Long-term H&P...keep or remove the port???

MommyErin

Hi ladies. I was diagnosed stage IV de novo, Her2+ 3 years ago. I've been NED for 2.5+ years and still receive H&P infusions every 3-ish weeks. My port is causing some minor issues and I would love to have it removed, but it's convenient and I'm not sure I want to have an IV placed in my arm every 3 weeks. I know Herceptin is now injectable, but perjeta isn't. Would love to hear from others in a similar situation decided to do. Did you keep the port? Why or why not? If you've switched to Herceptin injections, what has your experience been? Thank you!

MinusTwo

I kept my port as long as possible. Finally the nurses were unable to draw blood out - although they could still put in the H&P and they could still put in contract for CTs or MRIs. Turned out that little flap that is supposed to go both ways got stuck from outflow.

Still - I would have either kept it or gotten another one if I had ongoing treatments.

sweetp6217

My MIL had trouble with port and got picc lines put in. She wasn't very mobile though.

Spookiesmom

I still have mine after 8 years, intend to keep it for as long as I can. I’m stage 4 now, may eventually have to go on some IV chemo again. Besides, less surgeries, copays, risk of infection.

LoriCA

Stage IV people are usually advised to keep the port because unless you're one of the lucky outliers you'll be on IV chemo again eventually. If you have it removed now, chances are high that you'll need to have a new one put in later, so now you're talking about two outpatient surgeries. Also, because we Stage IV HER2+ people are on IV treatment for many years (if we're lucky), Herceptin and chemos are very damaging to our veins. My veins are completely shot and any time someone attempts to access with a needle I usually end up with a few blown veins after 20 minutes spent trying to find a usable vein. I know you're thinking about the Herceptin injection, but you've already had a couple years of IV Herceptin so do you know what condition your veins are in currently? Do you have blood drawn for labs through your port or a vein? Next standard treatment after Herceptin is Kadcyla, and that's IV chemo again. Just a few things to think about.

What kind of problems are you having with your port? Mine acts up sometimes, it doesn't want to give up blood and they have to use Heparin to get things flowing. If you're having problems with infections, clotting, or anything like that, that's a different story. But even then I would consider having it replaced, not removed.

MommyErin

Thanks for the feedback!

LoriCA- If all goes well I'm hoping to eventually switch to H&P injections (when P becomes an injection). My port does sometimes have problems with the return and is a bit "short". I have labs drawn through my port unless requested by my primary care and have to be drawn in a lab that won't access my port (1-2x/year). My arm on my port side has had a superficial blood clot (resolved shortly after) and since has appeared slightly swollen and red-purple compared to my other arm. It doesn't appear to be lymphomdema though. My husband, who is a cardiologist, thinks it's a blood flow issue that my port is probably interfering...nothing major as it hasn't gotten worse, no infection, but it's annoying me. Having been in remission for over 2.5 years, I think part of it is mental. I know I'll keep it until it causes serious problems or H&P both become injections, but I'm sick of it ;-P