27-12-2018 02:06 PM - edited 27-12-2018 02:06 PM
Hi @Willie! Are you on one of the novel anticoagulants (NOAC) or old-fashioned warfarin? I had a pulmonary embolism back in the summer of 2017, and the docs put me on apixiban (brand name Eliquis) for six months -- the NOACs are great in that you don't have to get regular blood tests or cut dark leafy greens out of your diet, but you do have to adhere very strictly to the schedule of pill-taking, since they have a relatively short half-life. In addition, I'd suggest getting a medical alert bracelet (or making one, which is what I did) to wear while you're on the anticoagulants -- especially if you're on a NOAC, since they don't (yet) have a quick reversal agent should you have an emergency (unlike warfarin).
Post-surgery update from me: The day after Boxing Day will forever more be celebrated in our household as Detubing Day. Finally got the drain out on the mastectomy side this morning -- 14 days. (I'd been told that because of the type of surgery I had, I'd have my lil buddy *at least* 14 days, and I went in to the hospital slightly worried that I'd be stuck with it longer.) Apparently, I've been healing quite fast as it took quite the series of tugs to get the tubing out. Ouch. I'm glad I took some paracetamol this morning before I headed in.
Path results around 9 Jan, so RT planning won't be until after I know if I need a re-excision on the left, etc.
Hope y'all are having a restful, lovely, peaceful week. xoxo, r.
27-12-2018 01:47 PM - edited 27-12-2018 01:48 PM
Greetings ladies!! It's been a while I know, I last appeared here on 24 July and while I kept meaning to dip back in, life got in the way. I've caught up with all your posts for the last few months today and it's good to see the posts about chemo side effects slowly being replaced with posts about hair growth and approaching radiotherapy. Here's my catch up.
I finished my 4 FEC / 4 T on November 22nd, so five weeks 'out' today. I have to admit to keeping quiet here during my FEC cycles as many of you were having such a bad time and I thought it ungracious and fate-tempting to report that I didn't have any adverse side effects at all - other than the hair loss and weighing a ton (self inflicted!).
I hit a icy patch a few days before my first Docetaxol, I woke up with vertigo/or a derivative of, it wasn't looked at too closely as it's not life threatening. A couple of days on travel sickness pills sorted it out, although I walked like I was drunk for a week or so after. In the general scheme of things, it was just a bump in the road but I wouldn't wish it on anyone.
I had a PICC line put in before the poisoning started. I had expected it to last through the 8 cycles but it seems it's not usual for that to happen. It stopped working, they couldn't get any blood back out of it during the weekly maintenance and for the nadir bloods. I had an ultrasound to see where it was, if it had moved but it was being blocked by a clot just below my collarbone. They replaced it with a mid-line, a shorter version, and the hospital told me that I had to give myself daily anticoagulant injects for three months. That freaked me out, being needle-phobic, but I had to suck it up and get on with it. I did that for a week and then the oncologist asked me if I was taking my tablets. "TABLETS? THERE ARE TABLETS?" I shrieked ... when he came back up from under his desk he wrote me a prescription for tablets.
The Docetaxol wasn't as kind to me as the FEC, I did get very tired on the first lot, I had to take two days off work and lie down but that was on the back of the vertigo. The second cycle was easier, I took two days off just in case. The third and fourth cycles were even easier although I did take the days off as a precaution. I booked a dog walker for those days as I found getting round our (steep) park, pretty challenging. My fitness is not back 100% but it's getting there.
The mid-line kept me going for the next 3 cycles. That one failed just before the last cycle and I had to go 'traditional' and have the poison administered into my hand. I am just so grateful that I had that line for 7 cycles, even if it did give me a clot. They told me the clot would dissipate over the three months and then I'd be able to stop the anticoagulants. However, a follow up ultrasound last week has shown that it's still there and the radiologist has suggested that it'll be there permanently and that I just need to take the tablets forever.
Last week also saw my annual mammogram, brought forward slightly because of my forthcoming radiation, on the remaining boob last week. I was a bit fraught in the run up (understatement!) but it was clear. Hoo-effin-ray!!
