All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Hi I was diagnosed with breast cancer beginning of Feb and am nearly 3 weeks post wle,mammoplasty, sentinel node, should have been back on Friday for results but they weren't ready so feeling a bit frazzled at the moment!

helly welcome. I'm offering a hand to hold while you wait for the results I hope they are available very soon!

Gosh helly I had no idea the results might be late - mine are due Wed and I feel like everything is on hold till then . I also suspect the entire planet will text wanting to know which I'm rather dreading.
We can wait together
We had a lovely evening last night without the DC thanks leslie, very odd not to need babysitter! I've managed not to injure myself today though I hadn't realised I'd still be so uncomfortable 2 weeks post op. Hopefully the dressings will come off on Wed mrsrhodgilbert.
elmindarina My kids are a little older (7,9,11) so we've had to tell their teachers and the parents of a couple of their closer friends. Lucky really as DD (7) told a friend about Mummy's lump, causing her to have a bit of a panic.

Welcome helly I'm sorry about your wait for results, how annoying. Hope they come through ASAP and lead to a straightforward and positive treatment path.

And hi Elmindarina - I have a DD(6) with her own health and development stuff... We've worked to keep her routine as normal as possible and have just talked about strong medicine that might make me tired sometimes. As far as one can tell, it hasn't distressed her much.

Hello hello to all. Could anyone offer any experience on when they stopped feeling tired after chemo (general insomnia aside)? Also any neutral tamoxifen stories? Whenever any medical people speak to me about it, the first thing they mention - before the benefits even - is hot flushes, weight gain and mood swings! I'd be very grateful although I'm lurking a bit at the mo as am annoyed with myself for being a grump generally. Time to buy some cheering daffs. And Spring to everyone on a windy Monday morning.

pepperrabbit good luck for Wednesday too!

lilymaid waves frantically ! what chemo are you on ? am just coming round from my first lot of EC - I'd forgotten how bloody horrible the post chemo days were.

Welcome Elmindarina - am certain that the girls here will look after you (I am afraid I seldom post here)

Thanks for all the welcomes

I've got a meeting with DD's teacher tomorrow just so they are aware and I can tell DD about me being ill when I'm ready.

Hoping to hear from the consultant today about my next appointment.

Helly - hope you don't have to wait too long

Good morning all. Welcome helly and elmindarina. Sorry you had to be here but it is the right place and the ladies here are lovely and supportive. I have two DC helly aged 8 and 10 and they know mum is sick and being treated, but not too much information to be honest. Children need the basic info in my opinion to avoid unnecessary worry.
Dinster i continued to feel tired after my chemo( 4 dense dose cycles of AC , then 12 weekly doses of Taxol) but it has been almist two months now since my last dose and I am starting to feel much better although i am having the rads now and they can make one tired too. I am torn between exercising and relaxing. I am not that fit so my ability to exercise is limited anyways, but I have read so much about the benefits of exercising for cancer patients that I feel sort of guilty for not
Waving to everybody else. Apologies for not mentioning everyone. It has been busy here recently and am trying to catch up:)
Wishing you all a good day ahead.

Thanks royal, I'll try to be more patient... Hope your rads continue to go smoothly this week.

Hi dinster, I've been on tamoxifen since July 2014. I've found it to be ok really. After the first few weeks I did have a short spell of hot flushes, but not very bad ones. That lasted no more than a month then stopped. They did come back for a few weeks last year, but disappeared again.

In terms of mood swings I haven't noticed anything, I think just being in this situation alters you slightly as a person but I haven't blamed the drug.

As for weight gain, I have noticed that I'm a bit heavier than 20 months ago at diagnosis. However, I have also been pretty lazy and I do love to cook, bake etc so although it would be easy to blame the tamoxifen I actually think it's self inflicted.

My periods have also stopped. The thing it has caused for me is a thickening of the womb lining. This is being monitored by regular pelvic scans and a hysteroscopy last autumn. I've also developed a couple of ovarian cysts. This is the more worrying SE, it can lead to womb cancer.

Helly, what an awful situation to be in, that's inexcusable. I remember that post op appt, it was terrifying and I don't know what I'd have done if the results hadn't been back.

Pepper, good luck for Wednesday.

Royal, thinking of you again with your marathon rads sessions.

Hello everyone and thanks for the new thread. I'm another one with an iPad that gives up on large threads.
Welcome to Elmindarina and helly and best of luck for your results appointments. You should get more a view of the management once the lab results are back.

My second FEC has gone ok, but I have some achiness from the high dose GCSF they have prescribed. I would much prefer to take the regular dose but I suspect my oncologist will not want me to go down a dose if the high dose keeps my neutrophils good. Dh has made me pack a hospital bag like a pregnant woman, such is his paranoia of neutropenia. I think this shows the worries that OH's' have.

Royal, how was the taxol for you? I'm having 9 taxol after FEC but I don't know much about it apart from it being weekly. Does it feel relentless having to go every week?

