Not sure what the oncotype thing is so I'm going to say no. The oncologist did show me my prognosis using the predict tool, chemo increased my 15 year survival by 11% which seems tiny.
Like you post surgery (and honestly pre surgery) I felt fine, that's the real kicker about this cancer I suppose, it hasn't ever made me feel ill and wouldn't have done for a long time, but the treatment will, so it ends up not feeling like treatment at all but some kind of horrible torture. I keep directing my anger and frustration towards the doctors (passively, I hasten to add) but it isn't their fault and I know they're trying to help. I just resent the fact I seem to have no options other than accept the chemo and all the side effects and probably lose my hair for something that may never have been necessary, and no one will ever know if it was necessary or not. In a stupid way it would be easier if I did still have cancer as then there would be a tangible goal and something to actually see being destroyed. Abstract like you say, is right.
I have to get my picc line removed and reinserted as well, as that was causing a (second) issue with my heart, mine is on Friday, absolutely dreading it as like you I have such tiny veins. I'm really worried they'll put it in my chest now, which I was hysterical about last time so he put it in my arm, but I'm worried since my arm one has failed on me, they'll do the chest, which I really really didn't want.
Good luck for tomorrow Lisa...hope you can get on top of the virus tonight XX They are going to try and get a new PICC line in tomorrow ready for chemo on Friday...so am crossing my fingers that my tiny veins won't let me down again!
Vaneysha- sorry to hear you are going through all these decisions..if only we had a crystal ball life would be so much more simple, as evaluating risk when you have been on the wrong side of the statistics is really difficult.
You are HER + and grade 3- did they do an Oncotype Dx on your tumour, or did they use another predictive test? Like you I am having adjuvant chemotherapy because of a high risk of recurrence (of >30% according to Oncotype DX)...however like you I don't know if there are any cancer cells left in my body or not, as I didn't have any lymph involvement, so it feels really abstract. I feel pretty healthy and energised after surgery, so it is really hard to think about whether or not there are still cancer cells floating around. I wonder if you should just try the first one and see how you go...as you could stop if you found it unbearable..they can't force you to have treatment. I think all of us on here have found the wait worse than the actual thing; though I am guessing they will be extra careful because of your heart (and that is a really good reason for not going ahead with it or stopping after the first treatment).
KC- half my ladygarden (Deb's term!) fell out on day 14, and then half my head hair fell out on day 15, then it has stopped again....it literally fell out for a short time. The full shave was a relief as it was really itchy and annoying. I am guessing the same will happen on round 2- Debs can tell us!
LOL- about me virtue signalling about my exercising...I think it is more to do with burning off nervous energy and all the food I have been eating as I am at home more (I think I am eating more this week as I am enjoying the last few days of food being delicious and edible!!).
Vaneysha - I’m so sorry about all the difficulties and completely get the dilemma. RE the cold cap, I’m 5 weeks into chemo with a cold cap and I haven’t lost any hair that I can see. My hair’s pretty thick and I always lose some but it hasn’t increased. I also find the cold cap very tolerable. I put on a tiny bit of deep conditioner after I wet it before they put the cap on and then come home and wash it. I wash it twice a week and let it air dry and don’t style it beyond brushing it. Take care!
Hi VivMc and other forum members can I ask when did you start to shed your hair ? How many days after 1st chemo ? Just trying to get prepared
you all look fabulous by the way !!!
Love KC xx
Hi lisa sorry to hear about your A/E trip today I've started with a weird throat tonsils feel sore but no temp , mouth is rough and odd and I'm not sure if it's just the chemo attacking cells , I will follow your lead and keep an eye on my temp and ring if things dont settle . This chemo bingo card of symptoms is a strange thing , fingers crossed for tomorrow for you great news your cell count is good 👍 let's hope you get another ticked off xx KC xx
Lisa, so sorry you ended up in A & E but happy it wasn't anything serious in the end.. I had to go to hospital (from ringing hotline) after 1st chemo as hadn't pooped for 3 days.. it was a Sun day and thought they would just tell me what to take but ended up in hospital for 3 hours having bloods etc and felt like I was totally wasting everyone's time but nurses were lovely and never made me feel bad..
You did the right thing especially with temp. Glad bloods are all good and you're ready to go for next round!!
Hi Vaneysha, sorry you're still going through all this turmoil, especially with added heart issues. I am guessing you are getting the herceptin despite having lumpectomy to reduce the risk of bc recurring. Hope you get it sorted soon. Sending hugs
Thank you - these kinds of stories are the kind I need to hear. I know scalp cooling isn't always effective. Also I've noticed they all keep using hair loss as a broad spectrum. To me hair loss means total hair loss. But they seem to use it on terms of even hair thinning. I can handle hair thinning. My hair is thick (less so now unfortunately, combination of stress, not eating and postpartum hair shedding) but I have enough and can spare a bit.
