PICC line tips?

[AirIsUnderrated]

Hi lovely people!

I’m 5 weeks post mastectomy and sentinel node removal for DCIS and 2 invasive ductal cancer tumours; both hormone receptor positive, one HER2 positive and the other HER2 negative. I start chemo at the beginning of May. The surgeon said no radiotherapy but my oncologist has since said not to dismiss it after all.

I’m having my PICC line fitted in my hood arm on April 29th, and weirdly I’m freaking out more about this than everything else. Putting it in is less of a problem in my head than living with it. I’ve read loads but haven’t been told anything officially yet.

I’m in the UK. Has anyone got any tips?

[ToryH]

Hiii I had a PICC line in throughout chemo and I can tell you that I got used to it pretty quickly- the biggest annoyance was wrapping in before I showered. It actually made it easier for the chemo infusions - instead of having to put a line in each time.

[AirIsUnderrated in reply to ToryH]

Thanks for your reply. Oh I'd rather have something semi-permanent than a cannula, every time. I loathe cannulas with a passion. Where did you have your PICC line placed?

[Karina66]

Hi,I had a PICC line put in after my mediport got infected and caused a blood clot. Like Tory mentioned, the annoying thing is taking a shower or bath - you have to wrap your arm up. I was given a plastic sleeve that worked fine and taped the two ends up with surgical tape to prevent it from moving. You also have to be mindful of just not snagging or pulling the line, which when it came to sleeping kinda worried me seeing how I'm a side sleeper. I did have a decorative sleeve I bought from Amazon that kept it all contained, especially if you are wearing long sleeves or around small kids that may think the tube is something to play with. (Using an old sock with the foot cut off I heard can be worn too) I had to have the dressing cleaned/changed every week which was also a bit of a nuisance, not sure if that is the norm or only because I had to give myself antibiotic IVs every day due to my infection so I was using the PICC line every day. I had used the PICC line to continue my chemo, but really I wanted my arm back, so I ended having it removed and going the traditional route of finding a vein and getting the infusions that way. Luckily for me I only had a few more sessions to go and the nurses were good at finding a vein.

I had HER2 Positive stage 2 in right breast only - I did chemo for a full year with Herceptin & Perjeta, had a double mastectomy, no radiation.

[AirIsUnderrated in reply to Karina66]

Poor you, you've had a bad go of it. Are you finished with your treatment?

I'm a side sleeper too, and I'm already not supposed to sleep on the operated side.

I have to have Herceptinbut not Perjeta as my lymph nodes were clear. I'm not sure whether Herceptin counts as chemotherapy or is separate - any idea?

[Karina66 in reply to AirIsUnderrated]

I find anything injected into me is Chemo - although the side effects on Herceptin isn't too bad, it's still an infusion. My treatment completed last October. I had to be on Herceptin and Perjeta for a full year, I started off as well with Carboplatin; Docetaxel but those were only for 4 months and the remainder of my treatment was Herceptin & Perjeta. The Carboplatin & Docetaxel were nasty - hair falling out, neuropathy - you should have an ok experience with Herceptin.

[AirIsUnderrated in reply to Karina66]

I’ll be having epirubucin and cyclophosphamide in the first 3 cycles then docetaxel with Herceptin for the next 4, then Herceptin until a year is up. I think they can give Herceptin by injection though?

I’m glad you’ve finished. How is your hair now? I’ll be trying cold capping.

[Karina66 in reply to AirIsUnderrated]

My hair started growing back as soon as I finished with the Carboplatin & Docetaxel. My hair grew back very nicely, fine like baby hair and dark and straight. I had very frizzy, curly hair, now no more frizz which is a plus. I heard mixed reviews on the cold cap(headaches and some hair still falls out) I had gotten a very nice wig, but only wore it a few times since the pandemic hit as I just started treatment so I never went out or saw folks much. I mostly wore caps. I did get ice pack socks for hands and feet to help with the neuropathy..it sort of helped, but sometimes the cold was too much for me, I wanted to be as comfortable as possible during chemo and being cold wasn't really helping me too much. Herceptin can be a shot, but I was told it's not yet available in the United States.

[AirIsUnderrated in reply to Karina66]

I'm in the UK too. Yes, lockdown and Covid does sort of help the hair situation. My hair is curly too, very strong and thick. I had it cut short last week. I went from hobbit to pixie! It will be interesting to see how it changes. I've been allowed to work from home - they're being wonderful about all this. I think we get a subsidy towards wigs. I'll cross that bridge when I get there.

Did the neuropathy go away once the chemo finished? I'm a lot better at getting side effects than effects from most medication, and I can't help worrying about that.

[Karina66 in reply to AirIsUnderrated]

Each person reacts differently, but the neuropathy in the hands I don't have anymore, it's still a little in my toes, but I've done some acupuncture and self massages(using those knobby rollers on my feet) and I am seeing some definite improvements. When I was going thru the chemo, when I mentioned to the doc some of the discomfort I was having, he was able to lower the dosage a bit which physically and psychologically helped me too.

[AirIsUnderrated in reply to Karina66]

That’s good. It’s a bit of a long haul isn’t it? Good to know they can adjust things easily. 👍🏻

[Nanny23]

I refused a pic line and they put my chemo in my vein. It’s easier fir dr. To have pic line but not for patient. Hope you do well on chemo

[AirIsUnderrated in reply to Nanny23]

I finished my chemo in September and got the hated PICC line taken out. I've had pain since it went in in April, and am awaiting physio for the combined muscle, nerve and fascia pain. Still. Since I asked for it in July.

Good luck with yours!

[Nanny23]

Thanks