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.
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.
Well said CDC!
RedRose how did the last one go? Ive got a little red sunburn patch on my collar bone but doesnt hurt yet.
RedRose... Ring that bell loud and proud!
merry Christmas everyone... May it be SE free and full of love and peace!
@RedRose 🔔🎉 CONGRATULATIONS!! 🎉🎶
And to everybody who celebrates the holiday, Merry Christmas! 🎄🎁☃️🎅🎄 May 2019 bring us all much health and happiness.
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?
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!
@Shi Txx for the tip! And I've already picked out a contrasting green gift bow for my drain bag! Tis the season! 🎅🎄🎁
@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.
@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.
@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...
Thanks everyone, I know the bell etc is a bit cheesey, but it definately marks a point in time and meant a lot to my kids to ring it with me. Feeling emotional today still, hoping i can fend off the worry gremlins until after Christmas at least!
p.s. @Kip: I just saw that they mounted the bell right under the "Way Out" sign. Nice touch.
Ack! Edited to add: 🎊CONGRATULATIONS! 🎊
@SallyG63 Gah, I snort-laughed at your comment. And that's even though I teared up when I read the quote on the bell when @Kip shared it. I'm a sentimental cynic or a cynical sentimentalist -- just can't determine which.
An American friend of mine -- diagnosed and treated for ER-, HER2+ DCIS a couple years at age 37, who just got word of something amiss in her follow-up scans and so is having an MRI-guided biopsy -- US shared a link to a poem, "The Fourth Sign of the Zodiac" by Mary Oliver, that she turns to at times. It wasn't my thing -- well, cynically and sentimentally, there were lines I liked and loved, and others at which I rolled my eyes -- but it might be exactly right for some of us...
Sally, Yes he probably was! The bell ringing marks the end of active treatment.. there is a poem engraved on it which says "Ring the bell 3 times well, its toll for all to say, my treatments done, the journeys won and now I'm on my way".
I've done it and rung the bell (that's my lovely children supporting me) did get the doctor to take one with my husband in it and when I got out, it hadn't worked! Grrr.. never mind nothing can dampen my smile today... hope the happiness lasts and I don't hit a low tomorrow... but for now... smiling!
Oh Sally nothing is ever straight forward is it, hope they sort the appointments... 12 hour days is not doable especially as they harp on about the fatigue kicking in! And as for the mammogram... just grrrrrrr
Thanks for tips Sally unfortunately im so small i cant reach the door frame!! Hope planning went well. Im now booked in foe the Hope Movjng on Course jn February and also gots lots of information about other therapies available, may have reki and reflexology after xmas. Was quite surprised to be told as a cancer sufferer uou are now classed as disabled! And as such have all the benefit rightsnof a disabled person. A sobering thought. I aas also given an exercise dvd especislly designed for breast cancer patients to help with gettjng movement back and preventing lymphoedema. So a productive afternoon.
Yayyyyy that is such good news Jencat! So pleased for you.
Reddi - oh dear sorry to hear you have another bout of tummyness! Hope it sorts itself quickly for you.
Kip, your last post made me laugh re music played whilst havingscan/rads!
Michelle and Kip, I had good news yesterday, CT scan was clear of cancer! (A bit of 'fluffiness' on my left lung, but onc said it was in the exact spot where I had rads, so it is inflamation from that and she's not worried) Onc said I'm now in remission and has discharged me! I wasn't expecting that as I thought before I started chemo she'd said she'd see me alongside consultant for a few years as I'm TN. Tbh, I'd rather I was still seen, but perhaps I should think of it as good news that she doesn't feel she needs to! xx
Michelle thanks for the response, funnily enough I saw the radiotherapy nurse yesterday for a catch up and she said I will see them again 4-6 weeks after finishing the rads and then it will be a mammogram and an ultrasound (sounds promising but I'll wait and see) 1 year after diagnosis (so May) and then regularly check ups after then. I think I am being seen by ONCs to check on progress with Tamoxifen too, so sounds the same as you. It was good to see the nurse because I finally know that I do have Cording!!! All the way from wrist to armpit.. .fabulous! She showed me how to massage it gently and I am on the list for an appointment with the Lymphodema clinic so that they can have a go too. So glad to know thats what it is. She was lovely and I told her about the fear after finishing treatment and she said that its so so common but that they have lots of therapies and counselling and exercise classes to help and that I will always have an open door to Radio, Oncology and Breast clinic so I can call at any time for evermore if I need to chat or am just worried about something. She said some ladies just come in when they are feeling fearful just to have their minds eased. I asked about my aches and pains too and she thinks its chemo hangover plus a bit of Tamox thrown in.. She said it should ease over time (not sure how much time mind!). She also advised to keep a note of how I feel on the different brands of Tamox as some can make you feel different and you can request the chemist only supply you with the brand you like.
