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May 2022 chemo starters

221 REPLIES 221
Zanna38
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Community Champion
Community Champion

Re: May 2022 chemo starters

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

Coddfish
Member

Re: May 2022 chemo starters

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
Community Champion
Community Champion

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Community Champion
Community Champion

Re: May 2022 chemo starters

❤️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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

@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
Member

Re: May 2022 chemo starters

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
Member

Re: May 2022 chemo starters

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. 

Zanna38
Member

Re: May 2022 chemo starters

Hi @Loubie25 - I do 30 minutes before and 90 minutes after. I'm doing EC and the 90 minutes start after the "E" (red one) is injected. I think it's different for different drugs, and I've been told I'll need less time after once I move to paclitaxol. 

Loubie25
Member

Re: May 2022 chemo starters

Thanks @Zanna38 I'm feeling much better thanks.

 

Have had another inch or so cut off my hair so it doesn't look as messy.

For those cold capping - how long is your time after treatment? Mine is only 45 mins. I wondering if this is too short as Paxman recommend 90 mins, so don't know why my centre only recommend 45 mins. It's worrying me a bit as I've done 2 infusions already and have lost about 60% - could I have saved more if they had done longer?

Zanna38
Member

Re: May 2022 chemo starters

Hi everyone

I hope you're all doing ok this week and managing to enjoy the sunshine despite chemotherapy.

@RC24 I'm so sorry to read about the rough time you've had. What a moment for the appendix to cause you trouble. I hope you're recovering well. @Loubie25 I hope you're feeling a bit better about things today. This journey really sucks and I think we all deserve time to wallow and just feel sad. I thought @redbean gave great advice ❤️@Soggs52 I hope you're doing well a few days later and that you managed to get some sleep. I love St Georges and I'm glad you had a good experience there too. 

I have EC#3 today. My second cycle was more or less ok. The side effects were manageable and better than round 1, although I was very teary on days 8/9. After the drama last weekend, when I went to A&E and it turned out my WBCs were sky high, I had my pre-chemo blood tests done yesterday and they and neutrophils are now rockbottom. I got a call from the chemo nurse to urgently take a filgastrim injection so I rushed home from work to do that. Chemo was supposed to be at 9.30 am today but it's been delayed to the afternoon to give the WBCs a chance to replenish. I'm relieved it hasn't been cancelled.

My hair is still here but each time I run my hands through it a few strands come out. So I suspect that it'll start falling out in larger clumps too. In some ways I feel it's inevitable and just want it to be done. But I'm also holding out a bit of hope that the cold cap works for me. 

Anyway, after today I only have one more EC left.  Oh, and I'm doing the look good feel better workshop this Friday. Anyone know if you get the goody bag if you're doing it virtually?? I've also booked in for a nail one and will sign up for a hair one. 

I hope the sunshine brings brightness and happiness to you all this week 

redbean
Member

Re: May 2022 chemo starters

@Loubie25 
sending you love and encouragement! Just buzzed my head yesterday after a week of long strands of hair everywhere. I worked from home Friday just because I couldn’t take going to work another day and needing to find a wastebasket every time I had a clump of hair to toss! (FYI much easier in the car—just opened the window!)

We can say up and down that we are beautiful inside and out (which IS true and YOU ARE!), but I felt like every time I lost more hair, some of that beauty was taken away and I couldn’t reclaim it in any way. Does that make sense? And then losing it all yesterday….got a kick ass wig but still isn’t my hair. Feels like I’m borrowing someone’s head! 

Best advice that other BC survivors have given me is to take it one day at a time. I struggle with that as a rule, but there are some days it feels freeing to embrace that mindset. Even if it’s just to get through the darn day! 

Back to the hair loss: Amazon has gorgeous scarves at super inexpensive prices. I bought a couple to match fave dresses and that was a good cheer up. Also eyeing some Liberty of London scarves on eBay….jealous if y’all are able to find them at your thrift shops! (Remember I’m in the States)

Wishing you all love and strength and resilience. 

XOXO,

redbean

Loubie25
Member

Re: May 2022 chemo starters

Hi All

@RC24 hope you recover ok and can have your chemo.

