Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[Olga]

The other option is to cryo with the intratumoral injection of ICI drugs in Span where Seth is now getting treated. I am wondering if they would agree to cryo a pericardial met even if incompletely. Or if you have any other proven met that could be treated.

[Olga]

or may be a radiosurgery to any recurring brain met, locally under the local insurance as a palliative treatment. Do you have any new ones?

[arojussi]

Thanks again. Radiating brain mets is definitely safer than radiating heart. China can treat brain lesions. Few new ones.tiny old ones are responding and one big one treated before is growing and there is edema around it. Could be pseudoprogression or disease growth. As edema came back at the same week as neutrophil lymphocyte ratio dropped to 2, I consider pseudoprogression as most likely explanation. Of course radiation doses to kill brain tumors and radiation doses for abscopal effect are very different. As it only takes one day to fly back from China it is theoretically possible to have infusion around 2 days after radiation. In Finland best machine available is cyber knife, so having radiation here will result in bigger brain damage.

[Olga]

when treating only one recurrent previously treated brain met, there might be not that much difference (if any) between the CyberKnife and GammaKnife volumetric covered field/overall dose (and damage) to surrounding tissue difference. It is not like your case when you had to fly there to treat couple of dozens of mets.

[Ivan]

Do you have advanced machines which can correct for breathing or even take heart beat into account for radiation?

[arojussi]

Dont know.

[arojussi]

I actually havent studied options to enchange immunotherapy response very deeply lately. As even if heart tumor looks bigger heart function has improved radically. Now the amount of calories I burn at crosstrainer is almost as good in 20 minutes as it was few moths ago in 40 minutes and my rest heart rate is often below 70. Unless my nerves get to me. Also subcutaneous lesion started to shrink and skin around it is red. Possibly t-cell activation. If this subcutaneous lesion is indeed asps and not acne all is going well and there is no resson to permanently damage my coronary arteries with radiation. I simply find it hard to believe, that giant heart tumor wouldnt have any effect to heart function as it grows. Most likely explanation I can think of is that tumor looks bigger, but it doesnt push my heart shut as much as it used to.

[Olga]

the subcutaneous lesion - is it the one at the back that they wanted to resect? Have you done the ultrasound for it, it shows the superficial sarcomas pretty well and can give an additional info if this is asps

[arojussi]

I could swear, that I saw this lesion first mentioned in one of the heart ultrasound report, when I was looking for info about my white blood cell counts. My father is certain, that I must have red thoracic ct report as cardiologist only looks for the heart. Yes this is indeed the very same lesion they wanted to remove. It started from 15 mm and now is lot softer and lot more flat and measures 13 mm. So shrinkage can be just error in measurements. It is not rosacea pimple. I have had cystic acne ever since my interferon experiment and as lesion is in my back where I have lots of acne I strongly suspected acne until lesion and skin around it turned red and lesion shrunk a little. As acne turns red it grows, so maybe this is a tumor. If similar reaction is happening in my heart tumor it would explain why lesion looks bigger, but is disturbing my heart a lot less, because heart tumor is turning softer, it cant push my left ventricle shut like before.

[arojussi]

As cystic acne and asps are both higly vascular lesions it is difficult to notice the difference.

[Ivan]

I find it hard to believe that there is no way to distinguish acne from an asps tumor. Have you consulted the radiologists on this? Perhaps we are overlooking something. It's an important piece of data which needs to be interpreted correctly.

[arojussi]

Biopsy would be certain. But as I have another set of scans in near future we will know soon enough anyway.

[arojussi]

This wouldnt be the first time when my acne is confused with asps progression. Now as lesion is shrinking and skin around it is turned red, if it is asps it is responding and all is going well. So if scans show clear disease progression, then we need biopsy. Biopsy is only certain way as it is very difficult to differentiate two vascular lesions from each others.

[jcs2007]

Hope the scans give you some needed answers. My son had a concerning spot on his knee and back several years ago but it turned out to be acne related. Update once you get more news.

[arojussi]

So no new lesions. Subcutaneous lesion has collapsed. Heart met stable. In the brains everything shrunk. In lungs mixed response. Some lesions appear bigger some shrunk. Considering, that heart rate is below 70 and effusion is gone I believe,that heart lesion is just necrotic tissue and lymphocytes. If I need ablation for lung mets it is just another day at the office for me.