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

D.ap · Post by **D.ap** » Mon Oct 29, 2018 8:29 pm

Jussi
If inner staph is present and no antibiotics are on board ,
Having a left ventricle tumor ,and possible molecule(infection ) float to a chamber is not a good idea .
My husband knows that first hand .

He had a congenital repair(rheumatic fever ) on his mitral valve and as a MUST has antiobtics before a simple teeth cleaning procedure . To keep infection/ clot from the mitral
valve .

https://www.chop.edu/conditions-disease ... rt-disease

arojussi · Post by **arojussi** » Tue Oct 30, 2018 6:03 am

Well oncologist said it is my decision. At the moment I am planning to do same thing as my first try to create abscopal effect. Initially I plan to go ahead with it, but stop the whole thing if there is any reason.if plastic surgeon isn't confident, that the lesion is met, then we back out, but if he feels sure it is met, then lets just cut it out as it most likely inst responding to Immunotherapy. (If I would be a doctor here I would be little upset, about patient changing he`s mind like this, but I would be more happy to find out that patient was confused, because he had just woke up from deep sleep instead of brain bleeding.) would really love to have same plastic surgeon, who removed my primary tumor decade ago, but as lesion is small and very superficial his skills really are not necessary here. Indeed I have removed similar lesions myself. So lets have meeting with the plastic surgeon on Thursday as planned and if he feels lesion is tumor let just remove it. If he is not certain lets just follow the situation.

arojussi · Post by **arojussi** » Tue Oct 30, 2018 6:53 am

They want to use general anesthesia.

arojussi · Post by **arojussi** » Tue Oct 30, 2018 7:33 am

I really don't understand why as local would be sufficient to allow removal of the lesion. They looked my ekg and my heart can handle it, but why add strain to my heart and body for no reason at all. As I said I would prefer local. Something they don't know. Of course general anesthesia guarantees, that I dont move during surgery, but that hasn't been a problem before. Have to talk to anesthesiologist before surgery, if he cant give valid reason for general anesthesia I am going to suggest, that we start with local and add general if needed. Any skilled doctor should agree to this, unless there is something I miss. There is no reason to add burden to cancer-patient`d body with general anesthesia, when local is sufficient. I suppose they just assumed, that I would prefer to be sleeping during operation and tested if it is save enough, which it is. But as I personally prefer to be awake and it is medically safer I don't see why any doctor would push for general anesthesia. Of course if surgeon feels he cant operate if I am awake for any reason I have to have anesthesia. But anesthesiologist main job is to keep patient alive during surgery and it is easier if I am awake.

arojussi · Post by **arojussi** » Tue Oct 30, 2018 12:25 pm

As surgery to remove non or slowly responsive lesion is good idea to create abscopal effect, there is no reason for general anesthesia, so I really dont know what to do. When trying to decide my heart rate rose to 105. As this scared me my heart rate rose to 120and above when moving. No chest pain or anything but rapid heart rate. Took 40 mg of propral. Heart rate slowly went down to below 80. So I hope it was just panick attack. As my father naturally got scared. He decided to cancel surgery for now. Another doctor`s appointment next week.

D.ap · Post by **D.ap** » Tue Oct 30, 2018 1:23 pm

Jussi
Truly sorry to hear of your anxiety attack.
Do something enjoyable in the mean time .
Looking forward to an update .

Post by **Olga** » Tue Oct 30, 2018 3:51 pm

Lets discuss this idea re. surgery to remove non or slowly responsive lesion to create an abscopal effect? Where did you see it? I have not seen it. It is not rare when people on immunotherapy treatment have some non-responding mets or even new ones. How about a biopsy and a cryo to that met? Or at least an ultrasound to see if this is indeed a met and then a cryo.

arojussi · Post by **arojussi** » Tue Oct 30, 2018 6:14 pm

Acne is highly vascular, so we would need biopsy to make sure if lesion truly is asps. During ultrasound it was considered to be tumor, but as I have severe acne and lesion is surrounded by acne I believe big and deep acne lesion is most likely. Biopsy would be almost as invasive as surgery, so I would just monitor the lesion for now as it is right under the skin it wont grow into any vital organ during my lifetime. I think, that one asps-patient first achieved stability to cediranib, but after surgery to non-responding subcutaneous lesion, she achieved complete response. Sorry if my memory is faulty. Actually I would prefer to use cryoablation or rfa for abscopal effect.

Dr Kononen believes strongly, that by studying subcutaneous lesion and micro-environment around it, he can find some way to get pd1-inhibitor to work more effectively. As I haven't seen any success using molecular profiling in asps I am very pessimistic. He just did liquid biopsy. I had nothing against it as it couldnt hurt.