@Soggs52 I know what you mean about the steroid comedown. I haven't stopped crying today. I look awful and feel awful. Really struggling with it all today, seeing my hair falling out day after day and not being able to have any control over anything.  I really need to lose some weight and am kicking myself for not carrying on with my weight loss end of last year. Hindsight is a great thing eh! I know it will all pass and there will be a day again that I feel on top of the world. Just have to keep fighting. 

Stay strong lovely ladies x x

Soggs52
Member

Re: May 2022 chemo starters

@RC24 Poor you - that's the last thing you need right now. Good news that the appendix is sorted but as you say what terrible timing. Just try and rest so you can recover as well as possible and don't worry about your next chemo - it'll come round in its own good time. And sorry to hear about the hair. It's a cruel treatment.

@Coddfish It's nice to know there's someone else nearby and am hoping we get to meet up at the hospital at some point. Or maybe even at the seaside!

@Racheiz Hope you're still doing ok after your EC treatment. My steroids only last for 3 days each cycle so it must be different with the treatment I'm on. I do find that on days 3/4 when I've finished them my mood definitely dips and I've been a bit tearful the last couple of days.

The nausea has been much harder to cope with this time around and I've needed to use my 'extra' antinausea treatments quite regularly. I'm hoping it's on the way out now as am beginning to feel a bit better. I know they said the treatments can be cumulative but I hadn't really anticipated what that meant! I hope they can adjust my meds a bit next time around so it's not such a struggle.

Hope everyone else is doing ok. Much love to you all xxx

RC24
Member

Re: May 2022 chemo starters

Hi all my lovely May lot

Hope you’re all doing well, I’ve just caught up on everything. Sending love and hugs to all who need them right now.

I’ve been missing in action due to my appendix deciding it needed to come out the same week I was due my second EC. To say I’m struggling with the timing of everything is an understatement.

I came out of hospital Thurs evening and chemo has been delayed a week till Friday. I’m very sore and have been given pain relief. I’m finding it hard to process it all and on top of everything I washed my hair yesterday for the first time in over a week and the hair shedding has started. It all feels too much for me to comprehend right now. 

I have to hope this is all going to come good eventually. Right now I’m feeling so overwhelmed. How is everyone else managing with accepting this journey? Xxx

Coddfish
Member

Re: May 2022 chemo starters

Hi @Soggs52   Small world, I am being treated at QAH too. I live in Southsea. The hospital is I think overstretched like everywhere but they do seem good. 

Racheiz
Member

Re: May 2022 chemo starters

Good to read how everyone is getting on, sorry to hear about some of the challenges, feels like it's never a smooth road!

absolutely recommend the Look Good Feel Better workshops, as someone else said the makeup one is well worth it for the incredible goody bag! The haircare one was good too I thought.

I had my second EC yesterday and seem to be coping with it quite well. Last time I had a port fitted which was uncomfortable afterwards and the sedation messed me up a bit, I think this time as i didn't need any of that it's just the chemo I need to deal with which so far seems ok, thanks to steroids!

I think pushing for a picc line or port is worth it given the option to spare the veins, but I know how stretched places are and not always able to use ports... I had a full lymph clearance on one side so I think that worked in my favour when asking for a port.

I did have a massive steroid crash on day 5 last time, planning a duvet day for that this week!

I'm being treated at Guys Cancer Centre so also South London area. I am using bupa insurance though so very aware I'm possibly getting an easier access to some aspects of care than others, having said that the timings seem very similar to others I know on the NHS route and docs all the same crowd too!

Sending good vibes to all! X

 

 

 

Soggs52
Member

Re: May 2022 chemo starters

Hi everyone

Good to hear how some of you are getting on. I had my second round of TCHP yesterday - I'm being treated at QA Hospital in Portsmouth which is pretty good but seems very overstretched. The chemo nurses were short staffed yesterday but still managed to do an amazing job despite being rushed off their feet but people with later appointments were having to wait for a while.

I had a bit of a funny reaction to the docetaxel yesterday so had to have some antihistamine and yet more steroids before restarting it and it seemed to go ok after that. The dr said I might be at more risk of it happening again so if it does then they'll give me the extra drugs before I take it. I do feel like I've got steroid overload at the moment with the tablets as well so I'm looking forward to finishing those later and hopefully I'll be able to sleep again tomorrow!

