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Re: Jussi from Finland - Dx 2008
Posted: Fri Jan 25, 2019 1:31 pm
by Olga
It is still a very open question re. what locations are the best for the abscopal effect creation. What about treating some brain met? SBRT to some that is causing the clinical problem might be easier to get approved for.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 5:04 am
by arojussi
As mandibular met just started to cause severe bleeding having it targeted shouldnt be too difficult it also very sensitive and painfull. Problem is even if we can achieve abscopal effect it can be difficult to get more immunotherapy. After 6 moths there is little but almost certain disease progression, so we must first achieve some shrinkage, before it is reasonable to even ask more opdivo.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 6:16 am
by D.ap
arojussi wrote:Last infusion was on friday a week ago. Scan next thuesday, so if immunotherapy caused swelling it hasnt settled before scan. I have been on immunotherapy little over 6 moths. As there has been similar case where after 6 moths it wasnt clear if there was treatment response, so they re-scanned again after six weeks of drug holiday and saw response. So I would like to keep taking avastin and cediranib for symptoms and re-scan and have cardiac mri to confirm disease progression in like 6 - 8 weeks. And then discuss about continuing immunotherapy based on scan results.
Jussi
I’m confused..did you have a scan this week? Tuesday ?
What scan will you have next week?
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 11:51 am
by arojussi
Well had to measure rest and walking heart rates to know if I need to change pazopanib to cabotsantinib. Well at rest lowest heart rate went was 67. During walking it stayed between 78-97. And after it went down to 73 in few minutes, so I guess I dont have to change pazopanib, while waiting for more cediranib. I checked cabotsantinib side-effects and really don't want to try it. Actually these heart rates make the whole heart tumor progression sound weird.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 11:57 am
by arojussi
scan was this week thuesday and infusion was friday before that. No scan is planned for near future.
Of course we are planning for radiation for mandibula lesion for near future.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 2:00 pm
by Olga
Your heart rate looks pretty good to me - resting and active both plus the return lower fast. I am not sure about the heart progression either. Have the mandibular met treated soon - SBRT? cryo? are brain mets stable/shrinking?
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 3:25 pm
by arojussi
In brains few mm growth. Little but it is there.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 3:32 pm
by arojussi
In mandibula there was met surgically removed long ago in summer before gamma knife. Surgery was almost certainly with positive margins, so microscopic cancer cells can start growing now or microscopic cancer can swell, because of immunotherapy tumor cells coming visible in the scan.
Re: Jussi from Finland - Dx 2008
Posted: Sat Jan 26, 2019 3:44 pm
by arojussi
When immunotherapy was started smaller brain mets started shrinking and bigger started growing I am relatively optimistic still, that there was response in the brains it just looked different depending about tumor size.
I hope that if we achieve response by immunesystem either by just waiting or radiating some tumor I hope oncologist will reconsider continuing immunotherapy. As pericardial effusion disappeared after subcutaneus met was radiated, there obviously was some weak response by immunesystem during that time.
Re: Jussi from Finland - Dx 2008
Posted: Sun Jan 27, 2019 1:32 pm
by arojussi
Today heart rate dropped to 70 less than 15 minutes after a hour of very slow walking.
Re: Jussi from Finland - Dx 2008
Posted: Sun Jan 27, 2019 1:33 pm
by D.ap
Hi Jussi
I was researching icis and effusions and found this write up on blockages in the lungs causing effusions ( tumor increases) and 2 cases of Nivolumab ,resolving itself.
https://www.frontiersin.org/articles/10 ... 00004/full
Re: Jussi from Finland - Dx 2008
Posted: Sun Jan 27, 2019 1:37 pm
by Olga
No Deb, in both cases from this article there was an increase in pericardial effusion on nivolumab. In Jussi case there was a significant decrease from the very beginning on it.
Re: Jussi from Finland - Dx 2008
Posted: Sun Jan 27, 2019 1:41 pm
by D.ap
Hi Olga
I was just looking back at when the effusion began and thinking it began before Opdivo infusions ?
http://www.cureasps.org/forum/viewtopic ... ial#p11926
Also Jussi , you mentioned back in April you thought it had been there prior ? The pericardial effusion?
So the question would be did it resolve by way of Opdivo , and or cediranib or the combo is my thought.
As it wasn’t going away prior to these meds being used.
I maybe way off base . Just a thought :)
Re: Jussi from Finland - Dx 2008
Posted: Sun Jan 27, 2019 2:48 pm
by arojussi
Pedicardial effusion most likely caused by cardiac tumor, so it has been there long before opdivo was started. When I had radiation for subcutaneous met, cediranib was on the break. And it was during this time effusion disappeared. Now there is little increase in effusion and tumor size. As adding radiation obviously helped last summer best idea I can come up with would be to radiate mandibular lesion to achieve abscopal effect and hope it makes it easier to immunesystem to reconise cancer.
Re: Jussi from Finland - Dx 2008
Posted: Mon Jan 28, 2019 7:03 am
by arojussi
Well radiation planning starts tomorrow. There has been several case-studies about radiation achieving abscopal effects even after immunotherapy alone failed. This is not as certain success as gamma knife was, but in theory this might work.