Hi everyone, it’s been a long time so I thought I would check in to see how we are all doing - hope everyone is doing ok.
I am almost 5 months post chemo & hair is growing back quite well now but it is still really short. My eyelashes have also come back - my eyebrows somehow clung on for dear life through out the process.
I am back at work & getting my life back bit by bit. I definitely feel differently than I did pre cancer but thankfully I’m doing ok. Best wishes to all xxx
@SinduKumar I’m having the same issue with sleep - at the exact same time! As well as feeling bit anxious/on edge for no reason. I thought it might be due to the Tamoxifen tablets that I’ve started on 2 weeks ago.
My radiotherapy starts in 4 wks.
I reckon everyone is in the last stage of chemo. Mine got over last week and feels good not to go for bloods today.
Radiation begins end of this month.
I noticed last few weeks there has been disruption in my sleep pattern. Usually after REM sleep, I seem to wake up around 2:30-3 a.m. and struggle to fall asleep for 1-2 hours after that. Has anyone experiencing something similar? Is this supposed to be chemo side effects? I am hoping it does not last long.
well had my pre-chemo appointment with my oncologist couple of days ago and she explained that she was happy to stop any further chemo now given the hit that my body had, so now planning for radiotherapy will start and I’ve started on the Tamoxifen. She explained risk is low given my circumstances and situation hence she decided it was best to stop, had 4 rounds of it.
@Meanegg ive started using the nail oil by Jennifer Young as id come across a website for cancer patients and that oil was recommended. Lets see how it goes.
Looking forward to hair growing back although i understand due to Tamoxifen it will be take a bit longer.
@Jussie gosh that docetaxyl completely messed my tastebuds up too for about 8 days and nothing was able to relieve it! I could only taste sweet things. Even strong flavoured crisps tasted horrible whereas previously with the EC chemo prawn cocktail or cheese and onion crisps would do the trick!
Good luck to everyone on their final rounds of chemo!
sorry to hear you got an infection 😩
I’ve had Docetaxel twice now and it is potent isn’t it?!! The first time over Christmas it was like a scene from trainspotting but with less vomit! I phoned the chemo helpline a few times on Boxing Day but no one answered!
My taste buds completely went for about a week and everything tasted disgusting and furry including water. I ate lots of grapes which were fine but completely went off savoury food. Did you find anything that worked for you?
@SinduKumar Thank you - I’m so glad it’s over - hopefully none of us will ever have to do this again! I hope the rest of your treatment goes well - nearly there now!
@SB165 you poor thing that sounds rough as anything - glad you are ok now and you are able to continue with your treatment & have no more reactions (that must have been scary!). Hope your nails hold on. It might be worth trying Jamaican Black Castor Oil - apparently is supposed to be good for hair & nails. I’ve been using it for a few weeks now and my nails are doing really well. Not sure if it’s the oil or just down to luck but it may be worth a shot. I’m also using it on my head and some tiny hairs have started to sprout!
Good luck everyone & stay well 🙂
Hope you’re all doing okay.
Apologies for the lack of messaging on my part, on new yrs day I started getting shivers/fever and ended up in hospital for one night, was sent home with antibiotics which didn’t work so was back in hospital after a few days and ended up staying for 12 days. Was a viral infection of some sort, but it took about 2-3 different antibiotics to bring the infection down. Much better now, got my 5th chemo tomorrow (docetaxyl). Nails have been going dark since the last docetaxyl 4 wks ago, fingertips skin has started to crack too.
Anyway that first time the docetaxyl was administered, within 5 mins I suffered an allergic reaction and started feeling faint. Apparently its common for that to happen. They stopped the drug immediately, gave me a steroid and antihistamine for 30 min then tried again and i was fine.
But gosh that docetaxyl is very strong! My tastebuds were even more messed up! Oh well just 2 chemos to go! Will get through it.
keep smiling everyone 😊
@Meanegg well done for finishing chemo. You have been one of my inspiration during this chemo journey and I wish you the best for upcoming treatments if any. My colleague who went through this before me had her hairline, eyebrows etc appear within one month after finishing chemo. So hang in there, I have heard after the initial fluffy hair, the skin/ hair that eventually grows will be nicer. Fingers crossed.
