Millasmummy - I had an ultrasound after my second FEC (am currently in zombie phase of 3rd FEC) so I got the results straight away. I have 3 tumours (2 small and 1 big) and both small tumours had shown some shrinkage. They couldn't measure the edges of the big one either because the breast tissue was too dense or because the tumour has begun to break down. On hearing this I decided to have a little feel of it (hadn't dared to since the start of chemo) and the texture does feel different, so I think it is gradually turning to mush (apparently tumours either disappear by shrinking or becoming mushy). My oncologist told me to expect little from FEC (a mm or two difference) so I was really happy to see any changes. He told me that it's going into T that you start to see the big differences (which I guess is as much due to the time lapse as the change in drugs). Fingers crossed your MRI gives you a good result, though don't worry if there's not a huge difference at this stage.
Marije - I'm really glad your onc is giving you options rather than just pushing you down one path. Personally I would always go with the option that gives me the best stats, but it's very easy for me to say that when I'm having a relatively easy ride with FEC. Could you do one T and see how it goes? My chemo nurse told me that often people find one worse than the other (FEC or T) so you might find T a slightly better experience. Have you called the Breast Cancer Care helpline before? It might be good to have a chat with them about your situation, or perhaps see if you can get some counselling locally, so you can talk it through face to face with someone.
For those of you thinking about going on a Look Good Feel Better day, I've been on one today and it was a lot of fun. I've written a full review of it here: https://gettingabreastofthesituation.wordpress.com, including a list of the contents of the freebies which are well worth having.
Well worth booking up. The website lists the venues that host them along with booking phone numbers: http://www.lookgoodfeelbetter.co.uk/workshops-and-advice/dates-and-locations
Hope that helps.
This is just off the top of my head as I really need to think / maybe read up to give you a proper reply.
Yes, I am cold capping and still have about 30% of my hair (lost the crown). The hair loss has just about stopped on T and I think I saw a little bit of regrowth starting.
I'm doing far better on T (and Herceptin) than I ever did on FEC. That said my first T & H was harder than my 2nd. My guess is that I had not recovered from the FEC, even after a 4 week break or It could be something else different like the anti-nausea and vomiting meds being sorted out finally or the claritine I am taking now.
During FEC I met with my Oncologist and she agreed to cut the dose of the T to the minimum to see how I got on. She also agreed that if I was not "recovered" after 3 weeks on either FEC or T I could extend to 4. So I've done both - 4 weekly cycles on my last FEC and both T's and a smaller dose of T.
It does seem to have made a difference for me. I'd not like to continue the FEC nightmare. Been trapped in bed for a lot of the time with multiple severe side effects. Some of these I suspect were also from the early and totally useless anti-sickness meds I was given.
Wondering if these ideas could be incorporated into your "last" FEC or your T's if you decide to go ahead?
I incorporated the 4 weekly cycle into my earlier FEC's as there was no way I could go through a 3 weekly cycle. I realise that the cycles are to hit cells at the optimum time but I just couldn't do it.
I'm wondering if you could benefit from a drop in the dose, a drop in one of the drugs (i.e. a EC rather than a FEC), a longer break? I can quite understand of course, why you would want to stop Chemo.
It's hard to say about the T for sure as FINALLY my clinic has got my nausea and vomiting drugs sorted out (ish) and I am now better after my second T than I was at any time (even week 3 or 4) on FEC.
Hope this ramble helps. Just wanted to share a few ideas for your consideration and maybe to discuss with the experts if you feel like it. As I said just off the top of my head and incomplete / probably all wrong.
That's interesting Sue, thank you.
That's about the same percentage they gave me. Funny, as sometimes it doesnt sound like much at all (I wonder what statistics there are for being hit by some other accident within 10 years!), and other times it sounds like a lot...
I'm going to need a few days to think about it.
Thanks for all the support ladies. I really hope you're all doing well xxx
It is a difficult choice to make, considering the possible side effects. It might be worth remembering that each and everyone of us has different side effects. So you may not have to go through as many, as some.
Although I am now on 6 x FEC, followed by radiotherapy and then Letrozole for 10 years - I was given the choice whether I wanted to go ahead with the adjuvant treatment or not.
Considering that going through all of it - it gave me an 8% better outcome over 10 years - It was a no brainer for me. I really would like to collect my pension one day, lol.
