75.1K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

November 2022 chemo starters

87 REPLIES 87
Dot2Dot
Member

Re: November 2022 chemo starters

Hello everyone - it's been very quiet on here lately, and hope that's because you're all doing OK and not too exhausted to post!

I had my 2nd docetaxel this week and am doing OK so far - did a full day's work yesterday and lots of housework. However, I know that's just the steroids and I'm likely to feel worse over the weekend. But I did feel good in week 3 last time - had a night away and managed some short runs and evenings out. It was good to feel a bit more normal, and I'm starting to feel I can see light at the end of the tunnel - only one more treatment to go, all being well. 

The worst thing for me currently is that I have pain in my veins in my right arm (have been having chemo through a cannula in my right hand). One of them is very sunken and lumpy and I can't fully straighten the arm. My chemo nurse recommended massage and gentle stretching. It's a bit miserable though as I have pain in my other arm from the node clearance still, so have been left without a good arm for reaching up to high cupboards etc. For me, overall, the big side effects everyone thinks about (fatigue, nausea, infection) haven't been issues - so I know I've been lucky in that respect. But I am finding that all the smaller things are adding up and are a bit depressing (the veins, the dry mouth, constipation etc). Still, onwards...

Diz68
Member

Re: November 2022 chemo starters

Hi good to hear from you rhubarblegs and yes we are well on our way now. I saw New Year as a turning point and so nice to have Spring to look forward to. Despite all my hospital dramas the one thing that has gone well is the cold cap and I have managed to keep pretty much all of my hair - I think it helps that it was very thick to start? It has maybe thinned a little but not noticeably. I think it also helps to tolerate the cap so amazing that you are persevering despite losing quite a bit. My understanding is it is worth it though, as it helps with regrowth. It is maybe because I had to bin the third EC and move to Paclitaxel that is gentler on hair and I am certainly tolerating it much better health wise. Early days though (4/12) and I believe the impact is cumulative so I have lots of nice hats and a wig in its box just in case! Take care all - getting there x

Rhurbarblegs
Member

Re: November 2022 chemo starters

Hi everyone, 

I've been following your progress and thinking of you all through the many ups and downs. I'm sorry that it's been such a bumpy road for Rabs and others - very glad to hear things are improving for you now.  I've finished EC and moving onto docetaxel next week. I'm persevering with the cold cap despite losing most of my hair - have just a thin covering with some straggly long bits, not a good look! - but I find it comforting to have even that. I wear my wig or hats when in company though.  

We're all a good way through our chemo now - keep going everyone, we're getting there!

Big hugs to you all xx

Doris74
Member

Re: November 2022 chemo starters

Hi all,

Cycle 3, day 9 here (Docetaxel) and I finally managed to leave the house! 😁🎉 It hit me HARD this time, 3 days totally stuck in bed and the rest on the sofa, but onwards and upwards for 12 days now. 👍🏻 I'm on my 5th different anti-emetic (Olanzapine) and this one actually seems to work - another 🎉! Not sure how long I'm allowed to stay on it as they only gave me 6 pills but I'll fight to keep it! Also, sleepiness is a strong side-effect so I've had the best two nights sleep I've had since I started chemo. Trying really hard to keep on the bright side here!!!! 🥰

@RABS17 hope you're picking up now?

@Dot2Dot glad you're not doing too badly on the docetaxel. I'm sure those hormonal symptoms are horrid though.

Everyone else - onwards! 💪

Doris Xxx

Dot2Dot
Member

Re: November 2022 chemo starters

Hello everybody - just checking in with an update, though my experience has been much less traumatic than some of you so far. Hope you are continuing to improve @RABS17 

I'm on day 7 of my first docetaxel cycle and the specific side effects haven't been too bad so far. I have a tiny bit of tingling/numbness in my finger tips (only notice when I'm typing) and had a small amount of joint pain for a day or two over the weekend. And my mouth is very dry - worse than on EC, but am trying to keep on top of that with mouthwash and honey. The thing that's been really debilitating for me is that I have been getting more menopause/hormonal related symptoms than I've had before. I used to get hormonal migraines - fairly mild pre-menstrual ones, but also had severe ones when I had big hormonal changes (like a miscarriage and stopping breastfeeding). I've had a migraine on and off for 4 days now, and nothing seemed to touch the headache. I've also been having lots of hot flushes. I know that's all to be expected as chemo stopped my periods, but it is miserable. Oh well - perhaps that will all be less bad on future cycles. 

