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

[Bonni Hess]

Dear Jussi, I'm so sorry to be so slow in responding to your very concerning update about your just diagnosed large heart met, but we were traveling to Edmonton, Alberta for Brittany's four month Cediranib Clinical Trial scans, and I was without internet service until we returned to the USA last night. My heart is breaking for this new difficult challenge in your VERY courageous ASPS battle, but I am grateful that you and your father are so knowledgeable and so pro-active in fighting your disease and exploring the best treatment options currently available. As per Olga's knowledgeable post and Ivan's heart met experience, it seems that there has been treatment success with the promising treatment approach utilizing the radiation associated abscopal effect in combination with an Immune Checkpoint Inhibitor PD-L systemic treatment. I am Hopeful that you will be able to pursue and obtain this kind of treatmen soon . I know that you must be very discouraged and frightened right now dear Jussi, but try to stay strong and hold tight to the Hope that the promising new treatments offer. Take care and feel the embrace of my special hugs, my most caring thoughts, my healing wishes, my warm friendship. and continued Hope, Bonni

[arojussi]

Thanks. To but it in poker terms: I am forced to go all in. If my immunesystem learns to reconise cancer it will most likely control it, not destroy it completely, but I can live with it. Interestingly when I exercise I dont even notice heart met, so as long as it doesnt grow I life. As asps doesnt invade to surrounding tissue, but rather pushes them aside I am still alive, whith any other cancer I would be dead already.

[arojussi]

Some more thoughts about surgery for heart met: big size makes surgery seem impossible, but as tumor is asymptomatic maybe it wouldnt be impossible. It looks to be closer to surface of the heart. Of course surgery would come with a high cost, but if ipi, nivo cediranib and radiation dont get met under control surgery even for palliative intent is worth considering. Of course we would have to find world leading specialist for surgery.

[Ivan]

There is science sipporting use of tki with pd1-inhibitor. There is also science supporting yervoy and opdivo together. Also radiation is supported by science, but using yervoy, opdivo, cediranib, fractioned radiation combo is unknown territory, but I see no reason why they wouldnt work together. Have to stop using imodium, because it can destroy cut microbes. Also I try using probiotes. If I dont react to immunotherpy I die soon. Luckily heart attack is better way to die than brain swelling. Yes heart echo would have wound met before, if I would have insisted it. Heart met didnt affect my exercise so I hoped elevated probnp was just caused by thoracotomies and or chemo I had years ago. I made very stubid mistake again and it will most likely cost me my life. Well I made it to decade with asps, which is 5 years more than what finish sarcoma specialist can achieve. Yes it was stubid that I only suggested echo and didnt insist it. My yourney is most likely over soon.

Jussi,

Your thoughts were exactly my thoughts in November. Let me share with you the information on gut microbiome that may be helpful for pd1 and ctla4 response.

I haven't been to the forums, and I just found out about your situation from Olga.

We only have a few years until a complete cure based on the current state of technology. Did you look into getting some radiation to it to slow it down in one of the centers that can target using advanced methods?

[arojussi]

Thanks for response. I just came home from radiation planning for my cubcutaneous arm met. It will be conventional radiation 8 gy four times around the same time as my second infusion. Surgery for my heartmet is most likely more reasonable than in your case, because even though mine is very big. It might be in easy area. If it mostly grows in pericacdium and not a lot of myocardium is involved, then percardiectomy might be resonable. Based on quick look into pubmed: biggest cadiac tumor removed was 11 cm, so size itself shouldnt be contraindication for surgery. All other mets in my body can be easily treated. As my asps hasnt formed leptomeningeal carcinomatosis, I hope there isnt viable asps in my pedicardial fluid either. Of course if I respond to immunotherapy I might not need surgical approach at all. Responses to immunotherapy are rarely complete, but long lasting partial response would be good enough as my heart can function with 7 cm tumor aroud it`s left side.

[Ivan]

Thanks for response. I just came home from radiation planning for my cubcutaneous arm met. It will be conventional radiation 8 gy four times around the same time as my second infusion. Surgery for my heartmet is most likely more reasonable than in your case, because even though mine is very big. It might be in easy area. If it mostly grows in pericacdium and not a lot of myocardium is involved, then percardiectomy might be resonable. Based on quick look into pubmed: biggest cadiac tumor removed was 11 cm, so size itself shouldnt be contraindication for surgery. All other mets in my body can be easily treated. As my asps hasnt formed leptomeningeal carcinomatosis, I hope there isnt viable asps in my pedicardial fluid either. Of course if I respond to immunotherapy I might not need surgical approach at all. Responses to immunotherapy are rarely complete, but long lasting partial response would be good enough as my heart can function with 7 cm tumor aroud it`s left side.