However, it has to be your choice - as you are the only one, who has to go through it and be responsible for the relevant outcome. It does sound harsh - unfortunately that is what it is. there is no softer way of saying it.
Hoping you make the right decision for you and your boys.
Flopsy, thanks for that, that is interesting. Are you doing the coldcap?
I just had my meeting with the oncologist today. He gave me two options basically: OR continue with the original plan (so 3x T to go, herceptin and Tamoxifen), OR have one more FEC and stop (but still have Herceptin and Tamoxifen). Oncologists are quite the statistics and numbers people, so he pointed out that by missing the rest of the chemo would set me back 7-8% benefit overall...
I am in such a dilemma!! My heart and feeling say 'stop', but my mind says to keep going for my boys.
I have decided that if I do do the three T's, I am quitting the coldcap, so that would be me bald then (not the end of the world, I know, but a bit frustrated after fighting to keep it the last 3 times).
If I do one more FEC, I'll put up with it one more time..
I know I can't ask you for opinions on this, but what do you think of his proposals?
I've just had my second T. For me the T is going better than the FEC. Please bear in mind I am doing Herceptin at the same time and I don't know which side effects are with which. There are also the effects of the anti sickness and nausea medications but I think I have worked out now (as we changed meds) which ones they are.
Main side effects for me have been
1. continuing nausea and vomiting (but touch wood, we may have stumbled across the best medication combo for that now)
2. Muscle and "bone" pain - especially my spine from shoulders to hips
3. Sleepiness. lethargy, weakness and fatigue - I am permanently exhausted and also sleeping much more at night. One of my anti-sickness meds also does this but I had the long sleeps before I added it.
4. Vivid dreams
5. Sore throat and glands
7. Chemo brain - forgetfulness. I genuinely couldn't remember what day it was last week after my 2nd FEC
8. the odd rough patch of skin
1. Hair is already beginning to re-sprout 9 weeks post last T&H
2. Less hair loss of existing hair than FEC
3. My nails are all there so far...
4. Less infections or breakouts of cold sores
5. Sense of taste and smell are SLOWLY showing signs of coming back
6. The veins and muscles of my arm used in chemo don't hurt any longer
7. Skin generally in some ways feels better (as in some of the natural oil may be coming back)
Hope this helps. I know that a lot of ladies have more severe side effects on T and in particular are in pain or their stomach problems are worse. I feel as if I am still recovering from the FEC (still have side effects from that) and have been lucky on the T.
Also read somewhere that Claritin (the anti-histamine ) was good for T side effects and just by co-incidence I have been taking them. No scientific evidence for this though. "Just" another patient.
p.s. I'll add to the side effects list if I remember any more. Brain fried.
Can't help you with the change to T, Millasmummy as I've got another 3 FECs to look forward to. Sincerely hoping my veins will hold out ... 😕
I've just had to shave my legs again which seems grossly unfair - is anyone else still doing this? I had thought one of the very few (if only!) bennefits of chemo would be the lack of 'personal grooming' necessary and yet I'm still needing to do this? Very annoying!
unfortunately I cannot answer your question re the T - as I am on FEC all the way through.
Sorry to hear that you are struggling - you are now more or less half way through and I do hope that they can find a way to make it easier for you.
I don't think you are in denial or are under estimating your challenge. Your team would not be open to alternatives, if it was so.
I do not know your diagnosis and what your receptors are, nor whether they have told you your 5 and 10 year prognosis of recurrance. If they have not, your appointment may be a good time to ask.
They told me, when we made the treatment decisions. It was helpful - and I know, despite being a grade 3 that I shall still be here for a very long time to come - unless I get hit by a bus, lol!
It is so scary to be diagnosed and the rollercoaster of tests, scans - results, op, more results goes rather fast, without sometimes considering that we have to understand and come to terms with it all.
It might be an idea to request counselling to help you through some of your low moments and your fears.
Unfortunately in some areas there are waiting times - but the sooner you get onto it - the sooner you can get some help.
Thanks for your messages. Bagpus, it's hard when you have little ones isnt it. No respite!
And this whole thing is so bloody two-sided: you WANT to live, in the long run, do everything you can to live a long long life, for your children. And at the same time, I want to be there for my children NOW!
