May 2022 chemo starters

[Soggs52]

Hello everyone

Hope my last mammoth post didn't scare you all off! Hope you're all doing ok in the heat.

I've got chemo 4 tomorrow - can't say I'm particularly looking forward to it but here are two good things. One is that it won't be so hot so hopefully the chemo unit will be comfortable and two and more important is that I saw the oncologist yesterday who told me that my MRI scan showed that the chemo has shrunk my tumour to almost nothing. This will likely mean I can have a lumpectomy rather than mastectomy but that's a decision for another time when I see the breast surgeon.

Am sending good vibes to you all xxx

[Soggs52]

Hi everyone

I haven't been around for a while as was a bit floored after my last treatment (round 3 out of 6 TCHP) - it seemed to take it out of me a lot more than the previous round. I'm in week 3 now and feeling a lot more human though I still have days of feeling really tired and my mouth tastes like something's died in it! I got my other half to cut my hair with clippers the other day as it started coming out in clumps so am now a fellow (almost) baldie. It feels a lot better, particularly in the heat. I haven't worn my wig yet - are any of you using one? I just stick on a baseball hat when I go out.

I had another MRI this week and am waiting nervously for the results. I really hope it shows that my tumour has shrunk as it really feels to me like it has.

I was taking HRT before my diagnosis and am really missing the benefits. I'm worried about the long-term effects of having to take tamoxifen or similar anti-estrogen medicine after treatment and I've found Dr Louise Newson's website really helpful. I think we should be given much more information/choice about the benefits and risks of hormone treatments after treatment to make sure we can make an informed decision about taking them.

Welcome @lisa89 - sounds like you've been through it and I hope you get on better with the paclitaxel. Welcome @Lops - hope you're getting on ok with your new chemo treatment.

@Coddfish I hope you got on well with your last EC and you can look forward to your holiday before you switch to paclitaxel.

@RC24 Sorry to hear you've been struggling so much. It's very hard at times isn't it?I hope you've got someone you can talk to. I find it hardest in the week or so after treatment when I feel really nauseous and tired and when the nausea starts to subside then the effect on my throat means I find it hard to swallow so am limited in what I can eat. Good luck with your last EC!

@SULLY98 I have diarrhoea quite often on the TCHP but like you I had a bit of constipation at the start of round 3 only I didn't notice that I hadn't been "regular" until when I finally managed to do a poo I nearly passed out! 🤣 I will make sure to take a laxative next time if I need to. I have to take loperamide every 2 or 3 days at the moment. I don't really have any tips apart from to use nappy rash cream if you get sore and make sure you drink A LOT. I think electrolyte replacement sachets might be helpful but I haven't used any yet.

@Zanna38 Sorry that you feel so sick. I know what you mean about being triggered by the chemo unit. At my last treatment there was a woman trying the cold cap for the first time (I only did it on my first round) and the smell of the conditioner that the nurses use in the unit made me gag. I also feel sick when I have to do the filgrastim injections - just the smell of the alcohol swab is enough to set me off.

@ddlevs How did you get on with your last EC? Did your veins survive? I'm on docetaxel but I can't really advise you how you'll find it as I'm not sure which side effects are from that and which are from the rest of my lovely chemo cocktail!

Sorry if I've missed anyone and lots of love and strength to you all xxx

[lisa89]

Hi everyone,
A bit late to the forum but have only recently found out about this forum & having read back it's something I definitely want to share my experience & support in.

So I'm Lisa, I'm 32 & was diagnosed with breast cancer on 4th April (11 months after having my second daughter). I started chemo on 11th May & the original plan was 4 x EC every 2 weeks then 4 x Paclitaxel every 2 weeks. However after the second EC I had a scan & found that the chemo hadn't been working so we switched to Paclitaxel after the third EC & I will have 5 rounds of this now.

Had a meeting on Monday with my surgeon & it looks like a mastectomy will be happening after chemo as the tumour just isn't shrinking followed by some radiotherapy and possibly more chemo.

I know I'm joining late so how is everyone doing? Daft question I know. I hope everyone is doing ok regardless though & kicking cancers @$$!! It's amazing how strong we can be when it's needed isn't it x

[Coddfish]

Hi @RC24 So sorry it’s been a tough ride for you but once EC#4 is on board you are approaching the chemo half way point, which is definitely something to feel good about. My EC#4 goes in tomorrow and whilst I am on a 3 week rather than 2 week cycle, I know that once I am 10 days or so further on, the side effects from EC are finished. I have booked a week away (within the UK) for the last week of the cycle before I am tied to weekly hospital appointments for Paclitaxel. Hope the treatment causes less constipation for you this time around, I think the effect on the bowels is the worst aspect. Hoping Pax is easier from that perspective. 