2 more weekly taxol left for me. Oncologist already briefed me about radiation which will start 2-3 weeks after chemo. So kindly of mentally preparing for that.
Well done everyone who started in Oct and nearing the finish line. Wish you all the best.
Hi @catbee22 I’m glad your infection is over now but sorry to hear your treatments have been delayed. Hopefully your liver levels will come down soon & you can get back on track.
I have limped my way over the finish line & finished my chemo this week. I was lucky as my blood count was just above the threshold my 7th cycle & my liver levels were high before my last one but they still let me have it. I’m not sure what the liver cut off is but mine went up to >130 whereas I think normal levels should be <40! Hope my levels haven’t gone doolally after this final one! I feel ok physically though just tired.
I thought I would be euphoric now that it’s chemo is over but I don’t, I feel like a wreck! I have no hair & feel drained - a shell of my former self & can’t imagine getting back to some normality! Hopefully I will snap out of this slump soon..
Good luck to everyone & hope you are all getting nearer to the finish line now & are doing ok xxx
Hi thank you for replies- turned out to be viral infection that lots of people around me seemed to have in the area! Seems to have pretty much gone now.
I am very frustrated as my 5th round of 6 has been delayed for 3 weeks in a row so where I was meant to be finishing my last round this Wednesday and not I’m still waiting for my 5th! My liver enzymes are too high after change to docetaxol on round 4 after 3 rounds of EC. They went up again last week and they think this might me from the paracetamol I was taking for virus… very frustrating…! Don’t know if I can finish all 6 rounds or will have both but will make everything delay and feel worried about it all. Has anyone else had this.
hope everyone ok and coping with side effects !!
Hi @catbee22 - hope you managed to get something to help with your throat & ear pain. I’m having Paclitaxel and have been told mouth problems can happen so hopefully there should be something that can help you deal with your throat & ears!
I hope everyone else is doing ok. I had my penultimate round of paclitaxel yesterday so hoping I can make it over the finish line with my last one in two weeks time! I had a low red blood cell count before my 6th one (it still went ahead as they were just within range).
I was afraid my bloods would have dipped again and would delay yesterday’s cycle but thankfully they rallied! I ate loads of kale, spinach, mangoes & beetroot over the last two weeks to give them a little helping hand!!
I felt very lightheaded after round 6 too but that eased just before cycle 7 - just hoping I don’t get it again this time round but so far so good do fingers crossed 🤞
good luck everyone xx
@catbee22 I haven't experienced it. Hope they give you pain killers or something. Take care
Hi I am replying as I can’t see how to do a new comment!!
i can’t believe I haven’t found this forum before ! I also started in October … I have had 3*3 EC and have had one Docetaxol and waiting to have last two… round 5 has been delayed twice as my liver enzymes are too high … and then change of consultant means treatment day changes so now really delayed but hopefully having it on 9th. I have had an awful sore throat and ear pain for nearly a week. No temp and not really a cold but I’m wondering is side effects ! Has anyone else had this ? Feels like broken glass in my throat and horrendous ear pain. I mentioned to chemo line and they said as long as no temp should be ok but think I might ring again tomorrow as it’s just no better after nearly a week …
Ha! I remember weebles. Yes it’s quite odd and hopefully you’ll wobble but won’t fall down! Stand up slowly and don’t walk uphill! X
@Jussie that sounds miserable - hopefully they can confirm whether that’s normal and if so suggest something to make it a bit more manageable and to allow you to continue as planned. I’m ok if I’m sat down but when I’m walking feel like the old weeble toys!
Yes I had the injections too for 5 days after chemo which was the same as the EC regime. Paracetamol didn’t seem to work but ibuprofen did on day 2 of the pain. It was like waves of increasing pain under my skin across my back mainly.
EC also made me feel dizzy as I had low haemoglobin but it was manageable and didn’t last beyond 10 days x
It didn’t start until day 5 in the evening and was really bad for about a couple of days now just very sore stomach pain and nerve ending pain as well as feeling sick. Ibuprofen helped so I’d stick up on them but I can’t go through this again and not sure if it’s normal. I expected a bit of joint / bone pain but not what I experienced. I’ll definitely talk to my oncologist about this. Good luck with your cycle today! I got a massive dose of steroids so got loads done the day after! X
Hi @Jussie and @SB165 - did you have the injections too as I know they caused a lot of deep bone pain (I think it was those rather than the chemo as it wore off once they finished) particularly in my jaw and leg and back muscles. I found it helped with the aching to use paracetamol and heat packs and to keep moving when I could but I know of others who have had stronger pain relief so definitely worth contacting helpline - they seem to have something to help every symptom!