But ofcourse, it's about the long run. I am a little down today: I cannot bear the thought of dying. Just saw a sad film anout someone's mother dying of cancer at 45... And it just hits home then doesnt it. Most of the time I think I'm in denial. That I under-estimate what I actually have../ had... Just the thought of leaving my babies without a mother is tearing me up right now. Possibly 'finally feeling' because husband has taken the kids out for a few hours, and the house is quiet and I can hear my own thoughts! Haha.
But how are you all? Anyone gone from FEC to T yet? And how have you found it?
I'm so glad you've updated us on how you're doing, I've been wondering how you are. Are the mouth sores still really bad? I'm actually begining to think that the low feeling that comes with chemo is worse than the hair loss, and I never thought that I'd think anything is worse than that!
I have an almost one year old, so can empathise up to 50% with your situation - I can't imagine how tired you must be with a 5 year old as well.
I'm in a slightly different situation with the chemo in that I'm having it pre-surgery, so I can actually see the direct impact of it on my tumours. I think that helps my motivation a bit - it must feel quite demoralising at times to be having chemo when there's a good chance you don't actually have the cancer any more! Then again, if the chemo works 100% on my tumours, I'll be having surgery to remove something that isn't there any more!
You sound like you're being very sensible with making sure you understand all the options available to you and challenging the 'automatic' chemo regime. I'm sure it'll be very difficult and emotional to work out what is the right course of action, but if you use the experts to help guide your instincts you'll make the right decision for you.
Had my 3rd Fec yesterday. Nearly got sent home, because they werent happy with my arm: big hematoma (bruise) from a simple bloodtest last week, and corded inflamed chemo veins. Had the dr out etc, and then my oncologist, who gave the go ahead, but very slowly. Almost decided against the coldcap, as I am pretty bald on top now, and coldcap is absolute torture! But then I thought: 'I've come this far, and if I can keep the bits I do still have, than it's ok'.
I did have a little chat with the oncologist, and on Monday we have a proper meeting. Because I have to tell you: I am not so happy. I've had every side effect in the book, and most surprisingly I feel mentally quite down and zombie like. That last part is the thing that scares me most. And with two boisterous boys of 1 and 5, I am really struggling! I am up through the night and awake from 5.30. Husband is around, but even 'in the background' I am still there, and I can't totally ignore the boys!
So..... I am going to talk to my oncologist about 'options'. He's already said there are, so it will be interesting to see what he says on Monday. In our brief chat he mentioned people sometimes do 8 weekly Docetaxol (in smaller doses every week for minimal side effects), but I dont want to do that, mainly logistics. The other thing he said was perhaps 4x FEC and that's it, no T. I asked about Herceptin, which is usually given with T, but he says that can be given seperately. I almost jumped from joy! Ofcourse he said it does come with consequences, and he'll show me the statistics on Monday. There'll be a few percentage less benefits from the overal chemo. But right at this moment I would be so happy if that was possible! Personally I have always felt very anti-chemo, especially as it was 'preventative'. I feel that I had the operation, all cancer is out with clear margins and no lymph nodes involved. I will have had (most) chemo, then herceptin and Tamoxifen... SURELY that would all do the trick I think in my mind.. I am also a healthy person: eat well, dont smoke, hardly drink, make veggie juices and smoothies. Active enough..
I feel I'm done with chemo.
Again: I shouldnt be cheering too soon, as I dont know what he'll say on Monday. But I also know him as an honest man who is careful with his words and promises, and he wouldnt have mentioned that option if he didnt think that is even slightly a possibility.. , right? 🙂
I have made up my mind that if I only have to do one more FEC, I will do one more coldcap. But if I have to do 3 more Tax, I am going to give up and be bald! The coldcap is just too horrific!
Oh, but one more FEC would be so fantastic.... I can deal with that. My eldest will start school in August, and I want to be there for him. He was born 10 weeks premature, (doing great now!), but I get quite emotional at milestones like this. I want to support him. My youngest has just started to walk (he was 6 weeks premature), and real trouble, haha. He's such a cutie, but trouble because I cant let him out of my sight! He'll climb on chairs, windowsills...is into everything, wants to run out of the house, haha. It's a madhouse here!
Hope you ladies are doing ok.
I'll keep you updated with how Monday went..
just popped in, as I have the habit to, from the May thread.
