Chronic pulmonary embolism

fredntan

Hi,

I dont post much here.

I started as stage 3. I've been stage 4 since 10-13

I've been on afinitor and aromasin many years. I have been having intermittent shortness of breath for years. I did have 2 pulmonary embolisms back in 2014 when I was on chemo. These where found with cat scan.

I just wanted to share in case others have similar issues. I remember having definate periods of shortness of breath that last a few weeks or so and resolve. Cat scans never found embolism. I had a local pulmonologist. He said I had asthma. But the asthma meds never worked.

This last episode in October was the worst. I got short of breath doing activities of daily living. Couldnt unload the dishwasher with significant SOB.

I got a new pulmonologist Dr Chui or Chiu at UT Southwestern. He is brilliant. They ruled out heart issues. Then I had a VQ scan. It's a nuclear medicine scan. It found the tiny clots in my scar tissue in my lung. The scar tissue is from stage 3 rads. And is commonly refered to as ground glass.

I went on lovenox immediately with immediate results within a day! I could breathe again! I'm on a blood thinner pill , Xarelto.

Apparently this is another rare complication. Just like that ONJ I got. I have read it's hard to diagnose. My O2 sats pretty much stayed good. I have been dismissed all these years as being anxiety when really it was tiny clots.

I dont really know where they are coming from. They didn't do any ultrasounds on legs. I personally think it's from my very old port. It was TPA ed before this October episode of SOB. I'm breathing better. I see my pulmonologist on tuesday.

Cure-ious

Wow, what a story!! Thanks for sharing it, important to know...

Spookiesmom

Way before cancer, I had DVTs and PEs at the same time. 3 days in hospital on heparin. Sent home with loveinox. I’m on Coumadin for life. If I get a cut, I can stop it. A serious bleed would require a vitamin K injection like hemophiliacs get.

That won’t work with the med you mentioned. My cardiologist said no for me, for that reason.

Suggest you ask your cardiologist about it.

SandiBeach57

Fredntan. Thank you for starting this thread to educate us on lung emboli.

My liver mets were diagnosed unexpectantly from an emergency work up for shortness of breath.

Pulmonary embolism was ruled out from chest xray and CT scan.

When my O2 sat dropped to 70% with walking, a VQ scan showed the defect. My liver mets had traveled to my pulmonary arterioles. The diagnosis was Tumor Emboli Syndrome. The gold standard to diagnose this condition is a lung biopsy, but when you are in acute respiratory crisis, that is impossible.

Three months of inpatient AC chemo corrected the situation and stablized my liver mets.

It has been over 3 years, so far so good!

S