Martin from Macedonia - Dx Jan 2015

[D.ap]

Hi Martin ,

I’ve been following your posts and wanted to wish you the absolute best of luck in your pursuits!

Your research and questions are all on point .
Question, does your lead oncologist have any insight to your incredible history of slow progression and low tumor load ?
I look at your pathology report, https://cureasps.org/forum/viewtopic.php?p=8025#p8025, compared to our son Joshua’s https://cureasps.org/forum/viewtopic.php?p=8012#p8012 and still wonder about mitotic levels being a good pulse of the future aggressiveness of a patients metastasis disease.

[MartinBube]

Hi Debbie,
My current oncologist is the worst part of my story. I’m the one treating my self and seeking all what I need based on what I have learned here In the last 7 years.
Unfortunately on the Oncology Clinic here she is the only one dealing with sarcoma. If I was on her place, doing what she does I would have been a little bit more interested for my patients especially with such a rare type. But it is as it is so thats why I’m trying to hear and talk with more people and make the decision.
Hopefully next week I have online meeting with more experienced oncologist and the week after I have arranged a meeting with another local oncologist that has applied Keytruda to patients but different types of cancer. Anyhow the idea is to see what he knows and if necessary can I apply for Keytruda.
After that I need to sum up and decide.
Latest is that Saphir Radiosurgery has asked for CDs to evaluate but Im not sure that RadioSurgery will be a benefit with asps.
And still waiitng reply from another center in Italy for cryo.

[Olga]

In general radiosurgery has excellent results in small ASPS tumors. The same as the cryo or surgery, when done by the very experienced drs using the best technology in their chosen field.

[MartinBube]

Hello Everyone

In the last week I've had separate discussions with Experienced oncologist from Vienna University which specializes in Sarcoma and Saphir Germany.

Oncologist opinion
- After review of my results scan and pathology report he is suggesting that I do another scan in May to review the growing nodule, if this nodule is growing again he is suggesting surgical removal but with possibility to do Histological report because hi is not sure and wants to verify that this is asps before I do additional surgery. He was not sure if with laser this can be achieved but Dr. Drewes said that he can because also he wanted to preserve tissue for analysis.

Saphir opinion
we received your CDs and the report. Also I checked the Scans. As described in the report of your Scans there is one nodule With slow Progression (left lung, paramedian, 9mm). To treat this nodule via CyberKnife could be an option.

For Treatment of such small nodules via CyberKnife we use a in-time tracking method – so while You are lying on the Treatment Couch we use orthogonal x-rays to see and track the nodule. Unfortunately, it is not clear if this nodule is suitable for tracking (because of its small size and its location near to the heart (in x-rays overlay-effects occur).
So far we have to options:
1. Control CT Scan in 6 months and assessment of growth for all nodules. If the suggested one is bigger (like 15mm) tracking is more easy. I believe, this sounds weird to you, to let a nodule grow, but actually this is my recommendation.
2. You come here for a first check-up if treatment is possible. If it is possible, we can begin the whole procedure, if not you have to go home. Actually I would say there is a possibility of 50:50

So based on this I will do another scan in May on the same CT and see the result and decide how to move forward.

Few options that are on my mind:
I will discuss again with Dr. Drewes if the growing nodule can be removed without doing full thoracotomy because this was his first proposal in this way analysis can be done.

Cyber knife would be a less invasive option but not sure if will work on bigger nodule, I'm not sure what is the reference for small and big for asps.

Next week I have a meeting with a new oncologist here that is willing to view all my results and he is the one that has already applying Keytruda but for different types of cancer but will explain to me which are the options and if I need what would I need to get in the program off label.

The cost for Keytruda here if you need to pay on your own is 5200 euro per cycle (three weeks interval)

As soon as I talk with him I will update

[Olga]

Thank you for an update. The understanding of your situation improves. It seems that the location might be an issue with the radiosurgery. The advice to wait till May and rescan is reasonable. The best size for any ablation modalities is between 10 and 15 mm, large enough not to miss but small enough to be reliably ablated completely.
So in the time you are waiting for the next scan, please find and consult a good quality experienced cryoablation dr. To have the complete picture of what options are available. Dr.Littrup can do virtually any location and done the close to heart mets for Ivan too. But to have treated by him you will have to travel to US, I am not sure how hard it is to get a visa (ppl from drs office will give you a letter), plus the price of flying etc. There are advanced cryo drs in France and Italy, and should be someone in Germany too but I do not know.