[Shi]

Rc24 ❤️ It’s hard to look in the mirror and not recognise who’s image you see, but stand close and look deep in your eyes ❤️ You are still there ❤️ Still the fabulous amazing beautiful  person you always are ❤️👭❤️ Don’t loose sight of you ❤️ Still love, still laugh, still do the things you enjoy and make you happy ❤️ It tries to take your joy, don’t let it ❤️ Please read mountain lion by strawberry blonde in hope and inspiration ❤️ It’s helped so many of us over the years ❤️😘💕💕✨✨Shi xx

[RC24]

Hi ladies, hope you are all well, proud of every single one of you reading your updates these past few weeks, such a mixed bag but a challenging time in so many different ways. You are all amazing & doing so well xx

I've been missing in action as I'm just struggling a lot right now with this process mentally. Friday will see my 4th and last EC but the past month has been hard, my hair has all but gone but I can't bring myself to shave it still. I wear headscarves with the small amount that remains poking out the side to resemble something of 'normal' whatever that is. On top it's totally gone, every day it's a little bit more traumatic when I do the once daily comb and have to gather more up to throw in the bin. My eyebrows and lashes are thinning. I know these aren't the important things but to me they are, I don't recognise me in the mirror anymore.

I'm paranoid at every ache and pain, I'm forever touching my boob! I can tell myself the worst stories sometimes, my brain is a great but dark storyteller... And whilst it's TMI, I've never had constipation like this in my entire life. It's been so bad my ribs are too tender to even touch. Currently on 4 laxatives a day which is so excessive!

On the plus side i've not struggled too much with sickness, feel super grateful I have my appetite and energy is still doing ok. 

I just think right now I have too much time to think, and social media can be terrible!

Anyhoo, just brain dumping, thanks for reading if you made it this far. Your posts these past few weeks have been one of the few things that have been a positive - @Shi I've also made a note of all your recommendations!

Lots of love to you beautiful ladies xx

[SULLY98]

Hi girls, hope you’re all well and enjoying the fab weather.. I’m looking for a bit of advice and I suppose a rant. I had my 3rd TCH last Monday And suffered brutal constipation until Friday (different from previous 2 cycles when It was the other way) since Friday it’s been going the other way, horrible cramps, stomach gurgling, wind and then last night exploding bum (sorry tmi). Just feeling miserable and to top it off I have piles which are so painful. I’m taking immodium, just wondering if anyone has any tips. I know I’m lucky in the fact that this is the only symptom I seem to suffer with compared to others but I’m just exhausted from it….Also can I ask about hair loss, I shaved mine to a no3 when It started to fall, it seems to have stopped falling out now and is this weird spikey random fuzz, is this normal or will it go completely in the next 3 cycles? Thanks for reading the random rant x

[Shi]

Redbean 👭👭👭 once treatments finished get some sunny isle extra dark Jamaican black castor oil and rub it onto your head and leave for about hour then wash as usual yes do this to bold head and keep doing it, it helped my hair grow back after finish treatments when it wasn’t growing back ❤️ A tip given to me by a guy who had a bald patch and proudly showed me his no longer bald patch and said this is what you need 👍 like an Angel his was plonked in the wig shop just at the right time 🙏 to pass on that tip ❤️ Glad you have great weather ❤️ We too will be enjoying a week of lovely weather too 🌞🌞🌞 but we don’t have air con 🤣🤣 lucky if we get above 24 usually 🤣🤣 good old Blighty ❤️💕💕✨✨Shi xx

[redbean]

@Loubie25 I feel you about the hair loss. As if we don’t have to go through enough…almost all of mine is gone, just a fuzzy baby chick head (so not even sexy and totally bald)...I just finished by 3rd (of 4) rounds of TC and hoping to wrap on July 26. 6 weeks radiation starts August 22 if I stay on track and avoid Covid and every other thing under the sun. I’m grateful for the beautiful weather we are having in the Midwest (I’m in the states), but feeling lonely and isolated that I cannot go to street festivals and parties and the like. Trying to remember this WILL be done soon and I’m lucky that I’m halfway through. But the darn hair loss lasts…Hair doesn’t grow that quickly!….I’m not a short hair person and although I have a wig, it just feels I won’t be able to get away from the “cancer feeling” as long as my appearance isn’t what it “should” be, you know?

thank you for all your posts and sharing. It makes me feel so much less alone.

xoxo,

redbean

[Shi]

❤️ I hope you have better success today. My veins collapsed too during chemo and my arm looked like a shark had attacked it by the end of chemo. I used to sit at home with a sheet heat pack on the arm and rubbed ibuprofen gel on it too between chemos, do check with your unit tho before using ibuprofen. Just passing on tips that  worked for me in case they might help a bit 💕💕✨✨Shi xx

[ddlevs]

@Shi yes they put a heat pack on my hand but it didn't help last two times. Just hope they can get the cannula in today and if doesn't make my painful arm a lot worse. Xx

[Coddfish]

@ddlevs @Loubie25 sorry to hear you are both having trouble with this. It does surprise me how hospital trusts differ - mine won’t put epirubicin through a cannula, they absolutely insist you have a line or port. Given your experiences that sounds a fairly sensible policy. Hope you both recover and have less trouble with your veins on the taxane. 

