Just thought I would shine a light on some problems we in the UK should be aware of concerning our beloved PICC lines.
These weird and wonderful devices make it possibly to get infusions easily, get blood drawn and receive everything from transfusions to IV antibiotics without searching painfully for that one good vein.
What I didn’t know, is that they are subject to causing blood clots in our arms, unrelated to the usual blood clots associated with having cancer.
Also, one can suddenly become allergic to the dressings used to secure the line!
So, at the very end of my last treatment, I suddenly became allergic to the dressing, so that I had a lumpy, itchy rash that lasted for 2 months after the PICC line was removed.
This year’s treatment began a a little over a month ago and I had the PICC line inserted into my other arm, just in case. Sadly, an ugly spotty rash began almost immediately under the dressing.
The Chemo nurse gave me an expensive hypoallergenic dressing, but the rash only got worse. At my next infusion, it looked like my arm had the measles.
The rash was so bad, I felt as if my arm had swollen up around it. And guess what? It had!
Only it wasn’t the rash. There was something wrong with my arm. The Chemo Suite had me come back and whisked me upstairs to the Vascular Department, where the technician performed a quick ultrasound, because he already knew what was wrong, just pressing the wand against my shoulder.
There was a blood clot there caused by the PICC line.
He assured me I was not in any danger, but the line had to come out and I had to go on those tummy injected blood thinners again.
Ouch!
The doctor spoke to me back in the Chemo Suite and it was decided that I would now have a Portocath, which is pretty trouble free once inserted and does not require a dressing.
It is a bit more problematic to fit and needs time to heal before one can be infused, so I hope I get an appointment quickly, so it’s ready for my next infusion on 24 of December.
I guess what this is all about, is that I never thought about a possible blood clot from the line and if I had, I would have gone in a lot sooner. I should have realised that the swelling of my arm was not a good sign.
So, pay attention to the details ladies!
PICC lines are not perfect.
Best wishes to all,
Laura
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Lindaura
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Did not know about the clot issue connected to the PICC line. Ports are not completely trouble free. They can become infected. It does not happen often but it does happen.
Hi. I am in the US and have a power port. I only got it a week before my first chemo so it was burning a bit during the first treatment though they have you put lidocaine or similar on it an hour before to numb it. It has to be flushed once a month and they give you heparin in it before and after chemo to stop blood clots. I've only had 4 chemo treatmenst but so far I really like it. I hope yours works for you and you don't need the shots for too long! xox
I have a power port too, and it's been a blessing. I had it installed and had chemo on the same day so that all the anaesthetic is in place. It gives the port incision enough time to heal up before you next have chemo. I also have a lidocaine cream to put on before chemo and it numbs the skin nicely so that I can't feel the needle going in.
Sorry you had such trouble with the PICC, but hopefully the port will work out better for you.
There's also something called an Emla bandaid, which already comes with the numbing cream applied. Same principle. I apply one of them about an hour prior to the port needle going in, and leave it on for an hour. When taken off, the skin is still numbed for quite some time.
It's great for a medical chicken like myself. Generally the other chemo girls laugh at me for using this, but hey.. every little comfort counts!
Has to be bought & brought on your own initiative though. Don't think the nurses offer those.
Oh, what a shame about your piccline, Laura. Thanks for the warning. I've been very lucky with mine, both times. No bother at all apart from this one came out a bit after a while but as it was functioning well we just carried on using it. In fact I still have it in as they can be left in for a year. Although I finished Chemo early October I've had it left in to ensure the Dye can be put in for my next scan, coming up soon. Three different times I had to go without the Dye because it was impossible to find a vein so I'm pleased to hang on to it. Mind you, I'm longing to have a bath and be able to relax right into the water!!
Good luck with your port. Hope all goes well, Solange 😊 xx 🤞
That’s the funny thing about my allergy. I left the PICC line in last time, an extra 2 weeks for scans and just in case I needed more treatment and then suddenly got a reaction in the very last week.
Otherwise, I had always loved my PICC Line.
But this morning, after having it removed yesterday, I had a long comfortable and comforting shower for the first time in a long time!
For me, the port took about 7 to 10 days of healing after surgery, but has been fine ever since. Wouldn't want to miss it.
Tip: You can ask to be put under for the small surgery, via a short sedation. I did and noticed absolutely nothing.
That said, you can get into trouble even with a port, but it's probably rare (seen only one case during my chemo, where it had slipped and needed replacing).
They did not offer that option to me, I pushed for it. On account that I am so anxious and panicky, and the placing of the port is such delicate work.. I'm almost sure that I'll move about and that could cause problems, could it not? Etc etc.
I had mine done this afternoon too and it took nearly two hours. I had a guy “ in training” although he was overseen meticulously by the consultant.
I’ve got a wound in my neck as well, which no one has mentioned. I didn’t know until I saw it in the mirror. My needle was left in too, as I was due chemo this afternoon. Someone bumped into me in the street while I was returning for the chemo and it rather hurt. BUT no chemo as neutrophils too low, so the needle had to be removed. I wore a rather fetching Xmas jumper which was a big mistake. It was hard to get it on after the procedure, hard to get it off to have the needle removed, hard to get it back on. Goodness knows what time I will go to bed as I’ve got to get it off again. Big mistake! Do the rest of you wear blouses and cardigans? But I also want to see the wounds properly instead of pulling the neck of the jumper down so I’ve got to take it off soon.
Although it wasn’t pain free, there was a lot less pain than the flexible sigmoidoscopy I had last Monday.
Hope you’ve recovered now Laura. What instructions were you given?
