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

[Olga]

You probably already know that a Pseudoprogression means there is no progression but the immune response is seen on the scans as the increase in size or the appearance of the new mets due to an inflammatory changes surrounding the tumors. You most probably have already had these newly mentioned mets in pancreas and elsewhere but they were not visible on the scans and are more prominent now when they are inflamed.

[arojussi]

Panceas met at least was visible before.

[arojussi]

Heartrate 69. Blood pressure 108/69

[D.ap]

Hello Jussi
HR and BP look excellent . : )
How is your bw looking in reference to your pancreas ?
No infection indications?
Posted this back in 2017 of metastatic ASPS of the pancreas

http://www.cureasps.org/forum/viewtopic.php?f=81&t=1366

[arojussi]

Before I used to believe that immunotherapy should be saved for last resort. It is fact that immunotherapy usually works better against tumors with high mutational burden and here is correlation between cancer`s mutatioal burden and spread. Now as more asps-patients have experience using immunotherapies it looks like patients who have metastases in unusual places dont react better than other asps-patients. High vascular activity in asps might be one of the reasons explaining immunotherapy`s success in asps. It doesnt matter why it works. Point is it works.

[Ivan]

Jussi,

Have you considered a fecal transplant? I know it's a long shot but perhaps the microbiome you have isn't allowing pd1 blocking to function optimally. I would consider it personally.

[arojussi]

Obviously if I am not responding fecal transplant would be only option, that I can think of. Interestingly 31 hours after doctors`s appointment my heart started beating like textbook and my heart has been beating normally ever singe. Of course we dont know how my heart would handle stress as I keep my heart rate under 100. Still able exercise very very carefully. So something might be happening and fecal transplant will completely change my gut microbiome , so it would be very risky based on one ct 2moths after starting immunotherapy.

So either immunotherapy is working and we just scanned when inflammation was at it`s beak or asps is growing and we need to change my gut microbiome immediately. Difficult question. As heartrate suddenly turned lot better days after scan results I consider pseudoprogression to be slightly more likely option.

[Ivan]

I have a response so if you want to try, let me know. I don't think it would completely change the microbiome, more like increase the diversity. Which is good.

[arojussi]

Definitely. As today afttetnoon as I woke up my heartrate was 77. This was before any betablockers. So it still looks like my heart`s workload has improved radically. So I dont want to do any drastic interventions at the moment. Making changes in gut microbiome would be drastic change. Of course we rehink if heart start to detoriate.

[Ivan]

Ok, got it. When are the next scans planned? I think it should be pretty soon.

[arojussi]

Echo with each infusion for now.

[Ivan]

I mean when is MRI? Echo might show a drastic change only.

[arojussi]

Cardiac mri isnt arranged yet. Have to get that ordered.

Echo will show if effusion has returned. Basically immunotherapy would have eliminated effusion without affecting tumor that is causing the effusion. I stopped cediranib for radiation,, so it is not the reason. Disappearance of effusion explains why my heart functions relatively normally now. Even with cardiac mri it is difficult to say if tumor is inflammated (pseudoprogression), dead (necrotic) or truly growing. Yesterday my heartrate was 88 and I ruined my day by obsessing over it. 88 is just lille above normal and today my heart functions just like last week.

[D.ap]

When I started bp Med , I was told to take my bp once a day at the same time.to keep my anxiety level down .

What’s your docs instructions for taking your pulse ( HR)?
After first dose of propranol ?

Are you still on 10mg x 2 a day?

[Ivan]

Get the cardiac MRI soon. Definitely within a month. Order it ahead of time, as it can take quite long to arrange that. Unless you guys have much better availability here. If it's not shrinking, time to change something - agree?