I had my first EC yesterday and have definitely felt a bit more nauseous though managing to eat little bits but I also feel quite woozy and unsteady on my feet which I believe is normal? Starting the injections tonight for a week this time 😫.
Hope everyone else is doing ok x
gosh that sounds horrible. Where was the pain? I’ve got my first round of Docetaxyl today actually.
Did the pain just relieve by itself? How long did it last?
i can’t see how to make a new post so replying to yours.
how did you get on with the Docetaxel? I had my first round of it last Wednesday after 3 rounds of EC. On about day 5 for me ie Christmas night I got terrible pain tothe point where it was making me cry and I couldn’t sleep for more than 15 mins as the pain was waking me up. Painkillers weren’t working and I didn’t know if this was normal but no one was answering the chemo helpline Boxing Day morning. I’ve now woken up on the Wednesday and feel more normal again but I don’t think I can go through that again with the next 2 rounds I’m due on the 11th and the 1st feb, I really don’t.
i hope your experience isn’t as bad as this?
@Meanegg re beetroot, once you have finished the jar, its best to buy it fresh then roast it or boil it, as the preservatives that are in the beetroot that comes in the jar will not help acid reflux
Hi all, Hope you all had a nice Christmas & are all doing ok.
@SB165 I haven't a juice extractor sadly (I had one years ago but it was a faff to put it together- no idea where it is now 🙂 I have a smoothie maker but not too keen on the consistency so my daughter uses that mostly now! Thanks for beetroot suggestion though -I hadn’t thought of that. I bought a big jar and actually really like it which is good 🙂
@SinduKumar I wonder why they have given Paclitaxel to me every 2 weeks instead of weekly but hey ho will plough on (hopefully I can stick to schedule!) I hope yours is going ok. I haven’t been too bad this time - just a little light headed (thankfully that seems to have sorted itself out as it was not nice!). My toes & fingers are bit tender but not too bad.
Welcome @RABS17 but sorry you find yourself here! Good luck with EC - I had 4 cycles of that every 2 weeks and didn’t find it too bad - the most alarming thing I found with it is the red colour of it & red colour wee after! They warn you about that though so was not a surprise but still a little disconcerting!! I wasn’t a fan of the filgrastim injections but like anything you get used to them. They don’t hurt - I just found I had to psych myself up to do them!
I also have a nose in the other chemo monthly threads as you can pick up a lot of useful tips from everyone.
I started wearing my wig around the house to get used to it and to become confident going out wearing it. I got a wig band as I was afraid of it slipping - it seems fairly secure now so fingers crossed it doesn’t slide around or worse fall off!!!
I have my penultimate cycle next wed so really hoping that can go ahead - that finish line is visible now -I just want to cross it finally!!
Good luck everyone xxx
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 😊
@Meanegg Hope the next two chemos are manageable. Mine is weekly taxol for 9 rounds and dosage so far is very manageable. Yours is once every two weeks, so must be stronger dose. But hope you can keep up with energy. Have lots of calories. I heard for weekly taxol towards the end the energy levels drops, like the effects are cumulative. But by spring next year, we would all have finished this active treatment. Here is to better 2023. Wish you all some respite and joy this holiday season. Take care everyone x
@Meanegg Glad to hear you are doing okay.
Im feeling alot better this week.
My 4th chemo is next Thursday, which will be the first one on the docetaxyl.
Re blood count , if you have a juice extractor, have apple, carrot and beetroot juice every morning - that will make a difference and also gives energy.
Wishing everyone a lovely festive period and heres to a happy and healthy 2023
Hope everyone is doing well & feeling ok. Hope you all have a restful relatively side effect free Christmas.
I had my second paclitaxel yesterday and so far so good. I developed sore fingers & toes midway through last cycle & doc confirmed that it is peripheral neuropathy so reduced my dose for cycle two. Hopefully this will prevent it getting worse. It isn’t too bad at the moment & I don’t have it every day.