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Rabs17 ❤️ that’s a positive bit of news your neutrophils on the way up 👍 there have been other over the years had to have a blood transfusion during chemo and that’s helped them too ❤️ just a quick reminder for everyone if your wee burns even without a temperature ring your team it could be a uti that’ll need antibiotics not just some over the counter stuff ❤️ 💕💕Shi xx

Diz68
Member

Re: November 2022 chemo starters

Hi Rabs that does sound more positive and i do know a blood transfusion can make a huge difference so fingers crossed. That is interesting about the old issues resurfacing and I certainly had that with deferred pain from an old back problem when I was first diagnosed. The problem is it makes us so anxious about what might be going on as we start to assume everything is cancer related - or I did at least. Getting it checked out for sure was the only thing that helped me so hopefully they will do the same for you. Here's to things moving in the right direction x

RABS17
Member

Re: November 2022 chemo starters

@Shi @Diz68 Yesterday was a better day from a blood point of view and my neutrophils doubled from 0.1 to 0.2 😂 - taking that as a positive that things are now going in the right direction! Infection markers are slowly coming down too. Will need a blood transfusion tomorrow as hb is so low but hopefully that will help. Main issue is that pain is still quite significant - they are now thinking that it may be an old pelvic abscess I had following surgery which has reoccurred - I hadn’t realised but apparently old infections can reoccur if they didn’t completely resolve at the time even if you are asymptomatic - learnt something new! 

Hope everyone else is doing ok with their chemo and having minimal side effects x

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Rabs17 ❤️ hopefully your neutrophils are improving ❤️ and your team have found what’s caused your infection, we’re here ❤️💕💕Shi xx

Tan2022
Member

Re: November 2022 chemo starters

Hi all. 
Just catching up on this thread. So sorry to hear about your problems @RABS17  and I do hope your levels have improved and you are feeling better. I’ve been lucky and not have that problem so I’m afraid I can’t offer any practical advice. But do keep remembering that you are in safe hands and you will get better soon. Keep strong and let us know how you are getting on. Take care.

 

Diz68
Member

Re: November 2022 chemo starters

I wasn't that aware of it at the time really but it was pretty scary to read neutropenic sepsis on my discharge notes. I didn't need additional support but was pretty close and felt awful physically and emotionally like I had no control. I did bounce back quickly though, and there was no question about continuing the next cycle of chemo - they really have seen it all before. Music is big for me, as is photos of good times and audio books. Lessons in chemistry was a brilliant book that got me through my early diagnosis - beautifully told like sitting and listening to a story. Thinking of you and sending love x

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Rabs17 ❤️ just wanted to share my neutrophils went below 0, it can happen, just wanted to share so you keep 💪💪👭👭 it can be hard to keep positive ❤️ I did have a cry by day 4 I just wanted to get home ❤️ and I did 2 days later when the neutrophils whooshed up ❤️ think there have been a few of us over the years who saw the suspected sepsis then suspected neutropenic sepsis on our notes which for me did add a bit to the 😳 of it all but I remembered my team had seen it all before and know what to do as does your team ❤️ my tune at the time was chandelier by sia because at the time it just captured how I felt. I don’t know if music is your thing but so much music helped our oct17 gang so much and we all pulled up our Kylie gold hot pants and held onto each other 👭 and remember breast cancer now and all of us here in the forum have got hold of you and we’re doing a bloods 💃🏻💃🏻💃🏻💃🏻💃🏻 for you which was the May17 magic trick that works 💃🏻💃🏻💃🏻💃🏻💃🏻 so we’ll keep at it till your neutrophils whoosh up ❤️💕💕Shi xx

RABS17
Member

Re: November 2022 chemo starters

So my neutrophils have dropped further today and are now pretty much non existent - I’ve just had a nurse come from critical care to say my obs are on the borderline for needing additional support though not quite at that threshold yet, and talking about things like neutropenic sepsis - just feeling very anxious generally although I know it’s pretty common and she said the vast majority of admissions are very similar. Keeping everything crossed things start to pick up soon x