I don't want to live in constant fear of cancer returning, and chemo/herceptin alleviates chances of that happening somewhat, but it's no guarantee. I'm constantly flipping between deciding it isn't worth the risk and having the chemo, to it being too many side effects and detriment to mental health and not wanting it. But if I don't have it, my anxieties aren't suddenly going to disappear, they'll just increase. I just don't feel I'm in a position emotionally to make the right call. I don't want to regret my choice either way, but I think I will, whichever choice that ends up being. If I wasn't her2 positive I don't even think I'd need the chemo at all, clear lymphs etc, clear margin of lumpectomy. Just this her2 making life so much more difficult.
So sorry to hear all that you’re going through Vaneysha. BC is hard enough, chemo harder and then to have additional worries about your heart and all the indecision must just be awful.
I met a lady recently who did cold cap and has a full head of blond hair still. From what you have said, your hair is thick so if it thinned a bit it shouldn’t notice as much as it would on someone with fine/thin hair (like me!). It definitely can and does work for some, so there’s no reason you wouldn’t be one of them. That’s if you and your combined team do decide to go ahead of course.
Sending you hugs x
Oh thank you lisa. I've been following this thread with every new post and really sorry to hear you went to hospital. Really hope you are feeling better soon. I've just posted a new thread on the chemo forum because unsurprisingly I'm freaking out all over again. Was meant to start chemo today but heart weird and turns out I have something called long qt and weakened heart??? Cardiologist said on Mon no chance of chemo any time soon and frankly I was relieved, but then yesterday I got called saying yes chemo going ahead but next Wednesday now not today. I was really upset and now freaking out all over again. Don't want it. They've removed the EC completely and will now be having 12x weekly paclitaxel along with herceptin. I just don't want it. I don't even have cancer since the lumpectomy. It is a sledgehammer to crack a nut in my view. I was after reassurance that the scalp cooling might work, just wanted some hope, but the person I asked wasn't very reassuring so I'm just all kinds of upset. Cancer and a heart problem both within 3 months and I'm 33. Low day today so genuinely....thank you for caring x
I’ve had a fun 4 hours in A&E today after my temperature went up to just over 38 this morning. Once again, I am amazed by and grateful for all the brilliant people working for the NHS. I was seen straight away and they were incredibly thorough, with blood tests, IV antibiotics, even a chest X-ray. My white blood cell levels were fine and they think the temperature is just from me having a cold, so home again now. I felt like a bit of a fraud being there with just a cold and temperature, but the nurse on the chemo helpline said I definitely had to go and not once did any of the nurses there make me feel like I was wasting their time, they were all incredibly kind.
Next EC due tomorrow and as my white blood cell count was OK they have said they will most likely go ahead, but will confirm when I get there tomorrow. Early night tonight and fingers crossed for the morning x
Aw, beautiful photo Debs.
Denim, happy to hear all went well with 1st Chemo, you will def dip after -5 days when steroids finish and neutrophils at your lowest.
Not sure I could have done any cardio so you're doing well.
Helen, you've just put me to shame. I feel I have achieved by just walking round the village for 30 minutes, even on my 'normal' week. No way would I have energy for anything else apart from cooking and cleaning. I guess if you were really fit before Chemo it would make a difference. My only excercise before was walking the dog as teaching full time was exhausting enough, ha ha.
My legs were so shaky yesterday (day 14) I didn't even manage a walk.
Hope everyone is doing ok 😊
Beautiful picture Debs!
Denim...day 5 and 6 was when I dipped as well...it only lasted a few days. From what everyone says, it is the steroids leaving your body,
I managed to take the dog for 30 mins on my worst days, but otherwise didn't get out of bed.
Today, I have taken the dog for an hour, cycled for 30 mins, done an exrecise class and a yoga class- just trying to squeeze some activity in before I am brain dead again!
Really kind of you!
The chemo day went fine - the cold cap gave me a pressure headache eventually, but I managed the cold surprisingly well. I felt pretty alien after the EC, out of sorts and a bit tired, but otherwise not too bad. Day 2 and 3 I felt nauseous and eating/drinking has needed to be forced, and low energy. Today is day 5 and mid morning my head became fuzzy and my energy levels nose dived!! I have been trying to do a 20 min cardio session in the gym every day, but today couldn’t manage to get to ‘cardio’ for long at all, and haven’t moved off the sofa since!!
