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

[mikko]

Jussi´s first ever proBNP value was taken in December 2017 as he started Cediranib. It was high but it soon got lower and in April it was nearly normal but it started to rise again after that. This week´s proBNP value was half of that value in last December The MRI in April was stable the progression was found in June MRI. So I believe the heart met was responding to Cediranib.

[D.ap]

Morning Mikko,

Is the tumor in the left ventricle ?
Was that where a tumor had been removed laser wise by Dr. Rolle?
Extending our love from our family to yours , as you all work through this problem.

[arojussi]

One more thing, my heart met cant be seen in mri and with ct it was noticed when it was 7 cm. So I would like to use caited scan to follow my progression with treatment. At first doctor suggested ct, because mri is useless heart simply moves too fast for regular mri. There is growth elsewhere, but it is clinically meaningles at this point. Having scan that takes heart movements into account shouldnt be impossible, but I have no idea how much work it takes to find the right machine for that.

[arojussi]

Tumor comes from left antrim and extending to left ventricle. Looks like it comes from heart. Lung met that has grown to heart, would be unlikely to react to immunotherapy. As my asps was in lungs, brains and bones with 1 mutation, but met growing in the heart most likely has more mutations. I get to test my theory, that asps that grows in unusual places (other than lungs, brains and bones, some studies also mention liver) reacts better to immunotherapies as mutational burden is most likely higher.

[D.ap]

Hello Jussi

I was reading and article where by an “Mri called a Dynamic contrast-enhanced magnetic resonance imaging (DCE-MRI) is used as an evaluation methods to see how well anti-angiogenic agents, such as anti-VEGF antibody and tyrosine kinase inhibitor, clinically are delivered to tumors.”

Maybe this could be suggested ?

Here’s the article

“Increase in tumour permeability following TGF-β type I receptor-inhibitor treatment observed by dynamic contrast-enhanced MRI”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2788254/

[arojussi]

I think simpliest solution would be using same imaging that Ivan is using for his heart mets. There is no reason to reninvent the wheel.

[Olga]

Ivan goes to scan his heart met to the specialized cardiac center we have in Vancouver, they have a dedicated cardiac MRI unit. We consulted a surgeon there and they keep the follow up at the same cardiac MRI scanner as they say it has the best visualization for the heart. It was not visible on the chest CT with the contrast. Echocardiography was also done in the beginning of the investigation and is a valuable source of the information.
We had a case of the left side cardiac met when it was a direct extension from the lung met trough the wall of the pulmonary vein (if I remember correctly - Jussi - does it make a sense from the point of the anatomy? correct me if I am wrong). The met can be actually floating on a stalk leg and could be removed in some cases. I would ask the cardio surgeon to order the necessary scans and review the case.
There is a problem with starting immunotherapy with that size of cardiac met - if it responds, it may swell initially and block the flow, so you have to have a cardiac surgeon familiar with the case close by - in case the emergency surgery is needed. We did not have this with Ivan, and Brittany Syllivan did not have either, you can read her blog going back 2 years to the beginning of her treatment here
http://johnandbrittanysullivan.blogspot.com/
I read it all and it really helped me to survive during the first few months of Ivan's treatment with the cardiac metastases.

[arojussi]

Thanks very much again.

[Olga]

About the other case I mentioned that we had here before - they were able to have a surgery, but it was before of the immune checkpoint inhibitors approval so they had no other choice. Ivan's bigger met was in the inter-ventricular septum and therefore non resectable.

[arojussi]

So looks like my radiation will be regular and not stereotactic, because I left universal hospital 2 years ago and cityhospital doesnt have cyberknife. Only fifference is that regular radiation is not mm accurate , so I will have some skin damage from radiation no big deal.

[Olga]

Ivan's radiation treatment was also done not on the CyberKnife unit but on some other stereotactic capable Linac based unit, very accurate as well. What is the radiation treatment plan? Ivan's was 4 treatments by 8, every other day

[arojussi]

We simply try to do exactly same thing as Ivan did, because our situations are very similar and he had such amaxing response. Planning of radiation is next week. We suggested 8 gy four times.

[Olga]

The timing for the radiosurgery is the same important as a dose. I was reading extensively the cases of the registered abscopal effect, and most of them were achieved when the radiation was given at the same time as immunotherapy - right before or right after. We managed to schedule them at the same date. Ivan had a radiation treatment with the second keytruda because we were not able to schedule it with the first one, and decided not to rick having it in the middle of the cycle as the immune system can also give a very wrong signal amplifying T-regs. I also reviewed the evolution of the clinical trials and noticed that before they did not really pay the attention to timing but now they moved to having it in the close proximity of the ICI drugs, probably felt that it has a better chance.

[arojussi]

My dad insisted that we have immunotherapy and radiation at the same day. I trust that you did all research possible, before deciding to have them at the same day and results were imprresive, so we just try to copy you.

Also my decision to continue cediranib for now: as cediranib can help with swelling like cortisol with lesser side-effects I will continue it. Diarrea can still be controlled with dried blueperries, so side-effects are tolerable. I will stop cediranib if and when we know that immunotherapy is working. By the way my subcutaneous lesion feels little smaller already, but I might just imagine it as immunotherapy usually takes longer to kick in.

[D.ap]

Thanks Olga and Jussi for all this information .
Its what is going to help to make ASPS history , one day . :)

Jussi , I don’t feel it’s impossible to think that you are seeing subcutaneous reduction.
We by chance had a scan with Josh after 1 month of being on Opdivo ..MRI of the brain , mainly because of his headaches . His skull tumor was already being seen to be reducing :)

http://www.cureasps.org/forum/viewtopic ... 1297#p9919


“We began July 27th ( 2016)!with 144.2mg and have been on an every 2 week schedule since then.
We did have a brain MRI in August as Josh was having slight headaches and the scan showed the beginning of reduction then.”