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

[arojussi]

About 45 minutes sometimes way less.

As propranolol is strongly connected to better response to immunotherapy. I now use 10 mg when I wake up. 15 mg hour before exercise. 15 mg before sauna and finally 5 mg before going to bed, to help me sleep. Rather too much than too little. I figured out that propranolol is safer than diatsepan for bad nerves.

[arojussi]

Usual starting dose is 40 mg of propranolol a day.

[D.ap]

Jussi glad you’ve managed with the still relative low dosage.
240 max dose a day ?

[jcs2007]

Thanks for this info. I had not heard
Of using propanol.

[arojussi]

It is new discovery. As some patients starting immunotherapy were already using propranolol. They have just recently noticed, that these melanoma patients have 70 percent change to be alive 5 years later. Clinical trials about the subject are just starting. Propranolol blocks adrenaline, increasing parasymptatic tomus allowing immunesystem to work better.

[arojussi]

So after exercise my heart rate drops quicly below 80 in the matter of minutes and often finally to around 64. When my heart rate is this low I still feel fine. In order to this be possible my left ventricle must be able to have relatively normal stroke volume. Lets try to estimate it. For 70 kg man with heart rate of 70 average stroke volume is around 0.07 l. Circulating blood volume is around 5 l/min. I am 55 kg, so I obviosly need way less fress blood in a minute. Around 4 l, would be my best estimate this is not exact science. So my stroke woulume would be 0.0625 l. For average 70 kg male result was 70 ml. Most likely explanation is that I am missing something. This kind of heart rate wouldnt be possible if tumor would be pressing my left ventricle strongly. Heart would have to beat fast to complensate small ventricle or I would feel sympsoms of inadeguate blood flow.

[D.ap]

Hello Jussi
We have ether at rest and or “stress induced “ ie chemical and or exercised induced. Then echocardiogram report sebsequent.
Normally pertaining to older folks..not cardio / metastatic folks .

MUGA gated once again

https://www.cancer.net/navigating-cance ... /muga-scan

[arojussi]

So I been doing math over and over again basically heart is just a pump. I am trying to prove to myself, that if my left ventricle is tiny, then it is not physically possible for my heart to provide enough blood for my body with heart rate below 70. My heart rate has stayed in 70 few minutes. Hopefully long enogh for me to notice, if my blood volume was too small. So lets say that blood output is directly correlated by body weight. Then my circulating blood volume in the minute would be 3.86 l. Lets divide that by 70. We get 0.055 l. Compared to my size this means, that my left ventricle is able to pump normal amount of blood. And this is most pessimistic assumption about my circulating blood volume. It is most likely higher number. If progression seen in my last ct, would be true brogression my left ventricle would simply be too small to do this. Something doesnt add up. Pseudoprogression would seem most simple explanation.

I did exactly same thought progess, before deciding to go to china for gamma knife. I obviosly havent become any more humble after that, so I still trust my thinking more, than I trust in avarage doctor. If my logic here is incorrect, then logic behind gamma knife is most likely incorrect and I am just very lucky.

This is just something I do to calm my nerves. Dont take it too seriously.

[D.ap]

Jussi
I love math too. :)
What EF (ejection fraction ,rates)
are being reported with the echocardiogram ?

[arojussi]

Havent asked. We will know next week. Of course coing to crosstrainer daily I really should notice if heart function is poor before that. As propranolol only blocks adrenaline it doesnt help with structural problems like giant tumor in the heart. If ventricle is still tiny as it used to be it would be physically impossible for pump with 40 ml volume to pump 56 ml. If blood volume pumped would be smaller I wouldnt have enough oxygen in my tisues. Unfortunately I am not sure if I would notice that as I didnt notice giant tumor growing into my heart.

[arojussi]

My dad just remembered, that after my first heart mri dr Kononen said, that it is a miracle that my heart is able to pump normal volume. So at least situation isnt worse now. As last ct moth ago showed progression something has changed. Either tumor has grown or became inflammated. As heart rate has gone way down tumor growth doesnt fit unless giant heart tumor and heart function are not connected to each others. I deal with the situation by writing my every though here and constantly monitoring my heart rate and measuring radiated subcutaneous met. By the way it is now 8 mm. Before immunotherapy it was 15 mm. So volume has shrunk about 80-90 percent. This would mean, that remaining tissue is most likely necrotic. But in order to this make sense all remaining necrotic tissue should be cleaned sooner or later as lesion is small it shouldnt leave a scar.

[D.ap]

Hello Jussi
So the ejection rate was within normal range at that time your dad was speaking of,and you feel since that time forward,you’ve only felt better, not worse ?

Talked with a friend
They weren’t sure how you got your numbers?

Of ml per volume from your heartbeat (70) to your weight to equal the guessed volume output , I assume ?
It was also stated that if your pulse was up more times than not, ( ie body not getting enough blood) that would be a good indicator.
However you have said you were asymtomatic , so need to go with echocardiogram readings, huh .

They brought up ejection fraction rate too , as a need to be looked at.

[arojussi]

Average stroke volume for 70 kg male is 70 ml and circulating blood volume in the minute is around 5 l. From there I estimated that for male of 55 kg circulating blood volume vould be 4 l in a minute. Assuming that when we multiply stroke volume by heart rate we get circulating blood volume in the minute is how I got these numbers. Every cancer patient feels better even if drug isnt working, because of placebo effect. So I try to prove that if pump is getting smaller it cant pump more effectively.

[arojussi]

I tried to explain carefully how I came up these numbers. If I made a mistake somewhere I am gratefull if somebody can tell me where. Also I am more than happy to explain more if you get lost in any point. Turned out high school math works when brain metastases are treated, so I hope it works for heart tumors also. Of course it is possible for tumor to grow without affecting to the heart, but I hope it is not likely. Also growth, that doesnt affect to the heart is very unlikely to kill me.

[D.ap]

Thank you Jussi :)
High school math with a medical knowledge mixed in..
Thank you for taking the time to explain this to me .
And I agree , that our instincts are more intune with our bodies . Doctors can’t tell all with test at hand . It’s all speculative?
Like when we were told pneumonia was an out of control tumor..by way of an X-ray . When we were new to ASPS . :/

We sometimes know ourselves better .
You are doing a great job .

Are you still on approximately 50mg of propranol ?
And still on a regular exercise sched?

But do keep in touch with your doc if ANY second thoughts enter your mind . No matter home little you feel it is to you.