[MartinBube]

Hi Olga, I'm still searching for Cryo options. Also will see after the scan in May if RadioSurgery would be the option. I think fro radio surgery the bigger concern they have is that fixing the nodule for cyber knife is problematic because of the small size, if size gets bigger its easier to have a good target for treatment

While talking with oncologist I have the feeling like I'm trying to convince them that this is asps met and they keep telling me especially the last one that he struggles to believe that this is asps and that he had a lot of cases like this where other type of benign tumors can grow like this which just confuses me more. The oncologist from Vienna even told me that with the slow typical single mitosis (up to one / 10HPF) in the main tumor he is not sure at all that this can be asps which I do not believe honestly.

I really need to try to remove it surgically to do the analysis. Dr Drewes has replied to me that he looked at the CDs again and believes that LAPM (not sure what this is) per VAT on the left side actually possible for the growing nodule, so I might do this after the next scan.

[Olga]

LAPM is the laser assisted pulmonary metastasectomy.
It is a hard choice. What would be the argument re. possible removing it for the tissue sample versus destroying it? I understand that as a result you will know what it was, but how would it affect the management plan? Any other actions will be undertaken only if the other stable nodules will start to grow regardless of what this nodule it. Have you asked Dr.Drewes what is the cost for VATS LAPM?

[MartinBube]

Hello Ogla,

somehow I missed to answer on the last post.
The reason for removing vs destroying is to verify if it is asps. if destroyed they would now know in case all rest remains stable and no other nodules occur.
Currently I have scheduled a CT scan in beginning of May and after that I will make a plan.

there are 2 options:
- All is stable and in this case probably again in 6 months I will recheck

- there is growth meaning that I will have to do something with the nodules. if Radio Surgery is possible great, less invasive and with good chance for success. if not I will need to do VATS or Cryo.
For cryo I still do not have found options

[MartinBube]

Hello everyone,

I’ve done a control CT scan 2 weeks ago and this week Ingot the results.

After detailed comparison of my last scan in November seems that all is the same.
First I picked ip the results on the radiology clinic where the result was a mess. Reported growth pf nodules and New nodules.
So I tried to stay calm as I usually go and see few radiologist before I make any conclusion. I spent almost an hour with one of the radiologist that I trust and we compared a lot of details, even older years.

The only nodule that has changed is the one of 10mm which can not be seen before 2020. Unfortunately the CT images before 2020 are not done in the same way and my radiologyst os not sure of maybe it was missed before on the scan it self. I do not know how to explain but he mentioned that the steps pr pitch frome slice to slice is not the same.

I’m looking now to go for a 3rd review just in case and probably will send CD to Dr. Drewes for his review as we agreed to be aligned in case surgery is needed after this scan.

[D.ap]

Hello Martin ,
The results sounds like good news .
What slice thickness was the CT scan ? What increments were the slices ?

[MartinBube]

Hello Debbie,

As far as I know last one is done with 1mm, November 2021 3mm.

The one in 2019 is also 3mm but when they scroll over the image, seems like the jump from one to another view is bigger.

[D.ap]

If the increment was greater than the slices , it sounds like the resolution may be lost to a degree?

https://www.materialise.com/en/faq/what ... -increment

[Olga]

Well, basically for the nodule to be not seen before 2020 and now its at 10 mm, it would mean it was smaller than the slice size - 1-2 mm - and grew rather fast during 2 years to reach 10 mm. Hard to find other explanation though.

[MartinBube]

Hello everyone,

Some time since I last posted. I just picked up the result from my last scan chest abdomen pelvic and brain.

New growth was noticed on one of my lung nodules from 3mm in Dec 2022 it has grown to 10mm Dec 2023. I have 5 nodules and now 2 are 10mm. I’m very worried and not sure what the next step should be. Im going to the oncologist this or next week to hear his opinion. When I went this year to schedule the scan he said why are you still coming this is over a lot of people have nodules dont worry but I guess this never ends.
Radiology guy suggested another scan in 6 months. And then decide what to do next.
Locally i have i think option for cryoablation in case i need to do it or contact Dr. Drewes in Germany again

Everything else is clear. Its been 9 years since my diagnosis i do not understand how now some nodules are starting to grow.

[D.ap]

Hi Martin
Good to hear from you.
I’d consult Dr Drewes in Germany to see the likelihood of resection the tumors with the laser technique.
Are the tumors in both lungs or just one lung ?