I've got radiation starting on 3 January for 16 sessions. I'm a little concerned about the burning and will do as much moisturising as I can but I'm really rubbish at all that stuff. I'm also worried as I have lymphodoema in the arm on that side and it's stretching across my scar site. It's very fluidy and I've got an dread of the radiation heating up the fluid and me boiling from the inside out. I'm no doctor!
On a more positive note, my hair started to grow during cycle 7 of the poison. It's getting wiry round the sides but is still very sparce on top. The different lengths make me look like a cross between a baby bird, a 90 year old man and a testicle. That's a good look eh? In another cruel twist, I kept my eyebrows and lashes until my hair started to come back, then they jumped ship making me look like Humpty Dumpty with my big bloated steroidy-crisps and chocolate-bread face. I'm off to get one of those Lush shampoo bars as soon as I can.
Anyway, enough about me. It's been really good to read your posts and to see that we're all moving through this adventure we've been thrust in to. I'm keen to see your radiation advice too in the next few weeks.
24-12-2018 12:44 PM
24-12-2018 10:03 AM
23-12-2018 04:27 PM
Oh ouch ktk that sounds painful, seems we are all suffering with problem nails. Ive painted mine just to hide their hideousness! Just another gift frim the wonderful chemo!
Is it sore wihouy the nail?
23-12-2018 10:45 AM
23-12-2018 09:06 AM
Ktk glad youve found the eyelashes are coming back.. nice isnt it... Not so the leg fuzz tho!
Reddi you did make me smile withnthe doppelganger post... And loving the bow for the bag! Ive thought about spraying my white buzz cut with glitter to lookn ike a bauble!! Eyebrows are a tricky art aren't they? I remember the lady at the LGFB course saying they shoild be "siblings not twins"... Mine sometjmes just looked like dead slugs. Good news is when they come back they seem to do so quickly... Now have hairy slugs again!
21-12-2018 10:38 PM
21-12-2018 09:19 PM - edited 21-12-2018 09:24 PM
@ktk Eyebrow hope! I've retained a few resilient individual hairs and lashes, but I do miss them. Keep seeing a naked mole rat when I glance in the mirror. Even found myself musing around the glitter make-up section at Boots today, trying to imagine some way to make myself look festive next week, murmuring, Which glitter would go best with my drain bag? I ended up with some sort of blue glitter lipstick topper, because it was cheap. So relieved and happy to hear your report of the return of yours!
(I do have my eyebrow pencil etc. from the LGFB goodie bag, but no matter how hard I try, I always look like a doppelganger of my grandmother, who claimed that at some point she'd shaved off her unruly eyebrows and they just grew back more unruly, so from then on she drew them -- a doppelganger, that is, but for the buzz cut.)
Saw my BCNs today for my Pico vacuum dressing removal on the mastectomy / reconstruction side. Wounds are healing very, very well. My surgeon has left me with tight little scars that are positioned in such a way that I doubt I'll notice them in a year's time. Still a bit of swelling and some bruising, and ever so slightly raw (so I'll be covered a few more days), but all looks good. Because of the sort of surgery I had, the drain stays in for another week -- won't come out til the 27th. Can't wait. In other good news, the runs seem to have finally stopped today. Could be stopping the antibiotics, starting probiotics, or the combination of the two. Still waiting for word from the lab on whether I've had a recurrence of C. difficile infection, which might require some treatment. For some reason they tested for everything but that, even though the lab order was quite specific. At least I know I didn't have salmonella, E. coli, or some odd tropical bug.
21-12-2018 08:28 PM
20-12-2018 12:42 PM
@RedRose Just recalled that if @Kip is done with RT, you must be done now, too. I hope it went okay for you, and that your wedding planning has been a good, dreamy distraction. Thinking of you.
20-12-2018 10:49 AM
@Kip Cheesy is good! Especially right now. And I don't mean Christmas-time. Your children look so happy in the photo -- though not nearly as happy as you, the definition of bliss. You're glowing.
@SallyG63 I'm assuming that if you're taking your antihistamine at night, you're taking Piriton or another version that *causes* drowsiness (and so should help with rather than hinder sleep). Just thought I'd throw it out there in case you're taking an anti-drowsy form...
20-12-2018 10:10 AM