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

[Olga]

You need the good quality heart scan for any outside consultation. There is a huge European treatment center in Heidelberg where they have all the scanners, big volume heart surgery, neutron/proton radiation therapy etc. - I will give lay out the contacts in the heart metastases section I started. But you need to consult the best cardiac surgeons locally first - they might actually have the good scanners where they operate too.
I think that Opdivo has the superior administration schedule versus Keytruda - one in two weeks versus once in 3 weeks. In the initial clinical trials with Keytruda they compared 2 and 3 weeks and there was a trend toward more activity in 2 weeks schedule beating the results by 3-5% which might seem insignificant from their point of view but it is for sure is significant for us, but somehow they adopted the 3 weeks one.

[arojussi]

Thanks. We will definitely check if they have caited scan here in Finland. When doctor suggested ct of chest to monitor my heart met I knew there must be a better way. In ct we must consider radiation exposure, but mri I can have as often as we want. As I use opdivo with yervoy first weeks are infusions every 3 weeks, but after induction phase it will be just opdivo every 2 weeks. Definitely agree that 2 weeks schedule is better: Easier to keep concentration of medicine stable in the body.

[D.ap]

Jussi

How long is induction phase ?
May depend on how well you tolerate the yervoy Opdivo combo possibly ?
FDA says Opdivo dose 1 x a month is ok’d at this time.

[arojussi]

My first memory is that induction phase is 6 weeks, ( I am not sure) this is based on kidney cancer study.

[arojussi]

Looks like I dont have to travel to Germany for heart mri, I found finish guidliness were cadiar mri is specifically mentioned for heart tumors. Of course I have to go to go to biggest universal hospital for scans, but as dr Tukiainen has already done so much for me I believe, that having heart mri where he works should be easily arranged. As my oncologist dr Kononen is stricly man of reason and having heart mri instead of chest ct is clearly superior option I doubt that he is against this.

[Ivan]

Looks like I dont have to travel to Germany for heart mri, I found finish guidliness were cadiar mri is specifically mentioned for heart tumors. Of course I have to go to go to biggest universal hospital for scans, but as dr Tukiainen has already done so much for me I believe, that having heart mri where he works should be easily arranged. As my oncologist dr Kononen is stricly man of reason and having heart mri instead of chest ct is clearly superior option I doubt that he is against this.

Certainly they would give you a gated heart MRI - it's highly indicated in this situation. Also, any heart surgeon who you consult would need a copy of that to give any opinion at all. That scan takes nearly 2 hours, so hopefully they can schedule you soon.

[arojussi]

Gaited scan is indeed a must in my situation. If tumor is contained to pericardium. pericardiectomy would be simple operation for open heart surgery. As asps rarely invades surrounding tissue and pedicardium is most common site for cadiac metastases and mine is asymptomatic this is possible. Actually complete removal of my femaral met was only possible, because membrane around bone contained tumor.

I been on my current drug coctail for a week and subcutaneous met has definitely shrunk a little. If it was 15 mm before immunotherapy now I would say it is 13 mm. Of course margin of error with measurement is around 2 mm at best, so cant be completely sure. In ideal case this coctail gets my asps to long lasting partial remission, so as it looks I am responding to immunotherapy and antibiotics would be neccessery for surgery, at the moment I believe continuing immunotherapy would be best even if surgery is Possible. Of course we re-evaluete once we get gaited mri done.

[Ivan]

For sure if you respond to immunotherapy then surgery can be postponed. Thing is, you must explain to them that you need the MRI immediately since you don't even have a baseline scan to judge how effective the immunotherapy is.

When I started taking immunotherapy, my heart related symptoms improved rapidly. After a few weeks I felt better. Also, George (from China) reported a similar feeling also.

Did they monitor you with a 24 hour holter test? Do they have you on monthly ECG?

[arojussi]

I havent had holter and I dont think it is neccessery as my heart met is asymptomatic. Ekg I propably should have more often at this point. I absolutely should have cardiac mri as soon as possible.

[Ivan]

I havent had holter and I dont think it is neccessery as my heart met is asymptomatic. Ekg I propably should have more often at this point. I absolutely should have cardiac mri as soon as possible.

Have you been referred to a cardiologist? It's important to monitor any changes, and the holter is something that a heart surgeon might also want to see in preparation for any surgery. EKG every month or so would be useful too.

[D.ap]

Morning Jussi
I agree with Ivan . The holter needs to be done sooner than later to help seen your baseline comparative readings before your next infusion . Especially since you know of your heart inversions arrhythmia , tendencies .

[arojussi]

So day after tomorrow we will go to talk to closest hospital near us, because obviously if something goes wrong we will go there. Arranging cardiac mri is highest priority for me at the moment. Having mothly ekg shouldnt be a problem. As my cardiacmet has been asymptomatic holter is still low priority in my mind. Obviously we will have it if cardiologist or cardiac surgeon wants it, but having it just to see how my heart functions these days isnt something I am motivated to fight for. Because of the size my heartmet looks scary, but pericardium isnt vital for heart, explaining my asymptomatic situation.

[D.ap]

Jussi

I’d be curious as to what will be used to monitor you to make sure all is going well with your heart , when u have your consult . Is there any data you have read of any other patient , attempting what you are , with ced, yervoy Opdivo and radiation ? Is bloodwork being looked at weekly , by chance ?

[Ivan]

So day after tomorrow we will go to talk to closest hospital near us, because obviously if something goes wrong we will go there. Arranging cardiac mri is highest priority for me at the moment. Having mothly ekg shouldnt be a problem. As my cardiacmet has been asymptomatic holter is still low priority in my mind. Obviously we will have it if cardiologist or cardiac surgeon wants it, but having it just to see how my heart functions these days isnt something I am motivated to fight for. Because of the size my heartmet looks scary, but pericardium isnt vital for heart, explaining my asymptomatic situation.

I'm not exactly clear Jussi - you list some heart symptoms in some posts, but you refer to it as asymptomatic. Do you mean the symptoms are not severe?

[arojussi]

Basically my heartfunction hasnt changed for years. Yes myheartrate at rest is high, but it has always been that way. Of course it is possible that I had heartmet years before, but without echo there was no way to detect it. Symptoms were so mild that I didnt notice them at all and I still dont. Now when doctor knows that there is huge tumor in my heart he is able to hear some abnormal sound, but that is all. Pro-bnp was and still is elevated, but it is starting to go down after starting immunotherapy. So in my books I consider it as asymptomatic, but I considered over 20 brain tumors as tension headaches.