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Rabs17 ❤️ the nurse said to me once your neutrophils start getting there they whoosh up ❤️ so that helped keep me positive when in casa nhs ❤️ now your date for today is to walk to the toilet and do a bit of the macerena walk while you go there and back 💃🏻💃🏻 it keeps you 😁 if you do silly things to pass the time ❤️💕💕Shi xx

RABS17
Member

Re: November 2022 chemo starters

@Shi @Diz68 Thankyou again both for your reassuring words - they have now switched to morphine as they feel it’s less constipating than codeine and although I don’t think it’s made any difference with pain, it’s definitely helped with my sleep last night! They’ve also added in another antibiotic. I think you may be right about everything reaching their lowest point of the cycle - everything continued to drop yesterday (have just had bloods done again today) and I am now on phosphate supplements too and borderline for needing a transfusion with haemoglobin levels so hopefully things will soon start to bounce back from here. 

Completely agree re laughter - the staff are all incredible and it’s been nice chatting with others on the ward too

 

Hope everyone else is doing well with their chemo x

Diz68
Member

Re: November 2022 chemo starters

Yes to all of this! I had zero neutrophils on admission and it was really quite dramatic in hindsight but i was completely out of it. They bounced back in 48 hours and I have not had a problem (with that!) since. I am now on weekly paclitaxel and seem to be doing ok. Laughter is key - one sweet nurse in amongst the chaos of the a & e admission (think 36 hours on a trolley) called me jumper girl (Im 54) cause she loved my wooly worn throughout with pj bottoms and the slippers I walked in the door in. It was so traumatic at the time but I can laugh now!

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

RABS17 ❤️ yes when you are taken for an X-ray while they are trying to find the infection your mind goes 🤯 and you imagine all sorts. You can talk to your team and ask them ❤️ I know my mind was in 🤯 when they took me for an X-ray then a previous cc messaged me telling me they we’re probably trying to find the infection and talk to my team ❤️ we’re here, quite a few of us had casa nhs stays so do keep chatting away on here 👭 at one point my Oct17 thread that  I was on had me laughing so much I had tears of laughter rolling down my face when the nurse came in and she asked if I was in pain and I held my phone up and said no, the forum girls are making me 🤣🤣🤣 by day 5 I was looking online at the Bristol stool chart cakes the doctor and nurse heads put up on line, it’s amazing some of the use of the chocolate bars they’d used ❤️ keep us posted and you could ask if you are in nadir phase and what your neutrophils count is if you want to know, I did I asked every time my bloods came back ❤️ 💕💕Shi xx

Dot2Dot
Member

Re: November 2022 chemo starters

@RABS17  - just a quick note to say how sorry I am that you've ended up in hospital, and over new year too. I hope you get some answers, or at least some improvement soon. But what a horrible time it must be for you. Sending positive. calming thoughts your way!

I had my first docetaxel yesterday. I was going to try the frozen gloves and socks for peripheral neuropathy as I'm really worried about that. But I also have raynauds and really feel the cold, and I tried them out at home and found them really painful. I took them to the hospital but the thought of using them was really increasing my anxiety. So in the end I didn't take them in. I hope I don't come to regret it.

I'm feeling OK today and have been working this morning, but I know this is likely to be thanks to the mega steroid dose and I can expect a crash sometime over the next few days.

RABS17
Member

Re: November 2022 chemo starters

Thankyou both so much @Diz68 @Shi for responding - it makes such a difference to know you are not alone. I think they are struggling with blood results to know what is caused by chemo and what is potential infection but I am definitely in the right place. I think every time they talk about scans my first thought is that they think the cancer has spread rather than thinking rationally about it and that they are probably just looking to see if they can identify a source of infection, but as you say, they don’t always manage to do that anyway. I think you are right about positive affirmations - I’ve just been to get some juice and saw something on the wall someone has painted saying ‘you are in safe hands’ so I’m going to start with that and trust in the process rather than trying to overthink it all 😊 x