As I had panic attack today my father will cancel Friday`s surgery. As my ekg yesterday showed either lateral ischemia, benign early depolarization or pericarditis and surgeon and anesthesiologist want to do full anesthesia I consider lateral ischemia to be unlikely especially as asps is full of blood vessels. Basically vascular tumor is pressing my coronary arteries and blocking blood flow to my left ventricle and this causes no symptoms during exercise. Sounds unlikely to me. My dad believes, that because of my high heart rate today complete anesthesia is safer than local. This is complete opposite of what I learned in medical school.

Post by **Olga** » Tue Oct 30, 2018 7:14 pm

Perhaps you can ask Dr Kononen what other ways are there to get pd1-inhibitor to work more effectively depends on the tumor make up? examples? To figure out his point and if it makes sense in ASPS. Ask him re. cryoablation with the next Opdivo? Soft tissue cryoablations are more often done than the lungs etc so it might be avail. locally - for example cosmetic surgery or prostate cancer or early stage breast cancer might be treated by cryo locally.

arojussi · Post by **arojussi** » Tue Oct 30, 2018 8:54 pm

If I need a cryo I would prefer Littrup. We wont be able to have infusion and cryo at same day, but few days delay is unlikely to make key difference.

Also I had theoretical idea how to increase response rate to immunotherapy. Injecting oncolytical viruses to my cardiac tumor and or bloodstream as viral infection will increase lymphocyte count. I think one type of oncolytical viruses is available in Finland. If oncolytical viruses are as save as they were decade ago there is no medical risk for me. Legal problems are whole orher thing.

Post by **Olga** » Tue Oct 30, 2018 11:47 pm

I am not sure it makes sense to go to Dr.Littrup just to cryo a small superficial soft tissue met, should be not a problem for a regular doctor if available. May be to Spain combined with the immunotherapy intralesional injection? like Seth had

D.ap · Post by **D.ap** » Wed Oct 31, 2018 4:04 am

Jussi and Olga
Interesting conversation .

I was looking back to review how the cardiologist / surgeon described the tumor

by arojussi
Fri Jul 20, 2018 5:09 am
Forum: Personal Stories and Updates
Topic: Jussi from Finland - Dx 2008
Replies: 640
Views: 42249
Re: Jussi from Finland - Dx 2008
Leading finish cardiac surgeon stated that tumor is too big to operate. Surgery will be reconsidered if met shrinks. It starts from cardiac muscle betveen left antrium and ventricle. Invading pericardium. So surgrery will be lot more difficult, compared to if it would be contained in pericardium. We try to contact Heidelberg. At least they have cardiac mri if we cant find one from Finland.
dium. So surgrery will be lot more difficult, compared to if it would be contained in pericardium. We try to contact Heidelberg. At least they have cardiac mri if we cant find one from Finland.

Was there discussion on where it’s being fed vascular wise?

arojussi · Post by **arojussi** » Wed Oct 31, 2018 9:19 am

We dont have to ablate superficial met. We can choose from pancreatic met or small lung mets. If I need ablation and can have Littrup I will have Littrup. It is so much easier to have operation done by somebody I trust. In Finland they have very little experience about ablations. One finish asps-patient couldnt have rfa here, because she couldnt handle anesthesia. Littrup did 3 lung mets from me at once without anesthesia. If we need to fly for ablation few hours longer in the airplane doesnt matter.

Post by **Olga** » Wed Oct 31, 2018 11:05 am

yes, that makes sense. The superficial met is not worse for the abscopal effect creation versus lungs. Dr.Littrup does not want to do pancreas usually. It is a high risk intervention always, any ablations in pancreas. But you need to schedule both within few days from each other, this is a problem. George had the cryo few days before of the Keytruda, so you would need to have a lung ablation, one day there for the airleak control, then fly back home and have blood work/oncologist visit/opdivo - for us it takes at least 3 days, so you would only have Opdivo 5 or 6 days after cryo. Which is not ideal, I would try to have it 2-3 days max apart. So this is why I said may be try to find local cryo for the soft tissue met. easier to schedule it day or two before Opdivo.

arojussi · Post by **arojussi** » Thu Nov 01, 2018 7:57 am

Yes timing is very difficult, but as I succesfully had brain tumor surgery, jaw met surgery and stereotactic radiation all in less than 2 moths I believe this might be possible, not easy but possible. As I know, what happened to finish asps-patient, who needed ablation in Finland I really dont feel confident about having ablation locally. Also I am confident, that subcutaneous lesion is just big pimple as it is less elevated after applying local acne cream to it. Today I was supposed to have surgery to remove it with full anesthesia, but my dad cancelled the surgery, because of my panic attack.