[Shi]

Loubie25 ❤️ When treatments done, sunny isle extra dark Jamaican black castor oil rub it on head and leave for bout an hour tgen wash off with lush shampoo bar called nu looked like a red dot if they still do it 👍 this worked for a lot of us when hair was bit slow growing back ❤️ 💕💕✨✨Shi xx

[Shi]

Ddlevs ❤️ Ask if they can put your arm in sharps bucket of warm water prior to infusion and ask for a heat pad for your arm too 🤞 this helps it was a trick my chemo team used for knackered veins 👍 worked well 🤞❤️💕💕✨✨Shi xx

[Loubie25]

@ddlevs sorry you are having problems with your veins. I finished FEC (the same as EC but with the extra drug) last week. I'm moving on to docetaxol in 2 weeks too. My arm has been hurting aswell, it isn't as bad this morning so hopefully it will pass. I know the Docetaxol isn't as bad on the veins.

I've lost a lot of hair and feel so sick all the time, actually don't feel I can do another chemo. Fed up of reading about cancer and hair lol. Actually shed a tear this morning when I saw someone with lovely long hair 😢 I miss my hair. I just keep thinking it will be over end of next month and I can hide away over the winter with hats and wigs and then hopefully spring will be better. Will also be better once I have mammogram and they say everything is gone. 

I spoke to 2 lovely ladies at my Maggies centre who had both been through the same regimen. One lady had awful side effects with docetaxol and the other said she breezed through it and felt much better than the fec. No broken nails, fatigue, sickness, or mouth ulcers.  Fingers crossed we will be lucky. Keep your chin up, I know it's hard. Lots of love fellow warrior! 

[ddlevs]

Hi all. Got my 3rd EC tomorrow before starting on DOC for 3 treatments. Last EC has left my arm really painful and tight, like massive bruising inside. I want a picc line but chemo nurses were saying they would manage though it took loads attempts to get a cannula in last time. I made a complaint and am now on a waiting list for one but got to have cannula again tomorrow which I'm dreading. My veins are no good and my arm is so painful I ended up at hospital last week as inflamed and veins hardened now. Really scared of permanent damage after another EC goes through tomorrow. Then I'm dreading DOC as I've read of terrible side effects. Keep telling myself one day at a time. My hair has completely gone now and one eyebrow has shed, the other is like a wonky Caterpillar with bits missing 🤣🤣. 

[essjay19]

Hi @Lops - welcome to the club none of us signed up for! This group defo helps with the journey. I'm HER2+, but on almost exactly he same schedule as you. Start my weekly Paclitaxel on 12th July for 12 weeks. Just finished 4 rounds of EC every two weeks: a great relief, although it wasn't too unkind to me. Op (most likely mastectomy) in late Oct-ish. And radio after that - hadn't quite got round to asking when, so thank you: your timings a good pointer. And then an excitement of follow on drugs from there (Herceptin and Tamoxifen, I believe). I'm also 'lymph involved' as they say.

Today I had my 4th covid jab so waiting to see what happens later today. Couldn't even feel the needle compared to the chemo needles! Felt like a relief - it's all over the place again in S. London. 

Onwards and upwards. 

Hope everyone is doing ok. Sending you all strength. 

[Lops]

Hiya everyone. I started 14th May, fortnightly EC for 4 cycles with I’ve just finished last Saturday. 
due to start weekly pax/carbo on the 11th July for 12 weeks with carbo added every 3rd week. I’m really nervous about the new lot of chemo-I was one of the lucky ones and didn’t suffer too badly on EC, I was cooking the Sunday roast the day after! Had general tiredness the day after the steroids ran out, a few mouth ulcers too. 
didn’t like the 7 days of filgrastim injections-the bone pain from them was horrible!
A bit about me anyway-diagnosed with stage 3 triple negative in April. Lymph nodes affected but no spread anywhere else-and my oncologist told me they are treating me to cure me. No ifs no buts-those exact words. Will be having a mastectomy end October/November then radiotherapy in January. If there is still evidence of active cancer in the cells after the op I will be on cape for a further 3 months or so.

Anyway-stay strong ladies. We can do this! Xxxxx

[Zanna38]

Hi everyone

@SULLY98 welcome to the club - it's great to have you on board.

@crazycat I'm so sorry you're having such a rough time. We're all here for you and and I'm sending you lots of virtual love. I guess we all know how horrible it is waiting for these results and I hope you're managing to stay calm and positive. Please do keep sharing your news-  we're a team now and we want to help get you through this.

