Last night I had an absolute meltdown and cried uncontrollably for an hour but I have woken today with a slightly clearer head and am trying to imagine what it's going to be like in the coming months and trying to get our lives as organised as possible.First of all I need the surgery site from single right side mastectomy to heal completely after getting 2 infections on the suture line. The rush is on before chemo starts. I'm back to seeing the community nurses daily as one of the infections is well and truly on the mend but the other under my arm, where I assume the nodes have been taken has no infection but it is now a great gaping hole.I have to have heart tests to make sure my heart will withstand the chemo as I have a mitral valve prolapse.Then they want to have a port inserted, I've heard such varied stories on these and I'm really unsure of this. Is it doable with the veins in just one arm? For 14 rounds over 18 weeks? I see the oncologist again in 2 weeks to make sure the surgery site is good for chemo, go over heart tests and get a start date which he wants to do asap after consult as I will be 6 weeks post surgery.I believe it will be 4 rounds x fortnightly of doxorubicin the. 10 x weekly of pacilitaxel and something else I can't remember the name of. Has anyone had this mix?. He told the first 4 rounds will be the toughest. Thanks for listening.Big love❤️

Hi @CathyMac so glad you are having a good day after yesterdayi have a port and I love it. It was put in under a local and I stayed in but I also had a ton of other tests that day so I think it was just my oncologist and his protocols and my chemo started the next day. Have only had one day where it wouldn’t work and I’m still not sure it wasn’t the nurse as it has worked perfectly every other time. Anyway they put the draino down it and it was fine. I went the port as I have extremely difficult veins. The day it didn’t work initially they took my blood test in one spot and started my chemo in another and had a few attempts ar the bloods so I was bruised to next Christmas. Much rather the port! I put the numbing stuff on before I leave home and have a couple of panadol and don’t feel a thing when they put the needle in best thing out. My port is in my arm rather than my chest because my surgeon doesn’t like them in the chest(ruins her work) and the onc follows what she says!

Oh @CathyMac, I wish I could step into my computer and give you the biggest, gentlest hug. The wound part of things, I feel are being taken care of and will continue to improve with your community nurses and doctors. As far as the port goes, I can offer you this. I have a number of other medical conditions, one of which is a blood clotting disorder. As a consequence of this, I've been on Warfarin (a blood thinner) for over twenty years now. I have to have a blood test, on average once every two weeks, more often if the results are playing silly buggers and are too high or too low. So twenty years of very frequent blood tests have left me with one vein in my right arm which I call my least badly behaved, not good, but the best of a bad bunch. For me, having the port was my only option. Was also offered some other line, which has a tube and cap poking out of the skin, covered by a dressing, which would mean no swimming. Also my grandson was only fourteen months old at the time and I was worried that he may grab at it. So I decided on the port. I've never regretted it, and now, two years after finishing chemo, I still have it. I get it flushed and heparin locked (a solution is left in the chamber of the port to stop blocking), every six to eight weeks. No biggie. It has been used multiple times since chemo for IVs , blood tests and even the contrast for scans. I have had other medical issues since the chemo and bilateral mastectomies, including brain surgery last September. The port took a while to get used to, but like a new filling in a tooth, you soon get used to it. I reckon I'll keep mine for as long as they let me. My chemo regime was 4 X AC every three weeks then 12 X Paclitaxol plus Herceptin weekly, then after that final Paclitaxol, the Herceptin continued for a total of eleven months. The first cocktail was, for me, harder than the second, but we all differ in our responses. Ally.

Hi @CathyMac, it doesn't help when you are trying to get a new and unexpected part of your life in some sort of order but chemo effects are very variable and what works for one is different for another. I had the same regime, as @kezmusc says it's a frequently used cocktail. I had only one side effect from A/C which was at least partially caused by my age, and worked throughout both types of chemo. I actually had more irritation with Taxol, although most people find it easier. Your oncologist is being honest in indicating that side effects can make working hard or impossible, it's just not certain. One of the hardest things for treatment is to try and take one step at a time, rather than planning ahead. Planning makes us feel in control but it can be very hard if the plans don't quite work out. Best wishes.

Hi @CathyMac I have a port and am really happy with it. It was put in under general as a day patient prior to the start of my chemo (which was AC-T). The first week or so it was a strange sensation to have something implanted in my body, but now I forget that it is there.I had always planned to have it removed this month (January) as I have finished chemo, however, after my mastectomy in October I got an infection and was on iv antibiotics for ten days in hospital, the antibiotics were administered via the port. Using the port was great as it meant that I didn't have needles in my arms and was therefore way more comfortable. I intend to keep the port until after my reconstruction surgery just in case I get another infection.Best wishes with whatever you decide.

Hi @CathyMac I too was undecided about a port when it was suggested. There is a thread from January "To port or not to port" that I started with this question and got back a lot of responses that helped me decide. I went with the port, and although I had issues at the first appointment, I was very glad to have it in the end as it saved my veins and meant that each visit was so much easier.https://onlinenetwork.bcna.org.au/discussion/17972/to-port-or-not-to-port ;

Next steps. | BCNA Online Network

14 Replies

Mantis
Member
7 years ago
I’m on the same regime, fortnightly AC x 4 and weekly paclitaxel x 12. I found AC wiped me out for the first six days (fatigue and quite woozy so unable to drive) but after day six everything started to feel better until the next cycle. Life is a lot more normal on paclitaxel and while I’m tired and achey I can still function pretty much normally.

It all seems incredibly daunting at the beginning but it’s been quite manageable and I’m surprised at how quickly it’s gone.

