Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan was found to have the cardiac metastases accidentally, 14 years after the primary tumor Dx and after his previous metastases were found and treated - multiple lungs, adrenal, pancreas, brain. The abdominal surgeon has ordered a cardiogram and after that echo as a part of the pre-surgery workout, he was planning to resect two new pancreatic mets that were found in Fall 2017.
The heart metastases were pretty advanced when found - 40 mm in the interventricular septum (a centrally located membrane in the heart where all the electrical conductors are located) and the other smaller one in the hearts wall. They were mostly asymptomatic when found and were not visible on the CT scans with the contrast Ivan was periodically having every 5 months to survey the lung mets so they could be cryoablated when reach 10 mm. It looks like the incidence of the heart metastases in patients with advanced ASPS could be higher than in other oncology patients as survival is longer and they are easy to miss and can grow to a large size unnoticed. I would suggest to scan cardiac specific all the ASPS metastatic patients after 10 years of clinical history.

The heart metastases became symptomatic in the next few months with the symptoms of palpitations and tachycardia, and the heart would skip the beat as every 8 beat disappear. Every person with heart metastasis is at risk of sudden death due to a cardiac arrest and should be aware of it and have a note on him about it, so emergency cardioversion could be performed if needed.
The additional scans were ordered to better visualize the heart mets and to be able to consult different teams around the world re. treatment options - they all want to see the actual scans - cardiac MRI and echo plus the cardiogram, and also to have the reports for these scans, plus to have the medical history (which we keep up to date in a table format). We obtained the copies of the scans and records and placed everything as a list of the separate flies in a DropBox so we we can give out a link to the scans. Some places would only accept the scans on a CD disk signed by the patients name and age and sent by the courier.
He was evaluated by different teams for the surgery - cardiac metastasectomy. The cardiac metastasectomies are not that frequently done, and we found that there is more experience in places that perform cardiac transplantation and septum surgeries for benign conditions. We started from asking for the referral to the best local cardiac surgeon to evaluate Ivan for possible surgical resection - the head of the cardiac surgery at the local hear surgery center at the Saint Paul hospital in Vancouver. It was a good move as they also have the best dedicated cardiac MRI scanner that they use for the pre-evaluation on a surgery planning stage, that is superior to the general MRI units we have at the cancer agency or general hospital. Dr. James, was very sympatetic but said that they perform cardiac transplants and benign tumors and other conditions cardiac surgeries but never in the septum or for metastases. But now Ivan gets his MRI scans there as a part of Keytruda treatment surveillance and we get the best cardiac team in town to review his case so they are in the loop if something goes wrong and the emergency heart procedure is needed. He is also under the care of the best cardiologist we have here, she surveys the cardiac specific side effects of Keytruda, performs the cardiogram, a Holter monitor device is also given sometimes to record the 24 hours heart beat.
Ivan is now at the 7 months into Keytruda (single drug no combo) treatment having started on Dec.22, 2017 and is doing good with significant heart metastases reduction and complete resolution of the symptoms.
I will review the cardiac metastases treatment options in the next post, separately, with the list of the special places we consulted and why.

Hello Olga and Ivan
I somehow missed this very important early July .

Bless you for the info as you all have so unselfishly provided to us all , for so many years .

Love to you all

Good morning Olga and Ivan and family ,

In reading back through you post , I want to reinerate the fact to all that the CT alone did not find / show the heart mets. As the CT is generally for more stationery / non moving organs and the heart is in constant motion .
Oh course a person needs to be looking for it to begin with, huh ?

Looks like a gated CT, where the pics are timed with an EKG, would give a good defined clearer pic on the heart?
A MDCT? If not available , then an MRI?

Again thank you for the history and heads up. We should all be so offering and involved .

Also reading of -

http://www.cureasps.org/forum/viewtopic ... 118#p12118

Occurances of other cancers of course ,and the larger tumor (septum)is considered not Pericardium or myocardial but
endocardial ?

I am not sure why the CT with the contrast is not sensitive for the cardiac mets - the lungs are moving organ too and they are pretty clearly visible. As an initial test that found a bigger cardiac met, a simple echocardiogram was used - it was pretty accurate for the bigger met, but the second, smaller one in the wall was only found by the dedicated gated cardiac MRI. And the electrocardiogram was abnormal by then. So for the initial investigation echocardiogram+electrocardiogram is probably enough.

Not wanting to clutter your post up, but the we are told to hold our breath , during the CT. No movement . So as to hold the lungs motionless