Today's goals ....put a load of washing in ......eat Cake! And aim to go out tommorow! Where is everyone based I am in Buckley North Wales very close to Chester 😊 hope everyone has a good weekend
Hi rizzer one of the thread was the organiser and everyone pm’d their numbers to them and they set the what’s app group up and took it from there. We went for something special in London because well why not 😁 don’t bother trying the ritz, they advised they couldn’t accommodate large group. The arch was utterly fantastic in every way, we had our own waiters and everything, we were totally spoilt and looked after by fabulous staff and the afternoon tea was divine. It certainly was the 5 star it claims it it and beyond. We hired an apartment in London and 6 of us stayed overnight too 😁 it was like being on a school trip again with mates 👍happy planning 😘💕💕✨✨Shi xx
Hi Shi, thanks for that. Sounds like a nice idea. How did you go about finding each other on WhatsApp? How did you organise yours then without everyone either providing too much info in the public forum or PMing on an individual basis? X
Dig in everyone, it’s around mid point on chemo you have to really focus on the finish 👍👍 start planning your meet up (do on pms or what’s app group) remember the threads are open to the world. It helped us oct17 gang we got so excited planning the meet up gave us all a boost 👍 we had 5 star afternoon tea in a private function room at the arch in Marble Arch London, it wasn’t that expensive and was a real treat as a special one off, anyway happy planning your meet up 😁 it is lovely when you all meet 😁😁 keep 👭everyone 💕💕✨✨Shi xx
Yes!!! I'm with you ladies!! I've been feeling really frightened lately and I'm not even close to half way through yet. I find it particularly hard when I'm recovering from chemo so less busy and feeling generally rough. I'm feeling physically better now and have had a lovely day out and about and my mood has been better too.
Thinking of you all, it's hard!
Yes, perhaps it’s something to do with being almost halfway thru’ chemo....and ruminating too much about what’s in store the other side of it. Plus the drugs make you less resilient to intrusive negative thoughts, I guess.
On one level it’s a comfort to know I’m not the only one, but also sad that some of you are feeling so low too. Big hug to you all.
It’s strange. I felt like I’d made progress ‘living in the moment’, but I’ve definitely regressed to getting that chilling fear where you don’t think you’ll be one of the ones to make it. Much like I felt just around and after diagnosis.
I bet it’s a stage that lots of people in our situation go through. If this has taught me anything, it’s that my mood can and will change again.
A great big holiday sounds like a brilliant idea, Adelemck.
Sending you all a shed-loads of love Xxx
People keep telling me it'll soon be spring, I'm halfway through, that soon it will be over and I'll feel better...but some days I just can't believe them.
My GP told me to just focus upon each bit of the picture to avoid my head exploding. (That's easier said than done when you don't know the new universe you're entering!)
I think we're all struggling with the bigger picture. It helps me to think of the women I know who are years post-diagnosis and how they are able to look forwards. At this point it's too much to get my head around, but hopefully that will change for all of us.
Madcatlady - nose hair v leg hair: there is a question that is never answered
True, silvertong, very true!
I never knew how much I valued nasal hair until it went west...
Must be something in the Air i have had a really low day today ☹️ I also have Crohn's disease and it's decided to play up! But on the bright side my son has just got a flat with his girlfriend only a few mins walk away from us - sending big hugs - no one knows what is round to corner but when my treatment is done I am planning escape in a lovely holiday 😊🥂
there must be something in the air because I have also felt this way in the last couple of days so quite tough to manage!
I can also empathise with you and hope we get more positive soon !
Rizzer- I have been feeling exactly the same the last few days. Feeling a little more positive as my SEs are subsiding, but I totally get where you are coming from.
Not sure what the answer is but I know we have to just keep going with this. My fear is that I go through this awful treatment and it comes back.
Big hugs x
Hi all, hope you’re all hanging in there, ladies.
Been struggling with the ‘fear’ last few days. Beautiful day in Sussex. Still can’t shake off the sense that my days are numbered, and that number isn’t a very high one ☹️
Now a McFlurry is on my list if the docetaxel gives me a sore mouth...hope yours brightened you up today 🍦
The tiredness really is a pain, and it's hard to describe it to anyone as it's not really like a normal tiredness.
