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

[arojussi]

And even that stubborn professor is placing high priority in controlling my neurological symptoms, so it will be really suprising if they decide to do nothing except continue sgeroids, steroids cant even control my symptoms. We will know tomorrow.

[D.ap]

Jussi
It's good to hear that your oncologist is making a case on your behalf. Kudos to him .

How's your stomach doing for you?
That's why you were taking cortisol in the first place , right?
The reason I ask is maybe you could make a case for surgery as there are medical papers written on the cons of using high doses steroids when on immune therapies .
However if need be for your swelling you need to follow the doctors instructions . He knows better than myself .

I've found this one however I know there are more out there

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4586093/


"Treatment of immune checkpoint inhibition-related autoimmune disorders with high dose corticosteroids (HDS), which is the usual therapy for autoimmune diseases, would be expected to result in immunosuppressive effects and paradoxically may counteract the anti-cancer activities induced by immune checkpoint blockade. "

Even though you've discontinued Keytruda , it's a known fact that it lasts for months after the discontinuation

[arojussi]

Brainsurgery next thuesday.

[D.ap]

Jussi
Excellent news ! Now , time for next task , to do that fun thing for yourself .

[arojussi]

I will. I can enjoy little things like good book. So I never feel too miserable when I am recovering from surgery.

[Olga]

Jussi - congratulations, it is a big win for our team.
Please do not be to cynical re. doctors changing their decision under the pressure to be accountable, it might be not what it seems. Patient determination/energy to fight for survival and his support network are now considered to be one of positive deciding factors when more risky/expensive for the health network treatments are considered. It means that the patient had more health resources than it may look from the standard point of view.
Now re. time left till the surgery.
Try to gain more muscles mass, find some type of exercise you enjoy preferably outside, more walking less sitting or lying down.
Discuss what can be done to test the removed tumor tissue re. possible immune therapy response.
Discuss with the oncologist an article that Deb posted re. cortisol possible intervening with Keytruda immune response, although as I understand it was a short period of time you took them both, and the scanning was done in the beginning of that period or even before?
Did they find a radiosurgery completely effective for the all irradiated small mets? What was the size of the mets effectively treated?

[arojussi]

Biggest met treated was 2.5 cm to my surprise it still looks dead. Cerebellar met was 2.3 cm It is only one looking clearly alive. All other tumors turned less clear and don't look like consistent mass anymore, Looks like only 1-2tumors escaped from radiation. Srs control rate is 70-90 percent, so this is very good. There is few new nodules, but controlling them with srs is easy as long as new mets keep appearing slowly. There is no upper limit of brain tumors, that can be treated with srs. Of course more radiation is always more brain damage, but radiation is still better and more save than letting tumors grow. It will be interesting to see what pathology says about my cerebellar met, I hope there is some kind of mixture of living cancer, inflammation and necrosis.

I will stay on cortisol until surgery. I try to make sure brain swelling doesn't kill me before surgery. After surgery I try to quit cortisol fast. I am on 3 mg of dexometasone now. In theory it makes perfect sense, that cortisol would take away benefits of immunetherapy. But as far as I know immune system is way more complex and evidence supporting idea that cortisol dampers effects of immunotherapy is very limited.

I know this is big victory and I am happy about it.

[arojussi]

After brain surgery i think we have other scan of mandible to determine if it is met or just some kind of complication from radiation damage and or tooth inflammation. If it is met we could treat it quickly with cyberknife in Finland. Of course cryo is better, but we could by time with srs. We have to ask this from dr. Littrup. If he feels small brain tumors don't pose a danger, then we could just travel to Detroit before going to China for gamma knife. After bone met is ablated, we should have plenty of time to deal with my smaller brain mets with gamma knife. I am writing this down here because it is possible that I cant think straight after brain surgery. Of course in time brain will adapt, but we must go ahead with local treatments now, even if I cant think.

[Olga]

Dr.Littrup will review the scan you already had and sent to him soon and will let you know what it is. We found his reading more accurate than other radiologists.
I also have a question about the plan going to China for the radiosurgery on the small mets. The neurosurgeon that reviewed your scan last said that the radiosurgery was close to 100% effective for the small brain mets - I am not sure what reason they could find to deny you from having the radiosurgery done locally at the same place that done it before but covered by the government? It is really to early to think about it and all will depend on the brain surgery outcome, but just saying:)

[arojussi]

Yes radiosurgery for brain mets can be done locally. But universal hospital only has cyperknife and only about 5 years of experience using it. Private hospital docrates has lots of experience, but their machine rapidarc is worst possible for small brain mets. Only positive side of rapid arc is, that it can be used for bigger mets. It delivers waster treatment time, but ablation with linear arc fails more often than gamma knife treatments. Gamma knife results in significantly lower normal tissue radiation dose. Doctor we contacted from China seems very experienced, so even if we could have stereotactic radiation here in Finland I would still choose center in China. Universal hospital strongly recommended whole brain radiation for me year ago. And knowing, that asps is very radiation resistant and brains are very radiation sensitive I strongly question their ability to treat multiple asps brain mets.

[D.ap]

Hi Jussi
Can you hire doctor from China ie consult to talk with your local state radiologist and give them stats to administrate for the computerized dosesge?
It's a ways away so can think of what to do as if can be performed , can be a monetary savings not to mentiion a lettle less travel on your and family ?
Just a thought ?
Glad you are being proactive
Night
Debbie

[Olga]

Debbie - it has to be done by the most experienced doctor, and consulting does not work - they need to have a very large first hand experience. Also Gamma Knife (gamma rays) and rapid arc (Linac based X-rays) are different hardware units:)

[D.ap]

Good point , Olga
Experience is as important as the technique being used.

[arojussi]

Brainsurgery went well.

[Olga]

Welcome back:)