Have you forwarded your scans to various teams for surgery consideration? It's good to hear their opinions. Of course, I did the same and I believe I was evaluated by around 6 different teams and they declined me. But it's good to know whether this option is available, even though of course the surgery is a very difficult one. Olga can provide you the contact information of these places.

I understand the abscopal effect inducing radiation to a soft tissue met. I was talking about potentially radiating the heart tumor itself to hopefully slow it down. There are some advanced targeting options that may work for the heart, as I found out. Again, Olga can provide their contact details if you ask her.

[arojussi]

Sorry wrote same thing twice and my atk skills dont allow me to fix the thing petter than this.

[arojussi]

Thanks a lot. When last week I found out about heart met I didnt think very deep about local treatments. As my ocologist knew my plan was to use immunotherapy again once my asps couldnt be controlled with other methods and my ocologist believed that time was now and ipi+nivo+cediranib+radiation wasnt bad plan I just went with it.

Having heart met removed here in Finland might be possible, but as there are suspicious spots elsewhere in my body finish surgeons are most likely against surgey even if it would be possible. Not to mention that I would like to have world leading expert perform surgery if possible. Changes of finding that kind of expert from this small countly are low. Statistically Finfand has great healtcare when it comes to most common diseases, but extremely rare conditions like asps heart metastases are never seen, so we dont have any experience about how to treat situations like mine. Actually first universal hospital, that treated me, considered that there was nothing more to be done before any surgeon was consulted, so I dont have as much fait of finish healtcare as most. So we will definitely stay in contact with Olga.

[Olga]

I started a new tread in the heart metastases where I going to lay out the info what I have on this subject, but in general for now I would ask for the consultation with the best cardiac surgeon locally to evaluate for the surgery (so you get the best MRI scan read by the best surgeon - there are no places with the ASPS specific experience) and to be referred to a cardiologist for the cardiac specific side effects monitoring as there is a very well known now autoimmune acute heart conditions that can be caused by the Keytruda esp. with the other two, so they have to know what your normal heart rhythm/cardiogram is to have it as a baseline for the emergency room to compare to and to consult with - the case is to complicated for any emergency room and they need to have a contact info on hands to ask questions.

[arojussi]

Thanks again. Same young doctor that arranged my brain met surgery realised that the closest hospital near us needed to be informed about my situation in the case of emercency. My restheartrate is around 80-100. I would be more worried abot this if my heartate hasnt been that way for years. There is also t-inversion, that has been there for years.

[jenhy168]

Hey Jussi in which initial scan did they find the heart met? I was reading back on your posts but it didn't seem very clear which specific scan it was identified in? Can chest CT scans show heart mets?

[arojussi]

Chest ct is very unreliable for heart mets. Thoracs mri showed lesion near heart. Finally chest ct showed lesion when it was 7 cm in longest dimension. Because of heart beating mri is useless for heart, unless is caited scan, that takes beating into consideration. My heart met was visible in chest ct year earlier, but lesion wasnt very clear and it was missed. Echo is ideal scan for heart as it is cheap, accounts heart movement and there is no radiation.

[D.ap]

Morning from here in the states Jussi,

Is this the scan machine (cardiac MRI) you are referring to?
This article was orginally written in 2006 and updated 2014.

It talks of using gaited technology to monitor the hearts movement (ECG/EKG machine )in helping the computer to time the taking of the pictures to produce a more effective/ clearer pic when the heart is at rest ( still). After you hold your breath. : ) as quote
“MRI's can be more difficult to conduct because it requires absolutely no movement of the person in the machine. Breathing can evan blur the images.”

https://www.myvmc.com/investigations/ca ... e-imaging/

[arojussi]

Thank a lot. This looks like correct machine. Not sure if we have this here in Finland. But I have already travelled a lot for my treatments, so I dont see reason to do anything differently.

Plasic surgeon that operated my primary tumor Erkki Tukiainen is contacting heart sutgeons to see if my heart met is operatable. He is great surgeon. I cant say enough good things about him.

My subcutaneous met is definetely little smaller so immunotherapy might be working. If I react to immunotherapy Imight not need surgery or we can wait till tumor shrinks making surgery easier.

This might be just wishfull thinking, but I am carefully optimistic, that I might not die in the near future. Because of location of met I still dont notice it during exercise.

[arojussi]

Cardiac mri machines are in Europe. Based on quick look at least in Germany. Going there for cardiac mri will be little inconvinient, but I dont see why it wouldnt be possible. We are both in EU and I imagine that the whole point of union is that countries can help each other when needed. I travelled to China for treatment and it was amazing success, compared to that caited mri in Germany is nothing.