@woodfire27 I did one of the Look Good Feel Better workshops online a few weeks ago - the make up one. I picked up a few tips and got sent a massive goody bag with loads of nice bits and pieces in it which felt like a real treat.

@Coddfish I found my taste got much better in my third week when my mouth/throat had calmed down a bit but the first glass of wine I had tasted so vile I couldn't finish it. I tried again a few days later and it was nearly like normal. I hope you enjoy your break away - sounds like a really nice thing to look forward to. I was supposed to be getting married at the end of July so we decided to postpone the party until next summer when hopefully will be through the other side of all this but we're still going to get married at a small register office do - just need to change the date as currently it's booked for the day after chemo session 4.

@Zanna38 Good luck with your PICC line. My arm was sore after the session yesterday and is still painful around the cannula site today so I wonder whether I was just unlucky or whether this might be a better option for me too. I hope they're looking after you at St Georges - that's where I had my son. I also had a breast lump which turned out to be a cyst when I was about 36 weeks pregnant and they looked after me really well at the breast clinic there.

@ddlevs I hope you can get a PICC line sorted - can you hassle them before then so they've got time to get you in before your next treatment? I'm surprised they haven't suggested it to you after your last one. I found the dizzy feeling got much better last time around once I'd finished the injections - I hate them too. Mine start again tomorrow - I'm hoping it'll be easier to jab the needle in quickly this time!

Much love to everyone else and hope you're all doing ok xxx

woodfire27
Member

Re: May 2022 chemo starters

Hi,  thought I’d check in - hope everyone is doing well 🙂 …..I’m now day 5 after cycle # 3.  Feeling like things are really picking up pace and becoming more routine now.    I’m doing ok SE wise apart from an annoying cold I’ve caught off my son, so I’m all snotty and gross….can I take meds for this???  Hoping having a cold won’t delay anything.  Had an onco review;  my injections have been reduced from 7 to 5 as blood count too high, & also my liver readings was a little abnormal so we’re looking at giving me an extra week before final EC…I had been taking paracetamol for bone pain (told to switch to ibuprofen as doesn’t put so much strain on liver) so may have been down to this,  but also could have been inaccurate as had bloods done early due to jubilee bank hols - in hindsight they said should have done bloods on the day of chemo. 

I’m in Oxfordshire - so getting treatment at the Churchill,  which has a fab Maggie’s centre.  Has anyone looked at doing Look Good Feel Better workshops??? I’m going to do one about nails ahead of starting taxol 

Coddfish
Member

Re: May 2022 chemo starters

A little check in with all the lovely people who started chemo in May. I hope everyone is well and am guessing most of you have had or are approaching your second cycle (certainly those of us on 3-weekly or 2-weekly regimes). 
I am on day 8 of EC cycle 2. So far it’s been very similar to the first one, with the added bonus that taking peppermint oil daily seems to have minimised the IBS type symptoms I had during the Filgrastim phase of cycle 1. On the downside, I seem to have lost the edge off of my taste this time, whereas it more or less survived the first cycle. I am still eating normally but just not really enjoying a lot of things. A couple of attempts to drink a glass of wine have left me very disappointed!  Last time, I was able to build my exercise up to something close to normal by about day 11 or 12 and am hoping that is the case this time around too. We have booked to go on a short break (staying in a privately rented property) 2-3 hours drive away for the last part of the cycle to try to make the most of the better days, and to try to celebrate our wedding anniversary, just hoping our typically mixed English summer sorts itself out in time. 

Zanna38
Member

Re: May 2022 chemo starters

Hi @ddlevs - from my own experience it does sound like you should be having more frequent discussions with your oncologist about how things are going. I have chemo every other Tuesday and the day before I meet the consultant to discuss the previous cycle, side effects etc - she can then make any adjustments to my meds. The blood tests get done right after and I don't hear anything if they're ok. It sounds like you've been left on your own and that doesn't sound right to me. 

I've been using cannulas until now, but I'm having a picc line fitted before my next one as my veins aren't very good and they're worried about them breaking. I hope you can discuss this with your team and I hope you're feeling better.

