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

[arojussi]

Yes everything is as usual.

[D.ap]

Again kudoos for your internal work .
Be steadfast to what you feel and know , our friend .
Love from us all

[arojussi]

I often wear monitor, that measures pulse from my wrist. After ”exercise” it showed my pulse as 55. This is too low to keep my blood volume sufficient. Meaning, that my my heart isnt able to pump enough blood with tumor anymore. Well I saw this and got scared so my pulse jumped to 80-100. Natural reaction for me to stress. Well as these monitors aren't completely accurate most likely explanation for number 55 is error by machine. As I should really notice cardiac failure during exercise, which I didnt.I am going to be really neurotic before scan. We went though this problem after ventricular tachycardia. I felt fine, but monitor showed pulse as 33. Obviously incorrect number.

[arojussi]

This raises question, how I can trust, that when same monitor shows my pulse to be less than 70 it is correct. First of all it showed heart heart rate to be less than 70 several times. In at least 3 nights. Also other monitor showed my pulse once as 69 after last scan. This number is almost too good to believe, but it is still possible if I had radical improvement. Last scan showed either pseudoprogression or progression so things are either really good or really bad. There is no middleground. Myocarditis can look like ischemic heart disease in ekg, so that can explain why my ekg about a moth ago was cleaner, than ekg 2 weeks ago. As giant tumor is fused together with the heart. Inflammation in tumor can in theory look like inflammation in the heart itself. I occasionally have sharp chest pain lasting just seconds. If this would be from heart I should feel pressure especially during exercise. I mostly have these feelings in rest.

[D.ap]

Hi Jussi
What device do you use to measure your heart rate?

[D.ap]

Morning from USA Jussi

The heart rate is wonderful news.
Especially while being on 50mg propranol a day .

Are you performing more freqrent bloodwork between infusions , as you are on propranol and yervoy now?
And how low is your blood pressure showing these days ?

[arojussi]

Blood pressures are mostly: systolic 100-120 diastolic: 60 -80. If pulse is elevated then blood pressure is also elevated meaning, that I am afraid of measuring of blood pressure and sympatic tone elevates all heart function. If blood pressure is low and heart rate fast, that would mean, that faster beating would ne needed to compensate for small chamber.

[arojussi]

So l write this just for peace of mind: effusion is still gone. It was almost certainly caused by tumor irritating the heart and pericardium. So most likely explanation would be, that immunotherapy and radiation allowed my immune system to attack the tumor. And as we scanned in 2 moth mark inflammation was still going on. As 31 hours after hearing the news my heart started to beat normally. This shouldn't be possible if tumor had grown. Blood pressure monitor confirmed numbers. Ekg can still be chaotic as inflammation in pericardium and or myocardium can look like Infarct. As brain mets died initial scan showed growth in one tumor. This growth was considered as radiation damage and similar responses are common in asps with immunotherapy. As I developed symptoms fitting with polymyaltica rheumatica (severe muscle pain and stiffness in neck and shoulders.) after starting immunotherapy chanses of response are 86 percent.

Oh and forgot the obvious radiated met is 7 mm.

[arojussi]

Once again trying to calm myself: tumor is affecting to my left side of the heart while right side is fine. In left sided heart failure, this would result in blood build up in the lungs causing cough. My cough has almost disappeared, do this is weird if tumor has been growing during last 3 moths. As situation is either really good or really bad. Really bad really doesnt make sense unless tumor and heart function are not in any way connected to each others.

[D.ap]

Jussi

It really does sound like all is well.
Your echocardiogram should give you the final piece of info to see the progress being made .
You are doing a great job .: ) do something fun and fill your time with things you love till then .

[arojussi]

So heart ultrasound hadn't changed since last moth.

[D.ap]

Jussi
Was it performed with a Doppler ultrasound ?
To show the blood flow ?
When’s the mri sched?

[arojussi]

Didnt ask if echo was doppler. Basically what is left of my heart is still pumping relatively normally. Echo was same as usual. Have to have cardiac mri, if we want to measure tumor exactly. Chest ct and brain mri will only allow us to measure these small lesions accurately. If opdivo is continued with these studies having heart mri isnt so high priority for me. As naturally we will see response in smaller lesions first. As heart is functioning ok giant heart tumor doesnt kill me in any time soon.

[arojussi]

As asps in completely unpredictable. Tumor might be necrotic and it naturally takes body long time to remove this necrotic tissue. Or tumor is growing so slowly, that echo in unable to show it. So looks like I need cardiac mri. Have to arrange that. Me thinking and writing in the same time again.

[arojussi]

As effusion caused by the tumor is still gone I am little bit optimistic. Tumor shouldnt grow without causing effusion. And if tumor doesnt grow at all it is dead. It has been over 3 moths and only one part of the tumor in my pericardium has been shown to grow in one 2 moth chest ct. Every other scan has shown stability. Of course this is natural for slowly growing asps. But tumor is huge 7 cm. As tumor gets bigger it has more dividing cells and it grows faster. So in the end conclusion is simple unless chest ct and brain mri confirm, that opdivo isnt working I need cardiac mri. I am just repeating myself, but this is how my thinking works.