@Soggs52 Happy birthday! I hope you manage a lovely piece of cake. And congrats on making it to the half way point - I'm glad this one was a little better for you. I've been on aprepitant for 3 days after each of my treatments and it seems to work well. 

I'm on day 4 post EC4 (my last EC - hurray!). Feeling fine for now but after cycle 3 I don't hold out much hope that it's going to stay that way. I found the actual chemo much harder this time as the smell of the chemo ward triggered me and I felt sick as soon as I walked in. I hope that doesn't happen next time, as I move on to 4x fortnightly paclitaxels, which are 3 hour infusions + cold cap. So I really don't want to be feeling sick for the full 5 hours I'm there for.

Love to all of you xx

[SULLY98]

Thanks so much for the welcome ladies, I’m glad I’ve found you. Not very up with using forums so bear with me! @Soggs52 nice  to have  someone on the same regime. I live in Ireland so my treatment is TCH no P, not sure why? Doesn’t seem to be part of the regime here. I have it all though the Cannula and once chemo is finished I will continue the Herceptin through injection for the year. My worst symptom is diarrhoea, which has gone  on for over a week the last two cycles. I was more tired on the last one, but they told me fatigue gets worse with each one. Cant wait to hit the half way mark and be on the home run… my consultant is very confident I will be fine after this, he said that triple + is the best of a bad situation as it is so receptive to treatment.. I hope he’s telling the truth! Happy Birthday for tomorrow and enjoy the cake x 

[Soggs52]

Hi everyone - just been catching up on all your messages. So nice to hear how everyone is doing.

@crazycat I'm glad you're back home gathering strength after your chemo ordeal but I'm so sorry you've had such a hard time. Of course we want to hear from you - we're all in this together and none of us know what we're going to face at any point. It must be so frustrating for you when you just want to get on with your treatment. I'm really sorry to hear about your bone scan results and have everything crossed that your next scan and meeting with the oncologist goes well. Please keep us posted. Sending you lots of love xxx

@essjay19 Great news that you've had your last EC treatment - must feel great to have that ticked off. Hope you manage ok after the impending steroid crash! Am I right in thinking that weekly paclitaxel is easier to cope with? I hope so.

@Zanna38 Thank you for thinking of me! I did feel much better in week 3 and was glad when my appetite perked up and I could even manage the odd glass of wine. 

@Coddfish Poor you with the constipation/diarrhoea dance! It's diarrhoea for me all the way. Top tip - if you get at all sore then I find nappy rash cream really helpful. I use the yellow one (can't remember the name at the moment). Have taken note of your nail recommendations and have finally ordered some Polybalm - hope it's not too late to start using it! my fingernails look ok but one of my toenails looks ominously like it's changing shape! 🤔

@SULLY98 Welcome - lovely to have you join us! You have the same diagnosis as me and are on the same/similar treatment regimen - think we're a small minority. Are you having P as well as TCH? I have H and P given together in an injection called Phesgo - only takes about 5 minutes instead of the 2 hours that would be needed to give them by infusion so that's brilliant. Looks like I'm a week ahead of you in chemo. I still need surgery but don't know yet if I'll need radiotherapy too. Still unsure whether I'm going to have a lumpectomy or mastectomy but I have another MRI in a couple of weeks so will have more idea when I speak to the surgeons again after that. How are you coping with treatment so far? The worst side effects for me have been nausea and sore mouth/throat (also diarrhoea and fatigue but those are somehow more manageable). 

I had round 3 of 6 TCHP treatments yesterday. Feels good to be half way through now. It was better than last time when I had a funny reaction to the docetaxel so they gave me some antihistamine beforehand and it all went smoothly. I was a bit worried as the seat I was in didn't have a buzzer to call for help so everyone in my bay was primed to shout "nurse" if I had any problems!!! 

I struggled with the nausea last time around so they've added 3 days of aprepitant (another antinausea med) this time and I'm hoping that'll get me through the worst of it. Though my worst day last time was day 4 so hope it doesn't hit me on Saturday!

It's my birthday tomorrow so hoping I'll be ok for a piece of cake but did most of my celebrating last weekend when I was feeling up to it!

Everyone else - sorry if I've missed anyone out - hope you're all doing ok. xxx

[essjay19]

Hello @SULLY98 & a big welcome to the club (that none of us wanted to be a member of). What a rubbish 50th for you. Good luck with your next round.

@crazycat - thinking of you, big style. The uncertainty is so hard to process and deal with. Sending you strength, and hugs. Of course fine to post on here: we will all have tough bits on our respective journeys.