How does this match your experience with your first EC? How are you doing since the 2nd session?
Great news Chris, glad you are feeling better. I had flu last year without chemo and that was bad enough...
Keep getting your strength back for the next one..
Hope your cold gets better soon too Lisa
Hi Chris , yes mine same day 9.30 bloods 10.30 see onc ,11.30 chemo longer day , I have a family wedding in London right before Christmas so travelling on the 20th and home the 23rd ( we are " up north" ) so probably going to be a bit tough but I really want to go and I'm homding out that 2nd time I k ow what to expect, will check with onc of course and take numbers etc but I am a tad nervous but I will only do what I'm capable of .
So glad your rallying you've had a tough Initiation into chemo land Chris take care xxx KC xxx
well back in to the land of the living, god been a tough few days, still not 100%, but getting there.
Hope everyone ok in chemo land and looking forward to Christmas
I have 2nd Fec on the 17th so hoping I will be ok for Christmas Day.
KC I said yours the same day?
Lisa hope your cold goes soon
sending hugs 💕💕
Lisa, please tell your team about cold before next chemo 👍 just keep safe during chemo, sorry to be clucky mother hen but you have to be super careful please during chemo ❤️💕💕✨✨Shi xx
❤️Oral thrush is common and will need fluconzole from your team 👍 please ring your rapid response and get tablets 😘keep safe, if you’ve not already got something from your team 💕💕✨✨Shi xx
Ha ha, love it Helen. I would totally agree with all those scenarios...
And poor you Debs, oral thrush oean't sound great...😔
Arm pain could be from injectiond, I got leg pain from mine...
Oral thrush sounds **bleep**ty.. Our poor little bodies are being put through the wringer...
Is the arm pain from the filstragram injection.. As my lower legs were twingey?
Just had a chat with my friend about 'on the bright side, you could be.....'
We got as far as...
Stuck in a lift with Nigel and Boris...
At a never ending Coldplay concert...
On a date with Prince Andrew...
I realise these are personal to me and some of you may enjoy these.....
Hello beautiful bald and nearly bald ladies.💕
I'm loving all the photos and chat.
My worst side effects were def the woozy head and heartburn and water tasting like chalk and that nausea in the pit of my gut...more? Ha ha
I drove my daughter to work today and was very excited. 1st day this cycle I have felt safe behind the wheel...
Def feeling brighter this week and wooziness gone.
I def was feeling a bit nervous before my 2nd one Helen and Lisa as I knew what was going to happen but now I know everything was just that little bit more bearable and you know there is some good days in between..😊😊
Lots of hugs xx
I ended up having to get extra meds as I’ve got oral thrush and a bugger of a sore throat today, also feel like I’m not really here and painful arms as if I’ve had injections.
Yes.. Your mouth being stripped of its lining so it feels rough.. That does get better again. I am sure that is why food tastes strange, that it must affect your taste receptors on your tongue! I need to look it up as I actually do research on stuff like that in my day job!
Yes.. And feeling trippy... I described it to someone as feeling a bit alien in your own body.
I always feel trepidation in advance.. then I just crack on with it.. Just waiting to wake up from this weird breast cancer dream 😂
Worst side effect = nausea, which floored me on a few days.
Second infusion this Thursday for me and I don’t feel ready either, although at least I know what to expect this time.
I am coming down with a cold today, despite hiding away, I’m all snot and sore throat. Temperature is ok though - small mercies 😊
Hope everyone is doing ok x
Hi Helen , I'm with you top of the list constipation , 2nd heartburn and feeling totally off kilter, wooshy spaced out . Tonight the roof of my mouth feels strange rough not smooth however not painful and boy have I slept today !!! Mind you my nan always said sleep was the best medicine .
Helen I'm sure all will be ok Friday at least you know what to expect and others have said 2nd time wasnt as bad so keeping fingers crossed for you , enjoy your next few days of freedom but you will be rallying round soon xxx KC
Looking beautiful Flou! We need to all go to a Star Trek convention 😂
Hope Chris and KC are getting better ❤️
I am going for my second shot on Friday and am already feeling reluctant.
I am currently enjoying the simple pleasures in life such as tasting food, sleeping, pooing and having a working short term memory!! Seems a shame to lose these again in a few days.
What is everyone's most annoying side effect?
For me it is a toss up between weird tastes and constipation....