Is anyone of you having challenges with your veins yet?
I hope not - some of you may - There are some postings re this on the Tips and Tricks thread
It would be great to find out, whether anyone else is having challenges with them - as mine stared post chemo 3.
what are you apologising for? You only posted about a blog of a person, who went through it!
I think - chemo, no matter what regime, is never easy - for any of us. Even those, who appear to 'sail' through it, will have their challenges. Some will talk about it and others will cloak how they feel. Many still believe in the 'stiff upper lip'. We are after all - and thankfully - all different from each other.
I don't know about you - I am somehow glad they did not tell me up front, how challenging it may be for me.
Perhaps I might have thrown in the towel, before I started? And I am saying this, as one of those, who have very few side effects, lol - apart from the fatigue. Wondering whether being on FEC all the way through makes it worse?
Just like with our diagnosis - it is one step at a time. If we knew all there is to know, right from the start - many would possibly struggle very badly. And, of course, with chemo - it will affect each one of us differently - so no one can really say, how chemo treatment will turn out for us. I remember well - after FEC number one and number two - I happily went back to work after my treatment - taking care to work from home during my neutropenic time - and thought - this is more or less a doddle - how wrong I was.
And - if we really wanted to know it all - we can always ask...and might not get any conclusive answers.
Being positive all the time can be a challenge - we are all fallible - and keeping the facade of being up- beat all the time, does take a lot of strength. But someone being positive about it all also gives me the strength to carry on, which is so very important. Positive stories are helpful for those, who struggle - knowing others have managed to get through all of this.
Chemo, no matter for whom - is not easy - who in their right mind goes to a hospital and has poison pumped into their bodies...if someone manages is easier than someone else - good on them - and I, for one - want to hear about it. It gives me hope and it gives me strength.
Belle, No need for an apology. It was the tone of the blog that annoyed me. It's not your blog.
My comments were about the blog. You are free to post what you like. We are all different and different things are sure to upset some people but be useful to others.
Thank you for all the support you give on these threads.
I'm really sorry my post upset you. That wasn't my intention at all and I wasn't trying to patronise anyone. I just wanted to provide an example of one person's experience. Please accept my apologies.
I'm sorry to hear things have been really bad for you - they've not been great for me either, I'm certainly not sailing through it. Are you nearly finished now or do you still have a way to go? I sincerely hope things are improving.
The problem with blogs (like the Fights Like a Girl) is it is just N=1 (one person's personal experience) and compared to my chemo journey she got off pretty lightly with side effects.
Personally I find it really patronising to be told not to worry or have the side effects minimised in that way (in the blog). The writer must know (if she belongs to forums like these) just how bad it gets for some people.
Are we seriously affected chemo patients being ignored or editted out of people's memory?
Hindsight is a wonderful thing and for me, I just wished I had know how bad it would get and for how long. Then I could have been better prepared - mentally and physically.
We simply don't know what is ahead of us sadly. That's just my personal opinion and others may feel differently and want reassurance. After all bad and serious side effects are only affecting a portion of us.
Quite understand that - there is no "one size fits all approach".
Just completed my 2nd round of Taxotere, yay, so relieved it went well. Like you Hazel, I was on high doses of steriods and antihitiimes before hand so felt a bit odd before, which may have taken to edge off to be honest.
No major side effects yet, apart from tiredness and off course the HAIR LOSS - very thin on top now, and since the cold cap this time, i hav'nt washed off the conditioner and my wig won't be ready not for 3 weeks or so. Didn't like the previous ones second tme around, I felt old and frumpy and the colour looked all wrong - sooooo vain:-/
Has this whole thing changed anyone for a more fiesty character - I surprised myself the other day at the hospital after being admitted and had a rubbish morning, so went for a little wonder around the hospital garden (in my gown), when a visitor came out (big and bold and very chavvy)and to my amazment - lit up a fag:-0 completely ignoring me! so i pointed to the sign and she shrugged her shoulders. I couldn't believe how angry she made me, especially when i did say something she said "what, i'm not giving anyone CANCER!!!" she left eventually after stubbing it out and thumped the glass window on the way out - just glad it wasn't my face, but felt so much better after my vent - how selfish!