I had my 4th and final cycle of EC on Monday. Waiting for post steroid crash tomorrow. But feels good to be done with one of my treatments, if not out the other side. Still plenty more to go: 12 weekly paclitaxel followed by an op + + +

[Coddfish]

Hi @crazycat  The NHS do contribute £75 to a wig but I don’t think there is a standard process as each hospital trust handles it it’s own way. At my hospital there’s a wig provider based within the onsite MacMillan centre, you are referred into them by onco, and would then would only pay the top up if needed. I think the voucher in effect covers wigs at a higher price as wigs for chemo are VAT exempt and the list price will include VAT. I just had to sign a form to state I was eligible for the VAT exemption. I know of another hospital that provides a voucher which is only usable in specified shops. 
I hope the bone scan doesn’t throw up problems and that you can soon continue treatment. 

[crazycat]

Hi everyone, 

sounds like you are all moving on with your cycles I should be starting cycle three next Friday but everything is paused till I’m strong enough to face cycle two. So hard when all you want to do is tick off the treatments. Came home from hospital last Tuesday and slowly building up strength. Hoping to have some answers next week as sadly a ct scan while in hospital showed a suspicious area in my spine at T8 ( bra strap area). Having full bone scan tomorrow and hopefully meeting oncologist for results next week. All a bit of a shock at moment and can’t process it all. Lung also has suspicious areas but they are confident these are infection so will be re X-rayed in two months. 
wasn’t sure whether to post that here as you are all battling  a journey and need to stay positive think I’m just unlucky. Hopefully is just that one area and we have picked it up early. Will keep you all posted. 
please keep posting your updates they really do help. 
also looking for peoples experiences of wig fitting. Went today and was fab experience other than payment? Need to sort with hospital apparently to pay prescription charge of 75 then rest of wig price is covered. However a friend who went through this last year and her wig was completely free? What have your experiences been. I don’t think 75 for wig is bad but equally odd that everyone maybe treated differently? 
thanks I’m advance x 

[Zanna38]

Hi @Soggs52 I hope you’re feeling a little better now. Cycle 3 was indeed worse for me. I was pretty bad from day 5-7 but I did recover and had a few days of feeling ok before cycle 4 (which was yesterday). Good luck to you x

[Shi]

Codfish ❤️ Laxative s and Imodium become great friends as you dance the chemo dance ❤️ Keep focused ❤️💕💕✨✨Shi xx

[Coddfish]

Reading back I see @Zanna38 ’s 3rd EC was tougher than the first two. That’s seems to be my experience too. Lots of constipation, which hadn’t been too bad on previous cycles. Hit the laxatives and of course made it go the other way. Hey ho, it’s a case of one day at a time. Glad I only have one more EC to go after this. 

[Shi]

Sully98 ❤️ Sorry you find yourself on here but bcn 👭 is here for you and everyone on here is too ❤️ Ask away and do look at everything bcn can help with ❤️ You made me 🤣🤣 with your and for dessert comment 🤣🤣 humour will help get you through, it did our oct17 chemo gang 🤣🤣 we were the crazy gang for sure and if anyone ever needs a 🤣🤣 do head there because we were 🤪🤪 and you know what it helped us all get through ❤️ 💕💕✨✨Shi xx

[SULLY98]

Hi, I’ve just come across this site and so glad I did. I started chemo on 23rd May TCH, I have had 2 cycles so far, next is 4th July. I am having 6 cycles in total every 3 weeks. I was diagnosed on 3rd March, 11 days before I turned 50.. I could think of better presents! Anyway I have er+ Pr+ and Her2+, had lumpectomy on 5th April, currently having chemo, to be followed by a margin surgery and for dessert 4 weeks of radiotherapy. Still can’t get my head around the whole thing, breast cancer happens to other people right?  So good to read the positivity on this thread, hope you don’t mind me joining, 😊

[Coddfish]

@woodfire27  I was told there wouldn’t be bone marrow stimulating injections with weekly Paclitaxel. Don’t know about the dose dense version as I think that means getting a whole cycle dose every 2 weeks (so 3 times as much as the weekly, where a dose is classed as 3 infusions). 

[woodfire27]

Hey @Zanna38  original plan was 12 weekly Paclitaxel with carboplatin every three weeks, but now I don’t know - if I get recommended the dose-dense fortnightly paclitaxel I think I’ll go with that (speaking to onco on Monday),  just so I have the week off in-between to recover and no hospital visits.   It does sound like weekly paclitaxel is easier to tolerate though.  What are you changing to???  Do we still have to do the filgrastim injections with next regime???  

@redbean I’ve also shaved my hair off - the mad professor/monk wasn’t a good look,  it feels so much better now in fairness….before I had a constant pull like it was up in a tight ponytail and felt really itchy,  I’ve been massaging my scalp with balm - to keep follicles stimulated (this morning my daughter started massaging my head lol) I don’t have any ingrown hairs/sore patches…maybe try some aloe/tea tree shampoo. 

@Coddfish  glad to hear all is well with you.   I don’t like the sound of ingrown nails, or them going black/falling off….not really a summer sandal look and must be terribly painful!!!!! Definitely be using my polybalm everyday from now on. 