Did you have sedation? I only had local anaesthetic, which meant pricking with needles at least 12 times. Ouch! But the worst part was just knowing what she was doing, cutting me and pounding me and wiping blood that was dripping down my neck, while my head was turned in a painful position the whole time.
As far as clothing myself,
I always wear a scoop neck tea shirt type dress with different coloured long fabric cardigans that just drape over me, and tights.
It was very painful to get dressed afterwards even so.
I wore a loose sport type bra to the hospital, but could not put it back on and I can’t figure out how I can ever wear a bra again, as the strap would go right over the Port.
I am very sore, especially my neck, and the vein at my throat as well as my chest around the Port. Everything is a deep red around the port and down my chest where I knew she was pounding me making that so-called pocket.
The wound looks clean and the port is in place, but I am not comfortable at all. I am taking Paracetamol every 3 hours.
I called the Chemo emergency line to make sure it was okay to be flaming red and they said that was normal on the first day.
I don’t have a temperature.
I wish I had not become allergic to my PICC Dressing and had not got a blood clot from the line, because the PICC was so much more comfortable and a snap to insert.
However, I am angry that I could not get the sedation that ladies in the USA get normally and I am going to whine to my CNS about it.
We just should not have to put up with extra discomfort when we have already suffered so much.
Hi Laura. Argh what a butcher. I'm sorry you and Helen both had such a traumatic experience. Why would they not offer alternative anaestethic options? I even got those offered at my dentist back when I was still in the UK... although admittedly I had to pay for that privately (125 GBP well spent, in my opinion) , and it was a private practice too; maybe that's the difference? At least some strong dopey anti anxiety meds would have been nice.
Be good to yourself/yourselves the next days (but no shower at first, right? ), and I hope the clothing challenge gets resolved. Bras will be fine once the wound has healed. Maybe put an extra dressing or two between wound and a light bra for now, to spread the pressure over a bigger surface ? Hm... what do they expect... that we walk into the hospital butt naked on surgery day and stay that way for days after??! 😲
Anyway...Once it's healed, it'll be a godsend. Hugs. Maus
Well, I didn’t ask for any sedation so I can’t say whether I would have been given it or not. How do you know your wound looks clean, have you taken the dressing off? The consultant told me to keep the wound dry for two weeks but my CNS said for a couple of days and let the air get to it. I have no real instructions as the whole surgical team disappeared. The procedure started two and a half hours late, and took two hours. It was 14.10 when I was wheeled to recovery and they hadn’t had any lunch. I have a small card about my port but it is in Turkish! I think I have tracked down on the web what type it is. I’m lost without instructions. I think I’ll wear a fleece today, certainly not a jumper.
I had two paracetamol yesterday. I might take another when I get up. I am being quiet as I don’t want to wake my dog as he kept sniffing the area where the port is. By sniffing I mean pressing his nose against the spot - fortunately the Christmas jumper is thick. Somehow I got it off last night. Amongst other things I have to buy my tree today and decorate it and go out into the fields and gather my holly and ivy. That’ll be doable but I don’t think I’ll be able to ride tomorrow. Then Thursday, back to London to get the delayed chemo because of the low neutrophils and back again to London on Friday for Handel’s Messiah at the Royal Albert Hall and overnight to, wait for it, go ice-skating at the Natural History Museum. Right now, I don’t think that’s going to happen, but Saturday is a long time away.
I do hope you feel better soon, Laura. I understand ports have a lot more to offer than Picc lines, not the least being able to shower and swim easily.
I also had portacath inserted and three hours later began chemo. Have had port for 3 years with NO problems. You can shower, bathe, swim, get blood drawn easily and comfortably!
I am so sorry for all the trouble you have had with your PICC line. I do not have any experience with that but I do have a power port. I had mine put in early August of 2017 and started chemo mid August. I am now on my second line of chemo which I just started. I have never had any problems with my power port. They did offer me numbing cream but honestly I am not bothered by the poke. It is the greatest thing to have my power port. I
hope you have a very positive experience with yours. I wish you well with your treatment Laura! Happy Holidays and Blessings! Peggy xx
I continued with Avastin. I had 1 more dose when my cat scan showed plural effusion in my right lung. My CA-125 had been steadily climbing but nothing was showing up on cat scan until the last one. I had them order it because I was having pain on right side. I was not too short of breath yet though. They caught it early. They will follow up with parp inhibitor this time. I am on Taxol and Carboplatin again. They said I responded well to it the first time. This way they save other drugs for later if needed. Abdomen was clear of disease.
So Laura that is why my power port was in all the while. I was in maintenance treatment with Avastin. I will leave mine in awhile after treatment. Have a wonderful Holiday!
Hi I have a picc line at the moment. It's great for treatment, bloods but for some reason every time it is flushed before treatment it has blocked. It usually takes about an hour of flushing with various things to get it cleared. Anyone else have this problem. Morag
Very true about the dressings- I have to take citirizine or I can't bear if. When I had my port fitted they left the needle in so that I could have treatment the next day- might depend what the treatment is though I dare say as mine was magnesium.
I am now trying different ointments to treat the rash topically. Currently trying a Benadryl cream. Taking Piraton (chlorohenamine maleate) because the vet had prescribed it for my little Staffy when she got hives from spring grasses and it worked a treat.
BTW: there is nothing more adorably terrifying than a Staffy with hives! Huge bumps all over her muscular little body, so she looked like a mini-Rhinoceros!
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Generally the other chemo girls laugh at me for using this, but hey.. every little comfort counts!
Should I get a port/ PICC or just hold off?
Unbearably itchy arm from PICC. PICC taken out. Getting a Port put in. One more carbo/taxol then Avastin for 1y. Good choice to get port?
Last chemo (second line) 
Carbo/caelyx 2nd line