Need to try relaxation techinques me thinks:-/
Big hugs x
Hi Alex - I'm not brave, I just couldn't be bothered with the mess as I had loads of thick hair. Lol!
Popkit - I'm using coconut oil from Holland & Barrett on my scalp. It's a bit sore and itchy with some red "spots/bumps", maybe the hair follicle?
Hope everyone else is doing well.
I'm off to do some ironing, then bath and bed, going to take a lorazepam to try and counteract the high dose of steriods I've had today for my second TC tomorrow. Quite anxious about it, just been keeping myself really busy all day so I'm absolutely shattered and hope I manage to get some sleep.
Thanks to everyone on the tips for vein care pre-treatment. I arrived yesterday with a heat pad on my arm and a bladder so full that I had to do a quick dash to the loo mid treatment hoping that my cold cap wouldn't defrost on route! I also made sure they kept my heat pad going throughout the treatment.
Result - painless treatment and no problems afterwards, hooray!
I'm cold capping to try and minimise hair loss, but I found much like everyone else that my hair started to shed around day 18-20 after first FEC and a lot came out in just a few days. It continued to shed throughout 2nd FEC, which was particularly difficult because I felt so emotional with the drugs, so if you're going to shave it I would suggest doing it so you have a few days of 'feeling good' to get used to it before your next treatment.
With the itchy scalp (or was that someone else asking about it?!) I've found my scalp itchy anyway and I haven't shaved it. I put a hypo-allergenic moisturiser on it (well, on what's left of my hair!) every morning and that has really helped.
Hope this helps. You sound like you're well prepared for the hair loss, so just take each day as it comes and you'll get through it.
I know quite a few of you are going on shortly to have Docetaxel/Taxotere after completing 3 lots of FEC and I seem to remember reading (though it is entirely possible that I dreamt this or made it up because my brain is playing LOTS of tricks on me ...!) that this was causing anxiety. I'm not surprised if this is the case because I know I'd be anxious - I'm definitely a better the devil I know kinda girl!
Anyway, for those of you who like reading the experience of others, this is a blog post written by Sarah of Fights Like a Girl comparing her experience of FEC and Tax: http://hbocuninformed.blogspot.co.uk/2014/10/everything-ive-learned-so-far-about-tax.html
Her final comment, to encourage you, is 'So, in conclusion - don't worry about Tax. Chemo isn't nice. Tax isn't nice. But you'll get through it.'
Hope that helps,
Oh, that sounds so familiar, I can't concentrate on books either....two sentences and I've lost the plot. TV is the same so it's sudoku's (and then only easy ones!) and Candy Crush for me too.
Can I ask you ladies who have already had a MX how long it took to recover? I'm asking as at the moment my MX will be mid/end november ( after chemo) and I really want to be fit enough to travel (including 1hr flight) for a family wedding just after xmas. Will that be do-able or should I ask them to plan the op in January? Any ideas/experiences welcome...
3rd AC tomorrow....only one more after that and then 12 weeks Herceptin/paxlitaxel. Hey ho, keep smiling all, we'll get through this.
Candy Crush! I haven't played that for ages, maybe I need to start again.....
WWF is just like scrabble (not wresting!) - I just like playing it don't really care if I win or lose.
I've got a massive stack of books that friends keep adding to but just can't get into anything. Even magazines are taxing my chemo brain.
Did you get a really itchy head after you shaved it? Mine is a bit itchy already pre-shave and very itchy when I wear scarves or wig. Any tips?
Thanks, K x
The chillow works really well for about half the night then it seems to warm up a bit with the heat of my sweaty head. So ends up getting chucked on the floor. We have a really small bedroom so it is quite hard to store. I bought it before I had my surgery in advance of chemo. It was brilliant after surgery as I got a nasty burn on my bum from the diathermy pad and used it to sit on and cool the skin down. These hot flushes are driving me nuts and I am woken every one to two hours through the night with them. The heat of the last week has been a nightmare with the flushes during the day too as I feel a bit bloated from the steroids and drinking so much water that my clothes are getting a bit tight and uncomfortable too. Everything is just so blooming uncomfortable! Will have to resort to wafting about in kaftans!!
Thanks for the link to the hot flush thread wil check that out.
I've found playing Words with Friends in the middle of the night helps as I'm finding it hard to concentrate on reading. Anyone else playing?