Oh no! Have they kept you in or are you at home now? You wouldn't believe a cold could be so problematic, would you...
That's a good tip about the sore nose. I've got Vaseline everywhere and can't wait to grow nasal hair again. Why have I still got leg hair which I don't need, but no nasal hair which would stop me leaking like a tap with a broken washer?!
So glad you're feeling better and that your walk helped. I had lunch with a friend today and it lifted my mood 😁
Thanks about Monday. Will let you know!
so scary how bad a cold can be Debelina and well done on finding a positive! Hope your much better soon!
I am very tired this cycle but do feel brighter in myself and trying to rest as much as I can - was craving Ice Cream today so son drive to McDonald's for a McFlurry 😂 it was lovely!
Hi ladies.....just checking in......I had to go to hospital with a bloody cold.....going thru my 10 hour operation was easier to deal with than this cold.....I actually think I hate the having the cold than taking steroids
Buttttttttt on a positive note because I cant cope with feeling so negative.....my nose has been running so much it was raw and I couldn't find my Vaseline so I put some of the Iglu rapid relief gel that you use for mouth ulcers onto my nose and it stops the stinging immediately
Love to you all x
Hi Madcatlady, feeling a lot better this evening thanks. Got out for a long walk this afternoon and that really helped with my mood.
Good luck next Monday, will be interested to see how things go.
Yeah, homeward straight indeed!
The halfway bell is getting an outing 🛎
It may feel it's at snail pace, but we'll get there! 🐌
Thanks for taking the time to share your experience with docetaxel; it's really helpful to hear.
With FEC I felt particularly tired and low on days 4-8, but some of that was down to the filgastrim injections which left me hot, miserable and aching from head to foot.
Once I'd got past that point I gradually felt better (apart from the first night in hospital on the last FEC), so maybe the docetaxel will follow a similar pattern.
The chemo nurse told me there's less chance of nausea and sickness with docetaxel but I'll reserve judgement until next week!
It's interesting that each one of your sessions was different. I think that seems par for the course.
I've had 3 rounds of Docetaxel, Carboplatin, Trastuzumab, Pertuzumab. The first round was just docetaxel and Carboplatin.
The Docetaxel isn't fun, but it works. The SE were different each time. The first time i was just really really tired, the second was horrible, gut pain, nausea, wolley mouth, bad taste, diarrhea, generally feel really really crap. After that they reduced my dose and the third time was just nausea and low mood.
For the SE the only thing that worked for me was weed, but i dont like what it does to my head, so tried CBD instead. This also seemed to work but i was getting better by then anyway. I'm going to do it again net time.
The good news is that its temporary. I felt ok days 2-3, then SEs days 4-8, the getting better, not too bad days 8-9 then absolutely fine from day 10.
So dont worry too much, it will be ok and it wont last. Hope this helps
Sorry to hear you got hit by sickness just when you thought it was safe to come out of the woodshed....
How are you feeling now?
I'm having docetaxel for the first time on Monday so I'm wondering too how it will be. I'll let you know. As mine is TNC I'll not be offered anything like herceptin, so I don't know how it interacts with docetaxel in terms of side effects.
A trip to Exeter would be great if you feel up to it. I did my social work training at the university, stayed for a couple of years afterwards working, and loved it.
Hi Madcatlady, sorry to hear you have also been rough this time round. Saving grace is EC is now finished and we are on the homeward straight - yippee!!
thank you for the replies to my queries about fasting. Rizzer, impressive amounts of fasting! I know i wouldn't last that long, so i'm trying a 36 hour fast, from the lunchtime before chemo day to the morning after chemo day. I get proper hangry and cant sleep if i'm at all hungry so 36 hours is definitely going to be a struggle. I'd let you know if it helps, but to be honest it will be hard to tell. Each round of chemo has been totally different impacts.
I'm doing round number 4 on friday, then its over half way and only two more after that! We are getting through it. Start planning those holidays!
I have another question - has anyone had lumpectomy and radiotherapy or know about how long it takes for treatment or recovery?
