out if Keytruda is available in your country at all, for any indications.
When the treatment is chosen, getting the best most experienced drs in the field makes the problems less probable.

[MartinBube]

Hi Olga,

For me personally also is very traumatic that I'm not sure what is the best option.

For now what I think is the best way is to go with Dr.Drews, remove the nodule that is growing. In the meantime check for options for Keytruda , here or in the region and have it as back up before I do any open surgery. I found Merck office in Bulgaria and Serbia. This or next week I might travel to Belgrade to discuss with more experienced oncologist and will for the options and will contact Merck directly.

I thought that the method of Dr. Rolle causes less damage to the lungs and some people here have operated so many mets so I would use it until whatever pops up is still possible to be surgically removed, and whenever not possible to try the Keytruda.