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Rabs17 ❤️ you could be going into the nadir phase of your cycle where your neutrophils are possibly at their lowest ❤️ that happened to me after first chemo and I got admitted with a urine infection ❤️ do keep 💪 your team have seen it all before and know what to do ❤️ you’ll soon be back home and out of your casa nhs stay ❤️ it took 6 days when it happened to me but your neutrophils will bounce back if it’s your neutrophils ❤️ back in 2017 the May17 thread always did everyone a bloods 💃🏻 dance for anyone having casa nhs stay so here we go and I’m calling on everyone from the threads too let’s all do a bloods dance 💃🏻 for rabs17 and let’s to it to a tune of rabs17 choice, what do you want us all dancing to rabs17💃🏻💃🏻❤️💕💕Shi xx

Diz68
Member

Re: November 2022 chemo starters

Hi Rabs17

I’m so sorry you are going through through this and the middle of the night on a hospital ward is not good for thinking positively- I remember from experience! But you are in the right place and they have seen it all before. They never got to the root of my infection and apparently don’t in 80% of similar situations. Their theory was that we all harbour all sorts of bugs and fight them off routinely. When our immunity is compromised by chemo these can surface. Hopefully a ward round will happen soon and you can ask some questions- maybe write them down in preparation? Also a high temperature means you are not thinking straight so will be more upset and anxious as a result. Maybe swap in some positive affirmations- I’m in the right place, they’ve seen it all before, everyone is different and they are learning how I respond etc. I felt very upset that actually it was all out of my control when I thought I had a clear treatment plan I just needed to get through. It helps me to think of it as a journey we are navigating together and new information is helpful. I’m sorry you are ‘in it’ but now I am ‘out of it’ I promise it feels different and a blip rather than the catastrophe I felt certain it was at the time. Sending love ❤️ 

RABS17
Member

Re: November 2022 chemo starters

Hi @Diz68 - I’ve just been looking back through this thread and saw you have ended up having a couple of admissions after EC. I had my first one on 28/12 and started with a temperature on 01/01 and have ended up being admitted to our local cancer hospital who have been amazing. I’ve been on IV antibiotics since Mon and guess I’m just feeling a bit anxious tonight as I don’t seem to be responding to them and bloods are getting worse (they weren’t too bad before) rather than better and temperature going up further (was 38 on admission and tonight 39.4). They have talked about doing some imaging tomorrow I guess to try to identify the source of infection as there is nothing immediately obvious (I did start with an anal tear on 30/12 due to constipation and the pain with that is excruciating but they don’t think it’s related). Not really sure why I’m posting, I guess it’s just the middle of the night and I’m feeling a bit alone (the nurses are incredible but I can’t expect them to constantly reassure me!). Also I’m a nurse myself albeit a mental health nurse but I think having a little bit of knowledge sometimes isn’t always a good thing!

Hope everyone is doing well with their treatment and things are going smoothly. 

Take care

RABS17 x

Dot2Dot
Member

Re: November 2022 chemo starters

Hello Doris, and I'm very pleased to hear you were well enough to enjoy Christmas. At last a bit of a break in your side effects saga! I had a nice time too - mainly just relaxing at home with my husband and daughters, and some nice walks. I feel a bit guilty for saying it, but I have hosted visiting parents/in-laws/siblings overnight nearly every Christmas for the past 20 years, and it was good not to have to please anyone but my immediate family. 

I have a week to go until my next treatment, and do have some work I need to get out of the way before then but also hoping for some more relaxing and maybe a nice day trip somewhere. 

Doris74
Member

Re: November 2022 chemo starters

Hi all!

I hope everyone managed to have a nice couple of days for Christmas? I really wasn't expecting to so the fact that it's been great was a huge bonus! Hallelujah for sickness meds that actually work (4th time lucky!). I haven't had anywhere near so many other side-effects during this 2nd and 3rd week this time either. 👍🏻

Sounds like a good attitude to your delay @Diz68 . I think we all just want to truck through this as quickly as possible so any delay is upsetting but it sounds like the break will have done you some good.

Nice to 'meet' you @RABS17 !  You're on a very similar path to me with Pac first (I'm on Doc) then EC. I don't seem to have come across many people doing it that way round. Glad to hear you've got through the Pac so well. I've had just about every side-effect too during my first two cycles. I'm back in on the 3rd for cycle 3 of 4 and already dreading the first week. I guess we learn a little something each time that helps though.