Hope you all have a relaxing weekend and have chance to unwind - take it easy xxx 

[Coddfish]

@crazycat  Angela, so sorry to hear of your troubles, I really hope they can get you well and manage the following sounds rather better for you,

My 3rd load of EC went in on Wednesday and I am pleased to be getting through this without too much trouble. My red blood cells took a bit more of a hit on cycle 2 so it’s been harder to run, especially with the hotter weather. I also struggled a bit more with abdominal wind and pain in the last week of the cycle as my gut biome tried to fight back, I have been given some IBS medicine for this cycle. 

Re the various comments about nails and Paclitaxel - a friend of mine had 3 weekly Doxetaxel a couple of years ago and lost some toe nails. She is still struggling with them as they are constantly ingrowing. So I have been resolutely Polybalming all my nails since a couple of weeks before treatment and will continue for a couple of months afterwards. So far so good. I am also using cold booties during the infusions. 

[redbean]

Anyone else having trouble after getting a buzz cut? I had it buzzed nearly two weeks ago (hair started falling out in earnest about 14 days after first TC infusion). Wish I had taken pics then because it looked cute compared to what it looks like now. Patchy and very thin and fuzzy. But itchy! I wash the little that’s left every day or every other day, but it is still super uncomfortable. At least it isn’t as tender as it was…any advice? Thanks!

[Zanna38]

@woodfire27 it's made me very happy to hear that your 4th round is less bad than your 3rd. I'll be keeping everything crossed that it stays that way for you and that I have the same experience! I've just asked my mum to come stay next weekend to help with my toddler incase I have another bad reaction. She drives me mad at the best of times so this is real desperation!!

I've been polybalming my finger nails every day - need to step up and start the toes soon too. Planning to do more research on paclitaxel this weekend so I'll share anything I find. Are you switching to weekly or fortnightly?

[woodfire27]

Hey everyone- hope all keeping well and in high spirits following brief spell of sunshine.  Similar to Zanna38 the third cycle of EC floored me…..total wipe out!!!!!   But I’ve now had my fourth and final EC last Saturday and have felt really well following it….I think it’s because I’m excited I feel half way through now,  I’m also switching to paciltaxel.  More good news was i had my genetic test results today and don’t have BRCA gene so won’t be having carboplatin added to next regime and won’t need further surgery.   
So now I need to step up polybalm game and look after nails and think about my hair eventually growing back.  Has anyone got any recommendations for needing anything before switching regime??? Maybe cooling gloves/boots,  hair/eyelash balm - I feel the need to treat myself.   I bought some amazing self heating eye masks for when my eyes have been tired https://spacemasks.com/  - 100% recommend

i enjoyed the Look Good Feel Better workshop I did on nails,  will probably do the makeup one soon if anyone fancies joining the same one??? 

Wishing you all well xxxx 

[Zanna38]

Hi everyone

Just checking in to see how everyone is doing. I hope you've managed to enjoy a bit of sunshine this week and getting through this, day by day. Angela, I hope your recovery is continuing and that you're starting to feel better. 

I'm gearing up for my 4th and final EC next Tuesday, before I switch to paclitaxel. This cycle has hit me a LOT harder. I was floored from Saturday - Monday with nausea and had to outsource toddler care by whatsapp from bed. I am feeling much better now and looking forward to the end of the Red Devil. I did the virtual Look Good Feel Better workshop last week and it was wonderful to "see" @essjay19 there (she is totally rocking the scarf look). I still have most of my hair but a few strands come out now each time I run my hands through it so I'm not sure if its demise is now imminent. 

Sending lots of love and good vibes to you all. 

xx

[essjay19]

@crazycat Angela: I'm so sorry. That is ROUGH. As though you weren't going through enough already. Sending you lots of strength and sisterhood-ness through the ether. And if we could come and give you a huge hug in real life, we would. Fingers crossed you keep heading in the right direction. One day at a time. 

@Soggs52 - ouch to the foot! What really bad luck. You can't make it up. So sorry to you too. I'm with you on the sore throat. I had a kind of burning in the back of my throat. Felt like someone had left a cheese grater in there every time I swallowed. 

Sending strength to the rest of the crew, hope you are all doing ok. 

[Shi]

❤️Angela each round of chemo can be different ❤️ I was hospitalised for 6 days after my first chemo and wanted to run for the hills but 👭 onc reduced dose and was ok ❤️ sending ❤️💕💕✨✨Shi xx

[Soggs52]

I've found my second round of treatment harder going - though nothing compared to poor Angela - the nausea lasted longer this time around and then for the last week I've found it hard to swallow anything too solid because of a combination of sore mouth/throat and indigestion, so it has been hard knowing what to eat or even to summon up the enthusiasm to eat. I've been feeling much better the last day or so which is a relief and feel like I've got my appetite back. But... I've managed to fracture my foot today. 😫 I was out walking my dog and she was playing with another dog which ran into me - I wasn't looking so didn't have time to prepare myself and my ankle gave way and I ended up on the ground. Was rather embarrassing.