Hi Lisa, I think we can take the metrocloprimide for 5 days post treatment- that’s what my prescription label states, however, if after those days your still experiencing nausea then I’m sure it’s fine to continue them. I also take a 5 day slow release antiemetic called Emend one hour before infusion. I’m truly thankful for these little pills and the research that goes into helping manage such effects. My mum had FEC 2011 and was so poorly with it.
Day 4 constipation- now on 4 docusate daily. Same as cycle 1, after a week or so it settles down.
I had some left rib pain during cycle 1 but nothing in the shoulders like others have described.
Ive had some vein tightening in my left arm-chemo arm, it’s a bit like the cording you experience post breast surgery. Been massaging the area with a light moisturiser.
Main symptoms the last few days has been hot sweats!!! Wow how they’ve upped their game. A little hand held fan has been an essential part of my kit. I’ve never experienced anything like this. I guess I’m in chemo induced menopause.
Hope everyone is feeling a little better today, and the antibiotics kick in to help those with the flu
I really feel for you Chris. I hope you have plenty of people looking after you and that you feel better soon x
Hi Viv and Debs
You beautiful bald women.. I have joined your ranks today as I was moulting all over my Dads house, so my lovely sister gave me a shave. Xxxx
Hi Chris and KC
Sending hugs... This is the worst bit, so hopefully you will pick up soon. I totally agree about the constipation being one of the worse things.. But it should start moving soon! Really bad luck about the flu... We really are all having chemo at a difficult time of year xxx
Chris sending ❤️ Please keep eye on your temp and if you don’t feel right phone rapid response, keep safe ❤️💕💕✨✨Shi xx
I had wierd aches and pain. My legs and feet one day and all day Wednesday my teeth were so sore!!
I had aching shoulders last time round and really sore breast bone...
I'm so sorry you are feeling so rubbish Chris, can't believe you have flu, hopefully having had the jab means you won't get it so bad...😔. Get better soon..💕
Debs, you look fab, you rock the bald look.
Lisa, so good you are feeling better and will have some normal days before the next lot.
I just get so tired doing anything, cook lunch then have to lie on sofa, go for a walk, go lie on sofa, and so on..I'll be like an 80 year old by the time I finish chemo, ha ha.
At least I've ditched Gaviscon for the time being.
My sister bought me a silk pillow case for my birthday and is is the best present ever as my head seems to feel really hot, even as it's bald. It's very wierd.
Everyone else, too many of you to say all names, have a lovely Sunday
well just spent 4 hours in A&E as feel terrible, head banging sinuses all up, green phlegm yuck and god the headaches, ended up in bed at 9 o,clock last night as felt so bad and didn't sleep so phoned the help line this morning, the nurse told me to go to get seen.
Have had the lot blood tests, swabs from mouth and nose, ECG and chest x ray, Only turns out I have got the flu great and I got the flu jab before starting chemo, just shows you.
They made me sit with a paper mask on whilst I was waiting for all the results.
Have ended up with antibiotics in case any bacterial infection there as well.
Well ill that's me off to bed for a few hours,enjoy the rest of your day, what ever your doing
I hit rock bottom days 6 and 7 and can honestly tell you it gets better quite quickly after you’ve hit the low.
Re. the constipation, now they’ve prescribed something hopefully it will get moving quickly too. I didn’t have the shoulder thing, but I know my mum did (years ago when she was on chemo); when I see her next week I’ll ask her about it.
I’d also say, if you can eat, eat! I was so nauseous I could hardly eat anything and I think it made my mood and energy levels even lower.
You’ll be feeling better before you know it xx
Hi All my first EC was Tuesday so feeling bit low today , nausea hasn't been much of a problem they gave me something different to met for 4 days , I now have the metoclopramide if I need it took one this morning , I have been floored by the silliest thing , constipation !!! Its been 5 days, it's like my insides shut down, got something prescribed now but had a major meltdown yesterday over it , today's symptom is aching , specifically shoulders , anyone else feel like that ?? Plus I want to eat and dont want to eat if you get my drift lol yeah bonkers I know what this stuff does to you. Taking the lead from you girls great to know things get better
Thank you xxx KC
Lovely new knits Debs 🧶😊
Well dome on bald shopping Viv - I actually just meant to type well done, but I like the well dome mistype better 😂
You are fab!
Day 10 today and I felt pretty ok yesterday so am much happier knowing I’ll have some good days as well as the bad.
Like you Rachel, I have been taking metroclopramide (3 times a day since day 1). I’m too scared to stop as the nausea was so bad. I think I might need to check with the nurse if it’s ok to be on it continually, as they didn’t give me enough for my full 14 day cycle. I’m on EC; what’s everyone else doing to cope with the nausea?