Hope you're all still enjoying some lovely family time this week before life kicks back in properly again.

Doris x

Diz68
Member

Re: November 2022 chemo starters

Happy Christmas Eve everyone and welcome Rab. Good plan Dot. I've had an enforced Paclitaxel break as I woke on Wednesday with a temperature of 38.7 so they wouldn't go ahead. Fortunately it was just an normal virus as my bloods were ok so no hospital this time! Who'd of thought I would be grateful for a bug! Felt pretty rough but so have so many people around me so I guess it was inevitable. And if ever there was a chemo to miss it is the Christmas one. Fingers crossed it goes ahead next Thursday. I did get upset about the whole delay thing - both in terms of efficacy and prolonging it - but I have relaxed about that now.

So - here is to trying to relax, put cancer to one side as much as we can, and looking forward to a better 2023 for us all x

Dot2Dot
Member

Re: November 2022 chemo starters

Thank you, Rab - that's all useful to hear. (Btw - I think you can only 'reply'. I find the interface a bit confusing too.)

Sending best wishes to everyone on the thread. I am going to try to take a few days off from all things cancer related, and enjoy some walks, some nice soft food (sore mouth) and a lot of sofa time. 

RABS17
Member

Re: November 2022 chemo starters

Hi all, I’m not sure if I’ve done this right as I couldn’t see how to create a new post so I’ve just replied to one. I’m a bit late to join partly as I started chemo at the end of October so wasn’t sure whether to join Oct or Nov so have been following both! I just wanted to share my experience as may be helpful for others - I was diagnosed with TNBC at the end of Sept, grade 3 with spread to one lymph node and the plan is for chemo followed by surgery and radiotherapy. I have actually just finished 9 weeks of weekly Paclitaxol and Carboplatin and am due to start 3*3 weekly EC next week so it’s been really helpful seeing other people’s experiences of EC but have also seen that some of you are now moving on to either weekly or having Paclitaxol / Docetaxol. I can also speak for Paclitaxol but wanted to reassure you that although I have had the full range of side effects in terms of nausea, upset stomach, heartburn, aching, fatigue, skin rashes, mood changes etc, none of them have been unmanageable and the additional medication that is given has really helped and I have been able to continue with a relatively normal, albeit slightly slowed down life and have been able to continue working from home 3 days a week which I have found a great distraction.  I definitely have had a dip in mood around day 3-5 which I think is after the steroids have worn off and the injections have started but now anticipate this and plan some nice things in for those days. Hope this is helpful for anyone switching to this or similar regimes and thankyou for sharing all your experiences 😊

Doris74
Member

Re: November 2022 chemo starters

Oh, and also, my hair is falling like snow!!!! It's such a weird feeling. I think I will be completely bald by Christmas day but I'm willing it to hang on so I can get a non-bald family photo! 🤞🏻

Doris74
Member

Re: November 2022 chemo starters

Hi @Dot2Dot , hope your daughter feels better soon. I can just imagine how tiring those stairs were!

I'm cycle 2, day 9 Docetaxel and still struggling. Days 4&5 are the worst, not only physically but also emotionally. I was so incredibly down, and morbid, which is not like me at all. Each day from there picks up a tiny bit but I'm still struggling really badly with nausea. I have to go to the hospital to pick up yet another new anti-emetic tomorrow. Fingers crossed. Again.

Hope everyone else is doing ok. xxx

Dot2Dot
Member

Re: November 2022 chemo starters

Morning everyone - just checking in to see how everyone's doing. I'm day 7 after my third EC now, and not doing too badly. I was struggling over the weekend partly because I had a poorly daughter to look after. I was exhausted yesterday - I think it was the post-steroid crash, combined with the physical effort of going up and down the stairs from her bedroom to kitchen over and over again. How feeble does that sound! But I did what I hope was my last ever filgrastim injection last night, so that feels like progress to celebrate. 

