Ibrance and/or long term port & Blood Clots?

[Merma]

Hi,

Got out of the hospital after having a thrombectomy for superior vena cava syndrome. I had a dvt that completely blocked off my blood flow from my head to my heart. Scary! Scarier because I was suffering with a swollen head for 6 months before any dr took me seriously.

Been on Ibrance 4 ½ years for endometrial cancer with 2 recurrences. My cancer behaves like mbc. I was going to get my port removed after having chemo, but ending up keeping it after the 2nd recurrence. 3 risk factors: port, having had cancer, and Ibrance.

Has anybody had svc syndrome or deep vein thrombosis? My dvt was in my left upper arm. The clot was at my neck, front and back shoulders and chest. It affected the range of motion in my arms.

Has anybody had this?

[8576]

Sorry, I haven't had that but it sounds awful on top of everything else. Again maybe your oncologist has some answers. Or your regular doctor. Hope you get some relief.

Cheers, June S

[fancydog]

In 2018, first I suddenly became short of breath, I had a very large clot suddenly appear in my rt atrium and was too large to make it all the way thru the rt ventricle to be pumped into my lungs.(lucky) I was on Faslodex, Xgeva only at this time. Was walking around with a power port that had not been used for over 2 yrs and when it was used it was often clotted off by a Fibrin sheath. I had a procedure done with a catheter placed thru my external jugular to the rt atrium that pumped clot busting medicine for 12 hrs into the clot, I watched this procedure on a fluoroscopy-type scanner, the clot damaged my valve between the rt atrium and rt ventricle and strained my heart, but a recent echo showed that my heart had finally recovered, BP med reduced and I am on Eliquis for life now. Oh and after a month on Eliquis the port was removed and I am still just on Faslodex injections. Feeling lucky to be alive! And you are too!

[Merma in reply to fancydog]

Oh no, your dvt was in your heart! That must have been so scary for you! I am so glad to hear that you made a complete recovery. How did you process this emotionally? I’m mostly ok, but sometimes danger I was in hits me and I get a bit weepy.

[hurricaneheather]

with the initial dx in Oct 2011, it was discovered that the body has a high factor VIII assay... at risk for DVT. thus, the med team watches and prepares for procedures accordingly.

[Merma in reply to hurricaneheather]

Have you had your port in for 11 years? Your drs are doing a great job! Since I was getting monthly flushes and CT/PET scans every 6 months, I thought my drs were on it. I see now that more serious monitoring needed to be done. My port is now dead, so they have to take it out. I’ll be on a port vacation until I need one again. Not liking monthly blood draws in my arms. The nurse said lidocaine messes with the blood flow in the arms.

[hurricaneheather in reply to Merma]

it makes the heart sad to read that the port is not working for you, anymore. no port with initial dx or mets dx, for me. it's been blood draws in the left arm for 11 years; the veins are becoming tired. with regard to DVT, Intermittent pneumatic compression (IPC) devices are put on the calves, for procedures.

[morty87]

My port is nearly 16 years old. I get allOf my labwork and any MRIs through my port. It was once discussed to replace my port with a verified power port but was told there was so much scar tissue that it may cause problems. I’ve not had any issues with my port - knock on wood. It’s a part of me and makes my life easier in many ways.

[Merma in reply to morty87]

That’s awesome that you’ve kept so long and it still works. I agree that a port is so handy and way less painful with lidocaine than being stuck with needles in the forearms.

[fancydog]

My Onc said anyone with Cancer has an increased risk for clots and some people are just naturally more prone. I did not know there was a lab test for this. But the Cardiologist said mine developed from the tip of the port catheter as I had no sign of swelling, lymphedema or impaired circulation. If I ever have to have another port, I will be on anticoagulant therapy!

[Merma]

Update

I still had facial swelling, dizziness, and headaches. 1 ½ months later, had port removed and a superior venacava gram. The port actually caused stenosis in my svc - it was 95% blocked! The dr did an angioplasty in that vein and EVERYTHING cleared up!!!! Still on Eliquis, but hopefully for not a lot of months.

If you keep your port and have issues, please make sure your interventional radiologist follows up.