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

[arojussi]

Sorry forget about one symptom that is definitely caused by heart met. Acid reflux. So ths is just wishful thinking, before we get echo and cardiac mri, but my met might be contained in pericardium and drowing towards surrounding tissues iritating my upper dicestive tract. This would be lot better, than if tumor would be growing into cardiac muscle. Thanks for helping me to think.

[Olga]

Jussi - Ivan had one lung met, pretty big like 30 mm, that caused the need for his last surgery with Dr.Rolle (his 4th) years ago - it was located on the outer surface of the left lung close to the pericardium. Dr.Rolle told me in after surgery discussion, that when he was removing it, he had to burn out the numerous small tentacles this tumor put forward toward the pericardium - sensing the abundant blood supply there. It could have been about the same in your case? Like a direct invasion from the lung met from the outside?

[arojussi]

I was afraid of that as my asps can grow in lungs with just one mutation and immunotherapy works better for tumors with high mutational burden, so if it just lung met growing to pericardium my immune system will have hard time to recognize my cancer. Luckily I believe met growing inside pericardium being much more likely. First of all thoracs mri can chow 1cm lung mets with 100 percent sensitivity and I had those every 2 moths, it is very unlikely that tumor would manage to grow into heart before being detected. Also some suspicious lesion was visible in the heart in thorax ct year ago, but as they didnt know what to look out for it was missed. Based on most recent ct tumor looks like it is growing from the heart. When My dad noticed subcutaneous tumor in my arm I didn't consider it as asps met as subcutaneous mets come when disease has adwanced far and grows in unusual places like heart. If my heart met grows from pericardium and subcutaneous tumor is asps met, then it fits together perfectly. As my asps has changed and can now grow in unusual places my immune system will have easier time to recognize it. As my subcutaneous met has shrunk 2-4mm and my pro-bnp is going down I am carefully optimistic.

[Ivan]

Sounds good, basically what you're saying is that the symptoms were not severe enough to be obvious but some are recognizable in retrospect.

When is the next scan going to be? Echo at least, or any word on the MRI?

[arojussi]

Echo and cardiac mri will be as soon as we get them arranged as echo is simple I cant imagine it will take long to have that.

[Ivan]

I had to press all the levers I could to get the cardiac MRI in an urgent fashion. In the end, the cardiac surgeon marked it urgent and it helped things a lot. Otherwise, the wait time was like 2 months.

Again, you need to stress to them that this complicated and expensive drug cocktail you're taking needs to be tested for efficiency and you need the baseline scan right away. Otherwise it can be difficult to judge the effectiveness.

[arojussi]

Thanks. As pro-bnp is coming down and subcutaneous lesion is now 1.2 cm. Before it was at least 1.5 cm, so baseline cardiac mri should happen soon.

[D.ap]

Jussi

Hello can I ask what your bnp values are now and what they were prior to when cediranib began?

[Olga]

And one more question in addition to what Deb asked - what is your bloodwork WBC situation - Neutrophils and Lymphocytes, and if they are different now from that time you had Keytruda.

[arojussi]

Netrophis are fine. There hasnt been big changes. Bro-bnp has been over 1557 in early summer. 1280 in the day we started immunotherapy. and now it is 1050.

Radiation for subcutaneous met will be 8 gy in 3 fractions. It took a lot of fight to arrange. At first they planned 4 gy in 5 fractions as they dont have stereotactic radiation unit. If we want to have radiation and infusion in few hours from each other we have to have them in the same hospital. And I believe that having radiation and infusion as close to each other as possible is more important than having 4 fractions. Of course I will most likely burn my arm, but that can most likely be dealt with by creams and antibiotic creams. Naturally I cant use systemic antibiotics, whithout destroying immunotherapy`s effects.

Echo next Wensday.

Dubcutaneous met is 1.2 cm , before immunotherapy it was at least 1.5 cm. Heartrate is coming down. It was today 85, which is normal for me.

[arojussi]

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.

[D.ap]

And one more question in addition to what Deb asked - what is your bloodwork WBC situation - Neutrophils and Lymphocytes, and if they are different now from that time you had Keytruda.

Jussi ,

Thanks for the info
Apparently you were posting as I was posting and I missed your post about heart tumor location.
Glad that they are considering surgery when and if shrinkage happens .

Is your bp also a little higher ?

The axitinib / pembro trial with ASPS patients in Florida USA, is seeing a correlation beween neutrophils/ lymphocytes success rates .

http://www.cureasps.org/forum/viewtopic ... 609#p12262

[Ivan]

Thanks for all the information Jussi. I think things are generally heading in the right direction. It's good that he said they would reconsider after shrinking.

How about getting an opinion on radiating the heart met itself?

[arojussi]

Considering options like radiating heart met, is one of the reasons why we contacted Heidelberg. As tumor is very big and radiation resistant, it is possible that radiation would do more harm than good and it definitely cant kill the whole tumor without causing lethal damage to heart.

[D.ap]

I would certainly agree with your thoughts on the radiation being off the table as an option.
Using the subcutaneous treatment , I would hope would be the ticket to aiding the heart met .
Prayers : )