I have a port and while it’s not my favourite thing in the world I’m really glad I have it. I use Emla numbing cream beforehand and don’t really feel it being accessed.
LIttleBlueWren
Member
7 years ago
Hi @CathyMac

I have a port and am really happy with it. It was put in under general as a day patient prior to the start of my chemo (which was AC-T). The first week or so it was a strange sensation to have something implanted in my body, but now I forget that it is there.
I had always planned to have it removed this month (January) as I have finished chemo, however, after my mastectomy in October I got an infection and was on iv antibiotics for ten days in hospital, the antibiotics were administered via the port. Using the port was great as it meant that I didn't have needles in my arms and was therefore way more comfortable. I intend to keep the port until after my reconstruction surgery just in case I get another infection.

Best wishes with whatever you decide.
Sarnicad
Member
7 years ago
Hi @CathyMac so glad you are having a good day after yesterday

i have a port and I love it. It was put in under a local and I stayed in but I also had a ton of other tests that day so I think it was just my oncologist and his protocols and my chemo started the next day. Have only had one day where it wouldn’t work and I’m still not sure it wasn’t the nurse as it has worked perfectly every other time. Anyway they put the draino down it and it was fine. I went the port as I have extremely difficult veins. The day it didn’t work initially they took my blood test in one spot and started my chemo in another and had a few attempts ar the bloods so I was bruised to next Christmas. Much rather the port! I put the numbing stuff on before I leave home and have a couple of panadol and don’t feel a thing when they put the needle in best thing out. My port is in my arm rather than my chest because my surgeon doesn’t like them in the chest(ruins her work) and the onc follows what she says!
Afraser
Member
7 years ago
Hi @CathyMac, it doesn't help when you are trying to get a new and unexpected part of your life in some sort of order but chemo effects are very variable and what works for one is different for another. I had the same regime, as @kezmusc says it's a frequently used cocktail. I had only one side effect from A/C which was at least partially caused by my age, and worked throughout both types of chemo. I actually had more irritation with Taxol, although most people find it easier. Your oncologist is being honest in indicating that side effects can make working hard or impossible, it's just not certain. One of the hardest things for treatment is to try and take one step at a time, rather than planning ahead. Planning makes us feel in control but it can be very hard if the plans don't quite work out. Best wishes.
kezmusc
Member
7 years ago
I worked part time through out. The AC part is a bit average to say the least. There was a routine with it though.

The fternoon of chemo I couldn't do anything, day 2 and 3 no problems, day 4 was yuck and good from there until the next one.I was pretty good with the first 3 but the 4th one was a doozy. I did try to work after that but couldn't. It took about 10 days to get back to normal.

The paclitaxel I had very little problems with. I found it much easier than AC.
CathyMac
Member
7 years ago
Thanks all for your replies.
@kezmusc my thinking was also along the lines of not wanting another reminder of this bloody cancer shitshow but I've lost my right breast and I'm not getting away from that so I guess a little port isn't going to make much difference🙁 so much to get your head around and my head is spinnimg
@kezmusc how were you impacted by the chemo. Mine is every 2 weeks and the oncologist thought I most likely won't be able to work. Did the 2nd round of chemo drugs impact you differently?
kezmusc
Member
7 years ago
@CathyMac,

Glad you are feeling a little better today. So many ups and downs along the way. Bloody awful.

I had the AC T which is the same one. 4 x 3 weekly AC (doxyrubicin/cyclophosamide) then 12 weekly Paclitaxel, it's a pretty common regime.

I chose no port as I had an acquaintence who had recently finished chemo and had nothing but trouble with it. Plus I did not want daily reminders of what was going on by having a port stuck there. It's personal choice.

I had no problems with my veins until the last 3 or 4 taxol when they needed heating up a bit beforehand. I was also having weekly blood tests throughout as I had refused to take the neulasta injection and they held up pretty well considering.

If you go that way drink a truck load of water beforehand and heat works well. If they have more than two goes at inserting the cannula just ask for another nurse or the phlebotomist to do it. There are protocols about cannulation they are supposed to follow, sometimes they need reminding.

I guess it all depends how needle phobic you are as well.

The whole shebang is filled with so many choices.

xoxoxo
AllyJay
Member
7 years ago
@"Patti J", I had my port put in with a local anaesthetic only, about two hours before my first chemo...they left it open accessed for that. Bloods taken at a pathology lab are taken from my one accessible vein, but if in hospital, I dig my heels in and insist on a "Port Access" qualified nurse. They are plentiful on the chemo unit, the oncology ward, the haematology ward and emergency. I refuse to let them go vein hunting when I have a perfectly usable port. I have two scars, about 2 cm long which have faded to a thin silvery line, no wider than a cat scratch.
Blossom1961
Member
7 years ago
I hated my port @CathyMac but I would still recommend them. I have good veins but the nurses struggled getting a cannula in. One nurse used to dig until she got it. Ten minutes she took one time. I was sobbing for the next twenty minutes. Out of the sixteen treatments, the port only refused to work three times plus an extra time when the horror nurse decided not to bother trying the port. Most people prefer the port to the alternative.
Zoffiel
Member
7 years ago
I think it is worth a go @cathymac. My port was a bit cranky at times, but it worked well enough during infusions. I've had chemo twice now, and I can tell you there is no comparison between having a needle clipped into your port ( about a 1 on the pain scale) and the misery of multiple stabbings trying to find veins which then collapsed, phlebitis etc. they can be uncomfortable and it's yet another procedure, but I thought it worth that to chemo like a pro. Mxx