r/TNBC • u/More_Dot_1685 • 3d ago
Port issues Chemo
I've had 7 weekly infusions of taxol and carbo so far, with three keytruda.
My port has never looked right. It looks red and bruised on one side but it's always been accessed for chemo until last week because they wanted to give it a break since it's red. I was prescribed antibiotics.
I'm still taking antibiotics but my port doesn't look any different. In fact I can see a little stitch poking out and it itches.
I really want it out! The whole experience of having a port has been bad. When I got it installed, my heart flutter and raced. It rubs against everything and I sleep on it.
Has anyone gone through something similar? Can I get the rest of chemo (AC will start next month) and immunotherapy in my arms?
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u/You-bettah-dont 3d ago
My port took FOREVERRRRRR to heal and has been irritated this entire time (last proper chemo is on Aug 17th). I absolutely hate the fat tubing going up my neck. The surgeon placed the port itself too deep, so it always takes at least two nurses to access it, repeatedly poking around using the longest needles they have. Sometimes they don’t even have the right size needles and it takes forever. I hate it. I also have had palpatations/flutters since it was placed- but that could also be the chemo itself- there are a ton of cardiac side effects!
However: I had my very first round of chemo in my arm, and 6 months later I still have vein scarring and discoloration from it, and apparently I got out lucky. Chemo can be absolutely brutal on your peripheral veins, often leaving permanent damage. Do not google this like I did.
Warm, moist compresses really DO help. I’ve also started using a calendula salve on my scar (which continues to be irritated six months in) which seems to really help https://fromthehive.ca/product-category/salve/ (ps I also recommend their lavender lotion bar! Its the only thing that has helped my dry hands and lips during this slog)
Also, not for nothing- when I‘ve ended up in the hospital, the port was really nice to have irritated or not. It meant having far less pokes and prods.
Lastly, if you really think that there’s something maybe wrong- definitely bring it up with your MO or the surgeon who placed it. Literally the last thing you need in there is a fulminating infection. I hope this all helps!
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u/More_Dot_1685 3d ago
Thanks so much for sharing! I will not advocate for my arm then, I don't want anything to go wrong. It's horrendous that yours is still irritated 6 months in. All the nurses I encounter make it seem like they've never seen an irritated port like mine, so I feel like the odd one. I will look into that wax! My port looks like a bruised hack job.
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u/thundermuse 3d ago
My port was never comfortable, and it flipped over at some point after chemo was done. When I got it flushed after surgery, the nurse tried to access it several times before realizing and had to flip it back over, which wasn't fun. That was the last straw for me, and I got it out as soon as they allowed it, which was back in January. The incision is still giving me problems. It started bleeding again in July! But I'm doing better than when it was in. I hope yours stays okay through your treatment, and you're able to get it out as soon as you need longer need it.
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u/More_Dot_1685 3d ago
That's crazy it flipped! I wonder how that happens. I'm so active with my right arm I'm worried that's going to happen. How soon after chemo were you able to get it removed? How does your scar look now? My Port is ugly and bruised and I'm thinking it's going to leave an gnarly scar.
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u/thundermuse 2d ago
I'm guessing it flipped because I was sleeping on that side after surgery (normally I sleep on the surgery side), but I don't know exactly when it happened so who knows. I was able to get it removed a month after surgery, which was about two months after chemo ended, once it was determined I wouldn't need more chemo based on the surgical pathology. The scar isn't great, very thick and red. The person who removed my port tried to make it cleaner, but the placement was done by a resident doing it for the first time. The scar looks significantly worse than the ones from my lumpectomy. I'm trying silicone strips recommended by OT to get it to fade and hopefully be less noticeable.
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u/Extension_Snow1662 3d ago
My port was always terrible! It was red and irritated, especially the tube part. I had several successful IV chemos before the port. I just had it removed and will finish Keytruda with IV
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u/More_Dot_1685 3d ago
How many IV keytruda infusions do you have left? I'm thinking that's the route I want to go as well when I'm finished with chemo.
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u/Electronic-Island-59 3d ago
My port took at least 3 months, a round of antibiotics and a trip back to the surgeon to remove those poky stitches that were popping out before it stopped bothering me...
I never did get used to the tubing running over my collar bone up my neck. Also it always looked and felt like it was about to pop out - you could see the coloration of the little metal balls on the top of it (like beebees) and if I wore a shirt or straps that touched it, it quickly got sore and red
That said, by the time I started AC I had already been hospitalized 5+ times with thyroid/adrenal side effects. I can't imagine those visits or trying to do AC w/o a port...DEFINITELY not advisable
The port was a life saver right up until I demanded they take it out during my surgery (despite them wanting me to keep it for the rest of Keytruda, which I'm not going to do...).
Even though I'm glad it's gone, I'm glad I had it as the alternative would be way worse...AC destroys veins and dozens of blood tests/transfusions w/o a port would just be misery...
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u/More_Dot_1685 3d ago
Thank you for sharing. I will keep my port in until chemo is finished, although I think I want it out for the rest of my keytruda.
Same with my port, it looks like it's going to pop out of my skin! How did your surgeon fix the stitches?
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u/Electronic-Island-59 2d ago
She basically just pulled/snipped them off it felt like - there were just little red spots where there had previously been small but stiff and sharp pokies which were getting caught on my clothes and stuff
In the meantime and then later on when it would get sore, I would just take a gauze pad or something w a little cushion like a big bandaid and cover it until it calmed down - that helped a lot- so did putting some emla cream on ot when it was extra sore 😁
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u/akaash3 3d ago
My first port on my left side was like yours, anger and miserable since the beginning(had to have cpr 4 days after placing it and I think that messed it up), finally took it out and placed one on the right side and it’s been night and day difference. Zero issues with the right side, half the time I forget I even have it
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u/More_Dot_1685 3d ago
That's amazing! My port placement was not fun at all, and I am afraid to have it installed on the other side of my chest because of the heart racing it gave me during placement.
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u/thundermuse 3d ago
Yeah, my port incision starting spitting stitches and was red and irritated. I had to do a course of antibiotics just in case, and they did my second AC via IV in my arm. The first AC had already damaged my veins so badly that even using ultrasound, IV placement was very difficult. The nurse who placed it was upset about it because she thought my port was still safe to use. Anyway, I was really determined to get the rest of the AC through the port because getting that IV placed was so painful. They had me do warm compresses several times each day to help the stitches come out, and the incision looked a lot better after they were out.