Anyway, I've got to be fitted with a walking boot and am waiting to hear from the fracture clinic to see if they need to do anything to treat it. I don't know if this will delay my next round of chemo which is scheduled for next Wednesday.

Hope everyone else is doing ok xxx

[Soggs52]

@crazycat Oh no, Angela, that sounds awful. You poor thing. I really hope you are ok to go home soon and they can sort out your treatment plan going forward so it's manageable for you. Sending lots of love to you xxx

[Zanna38]

Oh my goodness Angela. I’m so sorry to hear what a terrible time you’ve had. It sounds awful - nobody should have to go through that. I’m glad you feel you’re turning a corner now and I hope you can get home soon. Chemo is such an ordeal. I hope the recovery continues for you and  we’re all here for you. Sending love and all my best wishes for your ongoing recovery x

[woodfire27]

Oh my goodness I’m so sorry to read your recent experience,  sounds like you’ve really been through it & had a scary time,  but so glad you are being well cared for and feeling like you’ve turned the corner.  I’ve shaved my head now too - so we’re in the same boat with our hair lol.  Wishing you all the best and hope you are allowed home soon -  We are all here for you xxx 

[crazycat]

Good morning, 

finally feel able to do an update it’s been a rough rough three weeks chemo does not agree with me at all. So after spending first 4 days of chemo in hospital vomiting I managed 5 days at home feeling rubbish for most of it. 
then I collapsed early hours of Sunday morning two weeks ago woke up 6 hours later still on floor. Managed to climb into bed and call for help. Temp 41.8 blood pressure in my boots. Ambulance called by friends and rushed in to Ed. They did everything the policy said for neutropenic sepsis and started ivs antibiotics straight away. 
hickman line infected so removed and here I am 15 days later still in hospital needing oxygen and still on iv antibiotics. White cell counts and all bloods returning to normal thankfully and starting to feel like I’ve turned a corner. 
ao wonderful to read your messages and see you are all doing so well gives me hope for next round whenever that will be. At moment they are postponing for at least two weeks. 
the team think I’ve just been really really unlucky but we need to make a robust plan going forward. 
Can’t believe I should have had my second dose last Friday seems surreal. Hair-loss happened while in here and I’m thankful as don’t know how I would have dealt with the mess at home. The nurses shaved my hair last weekend as was so painful. No tears about hair-loss yet but had other stuff to deal with. 
sorry for long  post but wanted to let you all know I’m still here and am enjoying your updates. Love that some are working, some doing runs still and some managing to get away for a break. Just shows how different are journeys are and how amazingly strong we all are. 
stay strong 

love Angela 

[Coddfish]

Good to hear we are generally mostly ok at the moment. I am in the third week of my second cycle of EC, and we took the decision to go away for a few days, staying out in the countryside north of Hereford. In beautiful weather, it feels rather idyllic, even if I can’t do as much with my days as I usually would. I have found it a bit harder to bounce back to full fitness on this cycle. I went for a run yesterday, and fared somewhat worse than at the same point last cycle. It all seems to be about how easily my heart rate rises, and the extra time it takes to return to normal. I really hope these effects aren’t permanent. I’d got back to a reasonable 5k time on my final parkrun of the last cycle. This time I will be slogging myself round a new (to me) course (Hereford), so it will be difficult to make comparisons. Something else to discuss in my review on Monday. 

[Zanna38]

@Loubie25 I'm sorry you've found the hairloss so distressing. I get it - it's the most visible sign of cancer and I don't think I'm going to like the way I look AT ALL when it happens for me. I don't know if this helps or hurts, but I've honestly been quite worried that the chemo isn't working for me as my hair loss has been slow - I've done three rounds of EC now (#3 was only two days ago) and I haven't lost a lot, but it seems to be coming out faster now. From what my chemo nurses have told me it's EC that needs the most cold capping time, so do be firm if you feel they are. 

@ddlevs I hope the bloods go well today and EC3 is smooth for you. I'm really impressed you bit the bullet and shaved your head and I'm delighted for you that you feel good. I'm assuming mine is inevitable and ngl I'm looking forward to wearing the pink wig I've bought - think Julia Roberts in the first scenes of Pretty Woman hahaha. 

@essjay19 happy we might be at the same workshop tomorrow! I'm doing the 10am one. I'm looking forward to it. I've also booked a nails one for a couple of weeks time as I heard the paclitaxol is rough on nails - I start pac in 4 weeks time, after my final EC. Re persevering with the cold cap if the hair is gone: my oncologist said that they generally don't let you, as the freeze can be bad for the scalp. But I'm also eager to keep going if I can because of faster regrowth so I was going to look into buying a thin skull cap which I could wear under it.  Thanks for the future dreams rec- I'll definitely check them out.