 

For others in London - where are you all being treated? I'm at St Georges in Tooting. 

ddlevs
Member

Re: May 2022 chemo starters

@Soggs52 hi there, woke up this morning to a less sore eye, one less thing. I have my bloods taken 2 days before my treatment but no discussions with anyone just go to my chemo appointment. When I go next week I will mention it as also I want to ask about a picc line. Got 5 more sessions and last time the only vein they could use was in my swollen arthritic thumb joint. I'm on day 11 now and feeling good, the dizzy spaced out feeling has gone, was out yesterday driving and shopping etc. I had 3 days steroids on my first treatment and 2 days aprepitant anti sickness. Have got domperidone if needed for sickness but not been needed. Glad the 8 days of injections are over for this cycle, hate them. Hair is still solid, no signs of movement yet. Take care xx

Soggs52
Member

Re: May 2022 chemo starters

@ddlevs I hope you're doing ok - how's your eye? I'm so sorry to hear about your experience with the chemo hotline - that's really shit. I think you should be seeing someone before your next chemo. I have to see the oncology nurse before each session to talk through my side effects and have a blood test. I saw her this morning and she asked me about my side effects and answered my questions. She really put my mind at rest about some of it as I was having a major wobble. Are you having a blood test? They should do one in the 48 hours before your chemo session so they can check your blood levels are ok. Have you got anyone else you can talk to at your hospital? I was assigned a breast care nurse when I was first diagnosed and although I hardly ever see her I can contact her to ask questions. So I'd really recommend you contact yours or whoever your person is and tell them you want to talk to someone about your side effects before you have your next treatment.

And I'm really sorry about your hair - it's so unfair when you've finally got it how you want it.

My hair is still clinging on. My partner was laughing at me earlier when I was tugging it to see if it was coming out - he says I want it to fall out so then I can be happy about not doing the cold cap on Wednesday. He's not wrong!

I asked the oncology nurse about my steroid dose as I only had an IV infusion before my first chemo and this time I have got tablets to take for 3 days starting tomorrow, which will mean a much higher dose. I felt quite agitated after it on the first go and was worried about taking more this time. Apparently I should have been given tablets to take after my first chemo but as I managed without them I do wonder if I need to have so much. I hate feeling anxious! 😫

@Coddfish Thank you for your advice about the vaginal atrophy - that's really helpful. I've made an appointment to talk to my GP about it next week. I mentioned vaginal oestrogen to the oncology nurse and she said no so I will see what the GP says. 

@Zanna38 Sorry to hear about your trip to A&E - that sounds really scary. How are you feeling now? My temperature is still hovering around 36 and the oncology nurse said that I should probably be more cautious about what my temperature is if I feel unwell and should contact the chemo hotline if it reaches 37.5 rather than 38 (which is what they'd suggested before). 

@redbean Sorry to hear you're on TC too - according to the chemo nurse it's pretty hardcore so hope we can get each other through it. 

Much love to everyone and hope you all have a good week xxx

CatalinaD
Member

Re: May 2022 chemo starters

Hi. I cried when my hair started to fall out. It looked fine, then when I washed it with baby shampoo my scalp was on fire and it started shedding. This was day 18 of EC. 3 days later I still have enough hair not to attract attention. It is only a matter of time though. I totally sympathise. It feels more of a loss than my mastectomy. 

Looking on the bright side there is a similar saving of money for cut and colour. It also shows that the chemo is working because it is destroying the fastest growing cells. 

ddlevs
Member

Re: May 2022 chemo starters

@Soggs  I'm on day 10 of my first EC, keep checking my hair for fallout,  had it cut shorter 2 weeks ago but still can't get used to the fact I am going to lose my hair. Started with a new hairdresser 9 months ago and had just got my hair exactly how I wanted it and a lovely colour and great condition. The upside is I will be saving £100 a visit and no expensive products for a bit. Big hugs to you this morning 😘

redbean
Member

Re: May 2022 chemo starters

@Soggs52 

I’m on TC chemo. Day 14 and I just had long strands of hair come out when I brushed it pre bed. I color my hair so I’m used to breakage lol but this was long strands. My second infusion is June 14 so I had scheduled an after-hours haircut with my hairdresser, husband, and my two daughters! They’re excited to give me the chop! But I’m so darn sad. I don’t even have great hair! I hope I can make it til then. 10 more days?? I’m not on here too often but am grateful for all of you and the love and strength I feel here. XOXO, Redbean