Bonjour buggerpink! I am on CMF at the moment (had second chemo last week). My oncologist said it was what was used before FEC came in and that FEC wasn't a great improvement on CMF.
I had eight cycles of Epirubicin, by itself, immediately before that. It merely held the TMs at the same level, but also made me very anaemic - needed red cell blood transfusions every time.
Before that I was on Capecitabine, which worked well for a while with fairly minimum SEs (hand, foot stuff mainly). But then the TMs started to go up.
None of the hormone treatments, so far, seemed to have worked for me (Letrozole, Tamoxifen, Exemestane) and gave me SEs that make me feel about 90 years old ...
Hopefully, there are still a few more treatments around for us ... prefer those that don't take the hair away ... my hair is now growing back on CMF after I lost it on Epirubicin.

sounds beastly,all of it lily - my oncs. don't use TMs, just rely on scans and how I am feeling. I had capecitabine to start with which worked for 18 months - v red hands and feet though,but very doable. After progression I had 6 docetaxels,was going to be 8 but progression after 6. Exemestane for a year and now EC. Am sure there will be other stuff (drugs) coming up for us and yes, would be nice to keep hair ! Am thinking of trials too- have been seen by Marsden and can be referred by my team if I think I would like to do that. Sending you a big hug xxxx

Bugger - my Oncologist is head of the breast unit at Addenbrooke's (and ex-Royal Marsden), so I think (and hope) he should also be up to date on any trials. He's said that he will go on to these when I've tried all the existing treatments. There's plenty of research on BC going on at the Addenbrooke's bio-medical campus and elsewhere around Cambridge, so am trying to keep positive!
I've really not felt too bad on any of the treatments, apart from the hormone tablets and have kept working pretty much full time throughout (apart from initial Docetaxol, which seemed to be strong enough to fell an elephant). The Docetaxol was successful in knocking out the cancer cells in the breast, but the naughty ones in the bone marrow don't respond as well!

mysillydog i had 12 weekly doses of Taxol (Paclitaxel) and it was way easier than the AC which I had every two weeks.having to go every week is a bother but as the SE are close to none, it is a small price to pay:) look out for achy bones and tingly fingers ( nerves) which are the classic SE but I only started aching towards the end and no tingly sensations in my toes or fingers. Another good thing is if your hair has fallen out, it can grow back with the Taxol:) mine started growing while I was on it but not m eyebrows or eyelashes.. Those only grew back out after the chemo stopped. Best of luck!
Thanks mrs for your kind thoughts. I noted what you said about Tamoxifen as I should be starting it after the rads( was told i could start while on rads but i preferred not to!)

Thanks royal. It does seem like Paclitaxel will avoid the Tax Truck hitting.

I have an appointment booked for an echo the day after my final FEC. I tried to change it to the following week, but they had no appointments. I'm feeling a bit worried that I will be too poorly to go, or that my results will be dodgy. I seem to find climbing stairs etc harder in the first week after chemo and then it eases. Hopefully its just me worrying about nothing.

Thank you v much for the tamoxifen info, mrsrhod.

Hello, can I join please? I was diagnosed with breast cancer last Sept and started chemo a couple of weeks later. Just finished 7 sessions of chemo (3 fec and 4 docetaxol,herceptin and Pertuzumab) and am waiting now for a date for my wle and snb. Have only just found this thread and although none of us want to be here its nice to have others who understand what we're going through.

Welcome rover.
Hopefully you'll get a date soon. Can I ask what Pertuzumab is? Is it a type of chemo? Not heard of that one.

MySilly- that's a bit rubbish having to go for your echo then. Am not sure it will make much difference to the result but I understand the effort of getting there. Do they have lifts nearby rather than the stairs. I used to have to go in the lift for first two weeks after each chemo.

Thinking of all doing rads, chemo and recovering from surgery at the moment.

speedy As I'm her2 positive its one of the biological therapy drugs like Herceptin, apparently it stops the cells from getting the messages telling them to grow. Well I think that's what I was told, although my memory has definately suffered since starting chemo!

Hello gang!

NAILS post chemo anyone? Finger nails in a right state; toenails not so bad. Any tips? I think that may be a pun of sorts

Tried false nails - and glued myself to myself eventually. HOpeless. Been to the nail people (can't think of the proper name: chemo brain is real, folks) and they said 'just leave them to grow out'. This means I have to 'just leave them to grow' when I put my hand in my pocket and ... well, let's not scare anybody.

Welome rover and hello to everyone else, hope you are all having as good a week as possible.

I can empathise with the nails springy, but don't really have any advice. Mine are a real mess, with most of them lifting from the nail bed at the top. This allows dirt underneath which looks horrible and it's hard to get out as it goes really far down the nail. They also have four horizontal ridges across them (one for each docetaxel). I have put nail strengthener on them and clear polish to stop them flaking and breaking so much but other than that I'm just waiting for them to grow out.

Welcome rover, but sorry you need to be here. I hope you get a surgery date soon.

Waving to everyone else :)

Thanks for the welcome everyone.
fresta how long ago did you finish your chemo and when did the ridges start appearing? So far my nails haven't been too bad but I'm not sure if it's all going to catch up with me soon and my nails will go the same way as my hair did when I was having my fec chemo and one day it was fine and the next day it wasn't!

Evening all, welcome rovercat
I've had a fairly rubbish day today, been to the hospital to get my results post SNB & WLE. Good news was they got the tumour out - not quite the margins they wanted but enough to scrape by without further surgery (mastectomy). Bad news was the sentinel node was cancerous (not a huge surprise really as the tumour was 40mm in the end, the scans etc had shown it to be about 16mm so it had been hiding really well )
This means I have to decide if I want an ANC or radiotherapy to the armpit? I'm a bit thrown by the fact that it's my decision and they don't seem able to recommend one or the other?? Also means chemo, which I really, really, thought I wasn't going to need and while I was fine while they were explaining the fact that there was a 7% better outcome with the chemo, and the fact that I am young (woo hoo to be young at 47!) and having young children makes it worthwhile, I got really upset when I realised that the "7%" was a 10 yr survival stat, not a recurrence of cancer stat. I simply hadn't thought like that . So naïve.
So, they rang almost as soon as I got home and I have a bone scan tomorrow (!) and a CT scan hopefully next week to see if it has spread beyond the lymph node. Still sore so will probably get the GP to sign me off till I get the next set of results in 2 weeks (or is that a slippery slope and I just need to get back to the office??)
Sorry that was a bit long and me, me , me, just needed to get it down somewhere.