 

Dot2Dot
Member

Re: November 2022 chemo starters

Interesting thoughts about work @Diz68 . I'm still doing bits of work as I'm freelance, but all my work is with a group of associates at the moment, and they have been extremely supportive about letting me pick and choose which bits of projects I do, and I don't find it stressful at all, really - more welcome distraction. A year ago, I was in a job I found very stressful (I was deputy/operations director for a small charity that was in a very financially precarious position, with a boss who was great at the big picture and hopeless at the work of translating that into detail. So I felt like I had a lot of weight on my shoulders - and like you say, lots of fixing other people's problems). I left in January when I restructured myself out of a job and at the time thought I'd try freelancing for a year and see how it went. But the cancer experience has convinced me I don't want to go back into an organisational role. So maybe that is one small silver lining in this massive cloud (that and my chin hairs having disappeared - I've got back 5 minutes every day!)

Diz68
Member

Re: November 2022 chemo starters

Yeah to third and final EC! It sounds like you are being very proactive in managing things which is great. I hope next week goes smoothly for you and my mood is definitely not constant and have some really good days where I feel positive and almost forget. I am also starting to see some of the benefits all of this has had on my life - work stress or lack of especially! It comes to something when you are sleeping better with breast cancer than you did with your job! My husband had a useful insight - with cancer you hand over the stress to the experts and just do as you are told - with work it is down to you to make decisions and fix other peoples problems. I found that helpful - he has his uses! Including taking my temperature and saying we had to ring the hospital now with what turned out to be sepsis. Wishing everyone some fun times in between the inevitable tricky parts of the coming weeks x

Dot2Dot
Member

Re: November 2022 chemo starters

Morning everyone, and thank you all for sharing this journey - it really helps to read how you are all getting on, and I'm sorry some of us are having such a hard time.

I had my 3rd and final EC this Weds and was pretty wiped out yesterday. Feel much better today, but am conscious that it might be the steroid boost that you mention @Diz68 

I am also cutting corners with cards and presents this year. I figure that if ever people's expectations with be low, then it's now.

Interesting to hear that others have also experienced low mood. I have some nice distractions planned for Monday and Tuesday which is when it hit me before. I have also arranged some counselling via Macmillan and have my first session next week, which I hope will help. 

Diz68
Member

Re: November 2022 chemo starters

Good to hear from everyone and thanks for the insights and warm wishes. Well that’s it done. Cold cap ok after the initial shock and for the pactlitaxel I had an iv anti-allergy drug first and it was like being injected with sleepy dust! I dozed off through the whole thing! It meant it flew by! Planning to take it easy today and tomorrow (maybe some online ordering and wrapping) and not get too excited by the steroid high I usually get on Friday. And then it’s a case of waiting to see and hoping it goes smoothly. Lots of people confident it should so that’s good. I’ve binned Christmas cards and will donate to charity and will do what I can but everyone understands and are shocked when manage anything knowing how this takes it out of us ❤️🎄

Tan2022
Member

Re: November 2022 chemo starters

Hey. Nice to read all your updates.

I hope your first AC goes ok on Friday @emc1017 .  Actual treatment day was fine for me. I was supposed to start a week earlier but my veins weren’t behaving, so they delayed so I could have a PICC line put in which I’m very glad to have. I didn’t find the cold cap as bad as I expected. It was incredibly unpleasant initially, but that only lasted a couple minutes and then it wasn’t too bad. I found the strap under my chin uncomfortable so next time I  will try to take some padding for that. I had a good headband which kept my ears and forehead warm(ish). I’m also going to try to get my AirPods in next time (not sure if it will be possible though).

My main side effect was incredible acid reflux and heartburn which started the first night. I’ve never had it prior to chemo. I took some otc meds and followed the general advice ie re eating etc and it got better but was still a problem.

No scary reactions like Diz ( I do hope things are more settled for you @Diz68 ). 

Very interesting to read about people’s ‘down days’ as I also had that which is very out of character for me. Not sure if it’s my hormones or what but I didn’t expect that. It only lasted a couple of days thankfully.

Take care everyone and hope you are managing to enjoy the build up to Christmas. X 

Doris74
Member

Re: November 2022 chemo starters

Hi all, Sounds like everyone is doing really well and nailing this chemo b¡tch!