My boss wants to talk about my return to work but i dont have a date for surgery, i dont know what type of surgery yet, i dont know if i'll have to do radiotherapy, and if so, for how long or how long the recovery takes or what the impacts are. I think my boss will just have to put up with my requests to be flexible for a long while yet.
I'm really sorry you're facing a brick wall in trying to get help for the side effects.
My breast unit seemed to disappear off the scene once chemo started so that may be the same for you, but if not, it might help to have a professional to back you up and intercede for you from the unit.
It's hard enough trying to get through the whole process without feeling as if your concerns and needs aren't being taken seriously. Are they just suggesting you simply put up with it, take over the counter remedies etc? I will be having docetaxel on Monday so I have a long list of questions to ask at the clinic on Friday, and one of the questions will be about how they envisage helping me get through it...I'll pass on any useful tips.
They're the experts in this and we should be able to feel confidence in them to help us manage this.
Sending you lots of hugs, silvertong. I'm with you 🐱
I'm feeling better, thanks, and much less emotional. It's the third week now so this is the best it's going to be before going through the whole process again. So this time next week I'll be back on the emotional and physical roller coaster ride!
Having said that, it will be T for these last three sessions so it will no doubt be a whole new range of side effects and a different fairground ride. I'll be asking lots of questions at my pre-chemo appt on Friday...🎢
How are you?
Hi all, just coming out of the fog of last EC. I was doing really well, very little se’s and was then floored with sickness and very low mood on Days 6/7 (thought I had escaped as was not ill beyond Day 5 on previous 2 rounds).
Next on the list is Herceptin injections and 3 rounds of Docetaxel (T) starting on 18/2. I’m starting to wind myself up about the se’s of T - will they be better or worse? I know we can’t tell and everyone’s experience is different, but I can’t help worrying about them at the moment (probably left over steroid mood also 😂).
I have 1st Herceptin injection on 18th, 1st Docetaxel infusion on 19th and my daughter desperately wants me to go with her to an invitational Sports Scholarship assessment for Exeter Uni on 20th! It’s a 3-4hr drive each way from home (hubby will drive) and she has to be there from 10-7, so it will be a long day!
We’re nearly there now ladies - I think everybody is halfway - we’ll get through this.
Stay strong 💪💕
Oh Silvertong, that's rough. Really hope you startto feel better soon. How many more rounds do you have left? Sending big hugs xxx
No joy at the clinic. Apparently everything is just a known SE of Docetaxol. Nobody wants to prescribe anything so sort yourself out Silvertong
The nurse did say that they would reduce the dose, but later had apparently spoken to the doctor (insert your preferred Timelord or voodoo practioner joke here) who pretty much said no, I should have the same. I didn't feel I could argue with someone who wasn't there, so on I go tomorrow.
Don't think we have any Yew trees round here, if there was I expect it would react badly with me
Hi madcatlady, how are you doing?
First cycle took them 2 x 2 (4 a day) on days 234. 2nd cycle slashed that to just 2 on day 2 and 1 a day for a couple of days. Now convinced it’s not withdrawal X
Hi rizzer and Debelina
It makes sense that it could be the steroids themselves causing the problems. How many days do you have to take them for? I've only been given them for days 1-3 on FEC, but this will change on T. (All I know so far is that I'll have to start the day before the treatment to minimise the risk of an allergic reaction.)
Really hope it's better for you. Obviously I don't know how I'd be with more steroids but I've managed ok without. Xx
Thanks frenchie. Yes, I think I’m going to suggest I take none after the IV lot with my next cycle. You live and learn eh?! X
Definitely speak to your oncologists about the steroids. I'm being treated in France and currently doing EC. I just have a dose of steroids with the chemo and then no more after that. Obviously I do have some unpleasant SE with the treatment but have not experienced the nasty withdrawal symptoms you describe.
Hope you're all feeling a little better today xxx
Hey Debelina, I’m so sorry to hear how you’re feeling. I’m with you, my love. 😘
I’ve had a worse time this cycle over the last couple of days with steroids and have come to the conclusion I just have a bad reaction to the steroids themselves, not the withdrawal.
My oncologist suggested tailing them over longer - taking just one a day on days 3456. There is no way I’m taking one this morning (day 6) after how I felt yesterday. Last time I stopped day 4 and wasn’t great, but this is a whole new level of miserable and I’m still taking them.