I was also quite lightheaded at the end of my last cycle but this thankfully only lasted a day.
I may also need a transfusion as my red blood count is lower than before but was within range for chemo to go ahead. This will be reviewed before my next cycle.
I hope I don’t need it & treatment can continue as I am desperate cross the finish line now - two more cycles to go! I am trying to improve blood count count by eating mangoes, beans, lentils & spinach 🙂
Good luck everyone & take care of yourselves - here’s to 2023 being a better year for us all!!
I too have pretty much same side effects as @Meanegg Muscle/ back/ shoulder pains but not too bad. Took paracetamol twice. Mine is weekly for 9 rounds so dosage would be lesser. The hangover/ fatigue that was present for few days after EC is not present in this one. First day had constipated stool but it got resolved without medication too.
Hi Kchest, I started Paclitaxel last week and so far have been been pretty much ok. I have found it a lot better than EC (which I didn’t think was too bad).
Key side effects so far include sore tips of fingers which I only had on on the second day. I dunked them in ice & that seemed to sort it.
I also have back/muscle aches/pains which come & go and are not too bad so far. I have had no nausea or taste issues so that’s a bonus!
I’m having it every 2 weeks & have 3 more left so hopefully the side effects don’t get worse with each session. So far though it is definitely easier on my system than EC.
Good luck & hope you find it ok too
I'm due to start Paclitaxel next Tuesday and just wondering if anyone else is on that and how have the side effects been? I've kind of got used to the EC side effects so was shopping based on what I knew I could stomach food-wise given the nausea and funny taste-buds. Do you get the same with Paclitaxel or is it predominantly neuropathy?
Epsom salt baths can help with tge bone pain, it can make you feel like being in a vice. Yes the peripheral neuropathy can happen so you must tell your team at all times on this ❤️ I was lucky my onc got my antisickness meds ok from the start so never had any nausea or sickness ❤️ but the docetaxol did give me lava bum 🤣 so be aware if you feel you are going to go, you probably will within seconds 😳 lava bum. 💕💕✨✨Shi xx
@Shi thanks for the warning. My oncologist explained that the main side effects are bone pain, peripheral neuropathy and fluid retention. She also said i would start the dexmethasone steroids 1 day prior to the chemo so they have given me those ready in advance. She said there would be no nausea after the docetaxol
Sb165, docetaxol can give you a runny bum so get some Imodium at the ready, it gave quite a few of us a slimy mouth, like you’d got a soggy cabbage leaf in there. It’ll probably see off any remaining lashes and brows if you’ve clung into any too. If you do have a reaction during the infusion (you might suddenly feel hot and your chest might get tight) or anything else that doesn’t feel right, shout your team immediately they will stop infusion and buy a bag of antihistamines on you probably, it’s doesn’t happen to everyone but there’s been a few of us over the years have a reaction and 😳 so just wanted you to know. Others then got switched to abraxane, I had another fec for my last chemo after my reaction on my 2nd docetaxol. Keep focused and get a big treat planned for when you finish chemo ❤️💕💕✨✨Shi xx
My makeup bag got delivered yesterday! It’s fantastic! Definitely recommend anyone to join that session if they haven’t done so already
So im actually going to be having Docetaxel for my remaining 3 chemos (not Paclitaxel). Has anyone else been having Docetaxel?
@Meanegg ive been using the Deresina sleep caps, very comfortable compared to the ones from annabandana but they do slip off. Oh well its okay will manage 😊
You are right Picc line fitting was ok & not at all painful! I had the it fitted yesterday morning & had my delayed chemo straight after. My chemo was only delayed by 1 day so hopefully my cycles can continue as per schedule.
I started Paclitaxel yesterday & Picc line made it a doddle - I was really nervous about pac but so far so good 🙂 I feel so much better today than I did on day 1 post EC so really hope the next few days will be ok too!
I find Deresina Sleep caps (Amazon) really good. They don’t slip off & not too hot but still keep my head nice and toasty so worth a try
I got a picc line fitted and it’s a 0/10 for pain and I’m very needle phobic but honestly it was not even as bad as taking blood for me - which you can now do via your picc line and you don’t feel a thing! Xx
Yes im looking forward to the bag of free make-up!