Reddi - I hope you are feeling ok today, sounds nasty and something else you can do without. Take care.
Sally - That is a nightmare time for an appointment for Radio isn't it.. hopefully they can get it changed for you?
Well its the penultimate radiotherapy session today... still doing ok, not sure if I am feeling more tired. I think over this last year I have just got used to feeling tired so its become the norm! Had christmas music playing as they did the rads yesterday.. that was a very bizarre thing.. not sure entirely appropriate... as the song was "Simply having a wonderful Christmas time" as a machine buzzed over head and routinely fired beams at me! Oh well I had the theme from Titanic playing as I had my initial MRI so can't expect too much.
Alas, I am not feeling well today. Had some shivers last night but just thought it was the cold weather. Woke up with a distinct facial flush and discovered I have a fever. Thighs ache. Lower back aches. I spoke to my BCN this morning and she advised regular paracetamol and visit to the clinic tomorrow morning to see if they should extend my antibiotics. However, my bowels have become overactive and my most recent visit to the loo was decidedly loose. So I am wondering if my C. difficile infection may be recurring. Now I have to decide if I call again... I think I will wait to see what next visit to the loo brings.
Good luck Jencat with those results today. Hope this gives you the all clear and you can move forward. Its good to hear you are finding counselling and therapies useful. I think we all need something to help us move forward once we are done with active treatment.
Reddi - how are you now, glad you got home!
CDC - well my dear what can I say! How dare they!!! What a nerve! That is so out of order, after everything you have been through, all the information you have gathered and provided them with. Don't let them wear you down Clare... when you feel good and ready you give them hell. To blatantly get all those details wrong just beggars belief. I really do believe that if, for one minute, they had to walk in our shoes, they would be taking these things much more seriously and understand how we need assurance and good honest guidance in every step we take. To even insinuate that they did all they could and "tough get on with it" is...well... can't even begin to put that into words that wouldn't be taken down by this forum!! Big big hugs to you... they better watch coz CDC is coming for them!
But on a better note CDC good to hear you have a date for surgery and are feeling confident with the new team. How are you feeling now chemo is done, are you suffering any aches and pains? I am stiff and achey in every possible joint know to man! From toes to fingers! Can't work out if its chemo, radio, Tamoxifen, menopause or all of them. Just hope it eventually goes away. Am just trying to focus on getting radiotherapy finished this week and then have a break over christmas to rest up a bit and then see what happens. Don't even know what happens once I finish rads? Whether I get a scan or something? Anyone have any ideas? I know they said I would get a mammogram on the remaining breast around about the 1yr anniversary of my masectomy so that would be May time.
Hi Michelle, thank you for thinking of me. I'm ok, but still struggling a bit emotionally at times. I was offered counselling when I was having chemo and rads, but I didn't need it then and always felt I'd find it harder once I finished treatment and I was right. I've been having some counselling through Macmillan and that has been helping and also I'm entitled to 6 free therapies through a local charity and I've found that beneficial too. So far I've had a hand and foot massage, which was lovely! The therapist is an ex-nurse and comes to my house. I've found it nice to be able to talk about my cancer to her if I want to as I can't really talk about it too much to anyone else because I don't want to upset them or they don't understand as I 'look well'!
I'm feeling quite anxious today as I'm seeing my chemo onc tomorrow pm to get the results of the CT scan I had 2wks ago. It was to check that the last few mm's of cancer has gone from my internal mammory chain. My chemo onc said she'd be surprised if there was anything still there when I saw her in the Summer, but I can't relax until I know for definite, although I keep thinking surely they wouldn't leave me for 6mths after the finish of rads if they were that concerned?! It's been difficult though to move forward when I don't know if I'm cancer free or not.
Sorry to read that you're struggling too and hope you find your counselling helps xx