My 3rd EC went ahead on Tuesday. It was almost cancelled because my WBCs and neutrophils were too low (after them going sky high last weekend, and then being told to stop the filgastrim injections after my first one). But they told me to take a filgastrim on Monday afternoon and so chemo went ahead as planned, thank goodness. I'm now on 2 rather than 5 injections, starting on day 6. I've still got most of my hair but it's falling out faster now. Though my chemo nurse reckoned if I got through 4x EC without losing it all I may be able to survive the pac with a light head of hair. Otherwise, the side effects have been ok so far and I'm feeling reasonably positive with 3/8 done. In less good news: my toddler's nursery has had a case of hand foot and mouth and so my oncologist requested I withdraw him for two weeks, or longer until the outbreak has passed. Not looking forward to trying work/survive chemo/look after a three year old. 

Sending love and good vibes to you all xx

[essjay19]

Hello fabulous ladies

I hope you are all doing ok as you navigate your way through.

I had my 3rd EC on Monday, today is steroid come down. So far so good, but there's plenty of day left given it's 11am... I've lost about 50% of my hair, so rocking some Zara scarves (firmly fixed in place with clips) with the remainder of my hair poking out at jaunty angles. I can just about get away with looking like I'm channelling my inner hippy. Like others I've been doing the cold cap for 30 mins before, 1.5 hrs after for EC, but think I read on the Paxman site that its 60mins after for Paclitaxel. I do find myself wondering if it's worth it - with 13 rounds to go and only 50% of hair (so taking it every day as it comes). I saw some research (albeit from Paxman, so in their interests to promote it!) that persevering with the cold cap can encourage growth afterwards. But everyone's hair grows back afterwards anyway....? Who knows. 

I've also found a bit of dark humour helpful on the hair front: I have a running game with the kids of 'where's the wierdest place you've found one of my hairs?'. And yes @redbean I like tossing them out of the car window too. Fed up of little haircakes littering the bins around the house...

I've found this brilliant charity (great for everyone, but especially the London folk) Future Dreams specifically for women with breast cancer. They run masses of events, lots f2f but also some remotely. I've been to 3 remote sessions: Headwrappers (how to tie scarves) last week, a life coaching session (how to think about and manage your energy), and have remote Look Good Feel Better online tomorrow - maybe see you there @Zanna38

To the London folk, I'm at Guys & Blackheath, maybe see you at Guys @Racheiz - I'm using Vitality insurance. Like you, conscious that I may be getting easier/smoother access on some aspects but all the docs exactly the same, and the drugs are the same. 

@RC24 - that's just rubbish. What insanely bad luck. I hope you are on the mend. 

Sending strength and good vibes to everyone. 

[Loubie25]

Thanks @Zanna38 I've emailed my specialist nurse to ask them. They actually switched it off 10 mins earlier last time as my chemo nurse said that the last drug didn't affect the hair much. I am really regretting letting them do that, but you think they know more than us. I'm so distraught over the hair loss, I expected to lose some but if I could have kept more if I'd cooled for longer, it will be a hard one to take.

Hope your chemo is going OK x

[Loubie25]

@PJMc Is that 90 mins after all drugs are finished? I'm on FEC which is the same but obviously an extra one. I am so upset as I have emailed Paxman to ask them and they said that based on research and my drug regime, I should be having a 90 min post cool and to mention it to them.

I get that here in the UK we don't have to pay for our care but to think that I could have kept a lot more hair if they had stuck with the recommended time. They even switched it off 10 mins earlier last time as the chemo nurse said the last drug didn't harm the hair as much. I just don't know what to do. I have one FEC left.

[PJMc]

What chemo are you on? The length of time before and after treatment is drug specific. I'm on EC just now and it's half hour before and 90 minutes after. Moving onto Paxitatel which I think is just 60 minutes after x

[ddlevs]

Hi @Zanna38  I hope your ec went smoothly yesterday,  i have my 2nd ec on Friday, bloods this morning. I had all my hair shaved off at the weekend it was coming out terribly and I feel so much better now. I am now rocking the bandana look as wig is too hot and irritating. I did the look good feel better make up and skin care course virtually and it was fab. Yes you get a goodie bag sent which I got about 10 days later. The products in it are amazing, cleansers, moisturizer, lipsticks,  eyeshadow palette, foundation and loads more. I'm booked in for the hair one in a couple of weeks.  After my 3 ec I have 3 doc and don't know what to expect from doc 😬. My face has gone really dry at mo and I'm peeling a bit also have had some cracking headaches. Weather is lovely and typical Friday is a scorcher and I'm at hospital, then we have rain forecast for the weekend ! Hope everyone else is doing ok, @RC24 hope you are recovering well.