Diz I know it's been difficult for you with those two cycles, good luck with the weekly Pac. I'm currently on 3 weekly Docetaxel but was told if I couldn't handle it (all those pesky chronic illnesses I already have) then I'd need to do the weekly Pac instead. Hopefully that means it'll be so much easier for you over the next few months. 🤞🏻

I had my second Docetaxel Monday as, as expected, am in bed today with fatigue and pain. Thankfully over been out on some much better anti-sickness meds this time so I'm really hoping for only 4-5 days of this then a better couple of weeks. I had a really rough 3 weeks with the first cycle, pretty much ticking off every side effect listed. 🤦🏼‍♀️

I'm desperately trying to get my head around Christmas at the minute, in between sleeps. We're not quite sorted for the kids yet and barely thought about wider family! I think my husband is now realising just how much I do!!! Anyone else finding that?! 🤣

Right, time for another nap. Keep on trucking on everyone, we've got this! 💪

 

Doris xxx

Diz68
Member

Re: November 2022 chemo starters

Hi everyone and welcome to newbies and popping in to say hello folk. I’ve had two EC so far and despite major reactions and two admissions the one thing that has gone smoothly is the cold cap. I’ve not had any hair loss (touching wood) and although uncomfortable I found it much easier second time. My tips are damp hair (wet then wrap in a turbin and then use a water spray) and a blob of simple conditioner. I avoid washing my hair if I can, so save it for times I am going out. Even if it starts to fail now it’s made a wedding and a few Christmas parties. I do have a wig and good hats as a fall back but not required so far. My chemo has been less smooth and a decision has been made to drop the third EC and start weekly paclitaxel for 12 cycles. On the one hand I’m relieved as the thought of another admission fills me with dread but on the other hand I’m a bit worried I’m not having the full blast they had planned. My consultant doesn’t seem concerned so I will have to trust they know best. Good luck everyone ❤️ How do people find paclitaxel compares to EC on the side effects/getting on with life front?

Diz x

emc1017
Member

Re: November 2022 chemo starters

hi @Tan2022 - glad you have one chemo down. i am having my first AC on fri 16th. also going to cold cap - any tips? i am in the December thread but thought i would pop in here for a nosy too! 😊 also any tips for general side effects? from what i have read, LOTS OF WATER, good nutrients and some exercise seems to be working to combat some of the fatigue, and taking the anti-sickness meds even if you don't feel sick?. hoping for the best. 

Dot2Dot
Member

Re: November 2022 chemo starters

Hi Tan, and welcome. I'm a few weeks ahead of you - I have my third round of EC this week. Like you, I've felt much better in weeks 2 and 3 though I think the tiredness has persisted more this time round. (Not horrible fatigue, just falling asleep on the sofa at 8pm while trying to watch TV!)

On the hair loss, I chose not to use the cold cap, and mine started pretty much exactly when people said it would - Day 14 post my first treatment. It got really annoying within 3 or 4 days and I got a friend to give me a buzz cut. Not sure if that's helpful or not. Hope the cold cap works for you. 

Becky M
Member

Re: November 2022 chemo starters

Hi, 

hope you’re doing ok, I had EC this time last year, I was surprised how long my hair lasted. It wasn’t until the 3rd cycle it started coming out a lot. I didn’t use a cold cap though. Eyebrows lasted all the way through EC just a bit thinner. 
Good luck with everything, thinking of you. 
Becky x 

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Hi Tan2022, sorry you find yourself here but do use all that Breast Cancer Now can help support you with ❤️ the people who used the cold cap from Oct17 chemo thread I was on just thinned on top a bit during chemo and were happy they’d stuck with it 👍💕💕Shi xx

Tan2022
Member

Re: November 2022 chemo starters

Hello everyone 

Hope you are all ok.

This is my first post (wish I had found this forum sooner - it’s very informative!)  

I was wondering how everyone is getting on now? I hope everyone is coping ok. 

I had my first cycle of EC chemo on 28th Nov. The first week was pretty horrid tbh (fatigue and nausea mainly) but I’m feeling much better now.

