Superior Vena Cava stent

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Back in Feb I developed a massive blood clot at the end of my port, it almost entirely blocked my superior vena cava and extended down into the right atrium of my heart and led to a delightful 6 week hospital admission.

Since discharge I’ve managed to complete my radiotherapy treatment and now they are looking at dealing with the clot & port. 

The blood clot has shrunk significantly in the past 3 months (I’m on blood thinner injections) and I had a call today from my oncologist. 

They want to remove my port and place a stent in my SVC to prevent further issues.

I’ll meet with the interventional radiologists in a couple of weeks to discuss it further in detail, but does anyone have any personal experiences of SVC stent they would be happy to share with me, so I can know what to expect?

  • Hi  

    It’s good to see your name pop up again, but sorry to read what you’ve been going through. How did you get on with the radiotherapy? Hope it went ok for you.

    I don’t have any experience to share I’m afraid, and I don’t recall this coming up before in the group, but somebody might read this and reply even if they haven’t posted before.

     I’ve had experience of chemo causing me to have a pulmonary embolism and being on blood thinners for months, and I’m currently back on permanent blood thinners after a stroke, but not had to deal with the same issues as you. Have you got more treatment scheduled after your clot clot issue is sorted out? I really hope that you’ve been doing ok despite this issue.

    Sarah xx


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  • Hi Sarah,

    Oh s**t so sorry to hear you’ve had a stroke - hope you’re recovering ok ?

    I’m not too bad thanks, finished all my treatment a couple of weeks ago and just a few lingering side effects - fatigue, bowels & hemorrhoids (oh what joy!?) 

    Nothing else planned except the port, clot & stent (that’s enough!) and then I’ll have my post-treatment scans early August… fingers crossed!!

    Do hope you’re doing alright.

    Jen x

  • Hi Jen

    I’m doing fine thanks and recovered well from not being able to say a sentence or count! Scary at the time.

    Hopeful the bowels and fatigue will improve over time-mine definitely did after radiotherapy finished. It’s a long old wait for the scan and then the results but I’ll be hoping everything has done its job and you’ll get good results. You’ve certainly had a lot to deal with in addition to treatment with the clot and having to get a stent so hopefully there are no further surprises for you.

    Sarah xx


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  • Hi Sarah 

    So pleased to hear you’ve recovered well, I can’t even imagine how scary that must have been!

    Are you back on injections or able to manage it with tablets? 

    Do you mind me asking if you got lumps from injecting the first time, and if so how long they took to fade once you stopped?

    My stomach is black and blue and so lumpy, it’s awful. Thankfully have gone from 4 a day down to 2 following a change in dosage, but I can’t wait to get off them completely.

    Ah thank you, I’m really really really really hoping for some good news come Aug!!

    xx

  • I’m on daily tablets thank goodness. I have had numerous sessions with the injections though after my embolism and surgeries. 

    I can tell you my tummy was an absolute state-the bruising was horrendous, and yes, I had lumps from the injection sites. To be honest this scared the life out of me at the time but I found out it was quite normal. My bruising eventually faded and the lumps disappeared but it took a few weeks if I recall. I was black and blue. Each time I was on the injections I had one jab a day for 28 days-slightly longer than that after the embolism, until the doctors agreed I could have tablets for a further 3 months. One little tablet a day now is way better than injections-I was a complete wuss about them!

    Sarah xx


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