I need to speak to him again, but if you and I are having a similar response, the longer tailing off has made things worse for me.
Sending you a massive hug Xxx
Try the Pineapple as suggested by Mrs S, also for the pain/sore mouth- if clear ulcer- you could use `bonjela to coat it and also dissolve soluble paracetamol in a bit of water and before drinking it dissolve in the mouth (for local effect), my nurse was suggesting this in the last consultation I had with her.
I hope this helps..
Sending you loads of love and best wishes
My mouth and taste just feels bland and woolly (don't know a better word to describe it). My chemo nurse suggested freezing pineapple cubes in an ice tray with a bit of the juice and sucking on them. He says there is something in the enzymes which helps. I find it quite refreshing x
Ladies......has anybody got the most awful taste in their mouth......it feels like I am tasting hairspray....... I have tried chewing gum, mints, sweeties.....the top of my mouth feels scratchy and the mouthwash Biotiene isn’t helping......any suggestions gratefully received x
Rizzer sending you much love on the steroid withdrawal.......after a really ‘good’ 2nd FEC cycle I thought steriod withdrawal was going to be easier this cycle 😢 I am absolutely floored mentally and physically too......it’s so tough.....I am going to try your way of tailing of the steroids for my next chemo x
cant remember if ive said to you before but i had 12 weekly Paclitaxel, and like you i was terrified and worried about how it would affect me.
we are all different with side effects, compared to some ladies i think i did quite well.
so its kinda ' wait and see '... if i can help with any questions please ask.
i would suggest you keep a daily diary, write down everything, symptoms and what helped you, ur mood etc. and of course drink LOADS..... I Was dehydrated for 2 days and didnt know it and i felt wretched. Ended up having a fluid iv before my chemo.
so good luck. Mini mad xx 💖💖
Thanks Rizzer. We will all get through this. Crazy how the regimes differ but one thing I have learned is that breast cancer is not straightforward.
I'm enjoying having my sister over from Australia. She is being our house elf, we are threatening to confiscate her passport. Have also been binge watching The Stranger on Netflix. Highly recommended!
Yeah that’s totally right. I think it can be wall to wall horrible for some people, so I feel lucky that I have better days to look forward to.
I imagine I’ll feel the same about the paclitaxel when I get to it. The change in cycle length in your case, must also throw everything up in the air, but you’ll do it Fiona ❤️
I’ve got another EC first then only 4 paclitaxel every 2 weeks, so we’ll be rocking on all different levels of craziness by then 😂.
It sounds like our SEs are very similar. I am only on the steroids for 3 days so find they don't affect me too much, except sleep.
I did have a good cry last night. So sick of just feeling crappy and tired, especially after feeling so much better last week before round 3. But I keep telling myself that some of us might not even be getting any good window. Am feeling nervous for the weekly paclitaxel. They keep telling me it's better tolerated but I am scared of the unknown.
Love to all x
Hi MrsS1968, how are you doing now?
I think our SEs have run along very similar lines haven’t they. I do think I feel more tired at this point in the cycle than on the previous 2. But that’s hardly surprising is it. Do you?
Some of it feels psychological... just sort of sick of this and want to have a good cry. But I have to remind myself it’s probably the steroids talking...
Im so sorry you suffer from the injections. I have to say that sounds really nasty. I have been lucky on that front.
I think the fasting now functions as part of a routine that gets me mentally prepared for next cycle as much as anything. God knows, eh?!
Lots of love to you all Xx
I toyed with the idea of fasting but knew I wouldn't be able to fast for that length of time. I also experience the worst nausea on the night of chemo, just mild nausea/ thick tongue/ not knowing what I want to eat for a few days following. I also have managed to avoid infection/ IV antibiotics. I am also quite tired and just feeling generally bleugh. I find the SEs from filgrastim injections pretty horrible- headaches and bone pain. Steroids keep me awake at night but temazepam helps on those nights.
I take my hat off to you managing to fast for that long rizzer. Good luck spinks. Do whatever feels right for you x
Hey Debbie! Lovely to hear from you. I can’t remember when you were due to have the echo done? How are you doing (now jumpy legs under control!) ? Xx