I did use the cold cap and plan to use it for my second cycle on 19th Dec.  What’s your experience of EC chemo and hair loss? I haven’t lost any yet, but is it too early? 

many thanks

Tx 

Rhurbarblegs
Member

Re: November 2022 chemo starters

How are you getting on now @Doris74 ? Do you have a picc line now? I opted for one and barely notice it now. Just to say that if you have, it's worth getting a Limbo arm protector on prescription from your GP - so much easier to keep the picc dry in the shower! X

Diz68
Member

Re: November 2022 chemo starters

Hi both and thank you so much for your concern. I can relate to the down days from my first cycle. Makes sense of course, but came and lifted suddenly so I’m certain it was drug related with a bit of this is relentless thrown in. My first admission was the rare but predictable neutropenic response which is why those temperature checks are so important. It was a model admission too as there were beds in our fabulous cancer hospital. The second admission was unrelated. They think the injection to stimulate white blood cells went into overdrive extracting bone marrow from my lower back, hence the agonising pain (I’m talking comparable to labour). Unfortunately no beds in the Cancer hospital so a & e it was and 36 hours on a trolley as they worked out what was going on. The Oncology senior reg turned up like a fairy god mother on Tuesday and said I could go home but everyone was anxious given my sepsis response last time, including me! So. I don’t mean to alarm anyone and I’m home and fine but these are big drugs we are on! It’s all a balance especially as my chemo is post surgery and I am preparing for conversations about whether the cons outweigh the pros now. I know so many who get through it straight forwardly (but never easily). This is hard folks!

sending love

Diz 

Rhurbarblegs
Member

Re: November 2022 chemo starters

Relieved to hear that you're back home and doing ok now Diz. We know little about each other apart from this one thing that links us all, but we share the same fears and dilemmas - and were worried about you. Rest and be kind to yourself.

Dot - I'm sorry to hear you've had a tough couple of days too, and glad you're coming through that very down patch. You're wise to plan around that for next time.  I was interested to read your posts: I've only had one cycle so far but your days 6/7 seem similar to my days 8/9, when I felt rough and inexplicably down and despondent. Well, not inexplicable to us, but you know what I mean! Next time I will definitely rest more from the outset, I thought maybe that was part of my problem.

Thinking of you all x

 

Dot2Dot
Member

Re: November 2022 chemo starters

Glad you're home, Diz, and sending best wishes to you and my other chemo companions. I'm on Day 8 of second EC cycle now. Feeling OK physically, but have had two really miserable, low days where I've felt very bleak. This happened to me last time too around day 6/7 - couldn't see any light at the end of the tunnel, endlessly running through all the negatives not just in my current situation but my entire life. I am feeling a bit brighter today, and taking some comfort that it is at least in part the chemical changes in my brain making me feel like this. I'm going to plan something in my diary for the equivalent days next cycle - maybe book something in with a friend or get my husband to take half a day off work. In the meantime, I have given myself a manageable to do list for today: 2 hours of work, 1 hour of walking and 30 minutes of Christmas shopping. Hope that will help keep the gloom at bay. 

Diz68
Member

Re: November 2022 chemo starters

Thanks everyone. Home now thankfully. The team are great and I will have a long discussion with my oncologist but it sounds like I am facing the risk benefit discussion we all know so well about whether or not I have my 3rd EC. The short term appeal is definitely there but the long term “what if” is a big one. Especially if the cancer comes back I have to go through chemo all over again…..But for now rest and recovery as I look forward to some nice times. That is the one good thing about 3 weekly cycles isn’t it x

Rhurbarblegs
Member

Re: November 2022 chemo starters

Diz68 I'm so sorry to hear you're having a rough time, and hope things are improving now.  Sending you love and thinking of you x

Doris74
Member

Re: November 2022 chemo starters

Oh no @Diz68 ! ☹️

Sending you lots of hugs for feeling better soon. This is just horrid for you. Like the wise words below though, the team have probably seen all this before and know what they're doing/how to tweak your treatment to help. Fingers crossed they get some answers for you quickly. 

Doris xxx

Shi
Community Champion
Community Champion

Re: November 2022 chemo starters

Diz68 ❤️ sorry you are in casa nhs for stay again ❤️ it is 😳 because you are doing your best ❤️ please take a bit of comfort that your team have seen it all before and they will know what to do ❤️ please keep us updated👭 we all understand 👭 and we’re here 👭❤️💕💕Shi xx