Can I just ask, what kind of sleep caps are people using? Ive tried pure cotton one and also bamboo and cotton one, but they slide off and its really annoying having to keep putting them back on. Causes broken sleep when you’re already trying to have a good night sleep.
Hey all, hope all good for everyone & also a shout out to fellow Paclitaxers - hope it goes well for you this week. I was due to start Pac today but veins staged a protest - 4 cycles of ECs every 2 weeks has pretty much caused my veins give up and they have given chemo the two fingers 🤣
Having a picc inserted tomorrow (not looking forward to that at all but needs must at this point!) I hopefully will be able to reschedule today’s missed session as soon as poss!
I also attended the Look Good nail & skincare sessions - got an amazing goodie bag through post from the makeup one! I am doing a wig & eye brow/lash one next Monday so hopefully will learn how to do eyebrows (mine still hanging on for now)
Take care everyone hope it is going as well as it can do for you all xxx
I’ve got my third EC chemo tomorrow, them from number 4 i will also be changing to the Paxitaxel. Lets see how it goes!
Joining the skincare & makeup workshop this afternoon through Look Good Feel Good. I joined the nailcare session couple of weeks ago but got bored lol.
Hi! How are you all keeping?
After first 3 rounds of EC, my weekly Paxitaxel (taxol) chemo rounds starts this Thur.
Anyone else's starting this month too?
Hoping symptoms are less than EC.
Take care everyone
I should have added to leave the postcode field empty for a full list of virtual ones!
@SB165 Good for you being brave to get a proper job done! Sadly I look like Gollom now but keeping my head covered all the time so I don’t scare myself!! I keep forcing myself to think that this is a new dawn for hair & it might grow back better after all this is over!!
@SinduKumar The link to the workshop is: https://lookgoodfeelbetter.co.uk/workshops/?gclid=EAIaIQobChMIxLuWkN6q-wIVwQaLCh1V_gddEAAYASACEgLbBf... you can attend in person or online. My BCN told me about them - I am attending 2 next week so will report back - I hope the link works when I post but if not just look up Lookgoodfeelbetter & you should find it.
Take care everyone
What are these workshops and how do we sign up for them please? X
@Meanegg Thank you! I did actually brave it on Thursday and went and got my hair cut to number 2! Was bit teary at the start but over it now, big milestone done. I went to a posh hair salon which had a separate room for those that are dealing with hair loss due to medical reasons, as they also do wigs etc
2nd chemo is on Thursday so thats the next thing now.
Will let you guys know what the workshop is like - im going to register for some of the others too.
@Meanegg my paxitaxel is weekly and hence 9 rounds. My dosage will be lesser than yours and the frequency is different.
P.s.: Binge watching 'Anne with E'. Only 3 seasons though.
During Cancer journey, I think TV offers good escapism:)
Forgot to add an absolutely binging on the crown - loving it!! I’m not from UK but my husband is British which is how I ended up here - I just love all this monarchy business - even though I’ve been here for years, it still fascinates me 😉
@SinduKumar That’s great that you are finishing EC after 3 rounds. I know we are all on different regimes but can’t help wondering why - I suppose no one’s cancer presents exactly the same way so treatment is tailored accordingly. I have one more EC in two weeks & then move onto Paclitaxel for 4 rounds (every 2 weeks) I really hope I can stick to this schedule and am looking at an end date in Jan all going well! great news that pac seems a bit easier than EC so really hope that is the case for us!
saying that though, I have been reasonably lucky (so far) with EC; just mild nausea in the mornings & not feeling my normal self but hard to put my finger on exactly why! Mentally I seem ok - not sure my husband would agree though 😉 I wrote down all my passwords & PIN numbers (not very security conscious!) before I started as was afraid I’d forget everything with brain fog but so far so good!
@Jussie I haven’t found the symptoms getting worse with each cycle but some new ones have cropped up with each one. I had mouth ulcers after first but not after second ( got difflam mouthwash for this). I I developed a dry scaly patch in my face after second round - Aquaphor was great for that. I also got dry eyes with second round - I use hypromellose eye drops which helped a lot.
I had achy bones with the injections after the first round but not so much after the second one which was great. I’m hoping I don’t experience any worsening of symptoms over next few days though as still early days in this 3rd round!
It’s great to share experiences on this forum - I am so glad I found it! Wish we all didn’t have to be here though but hopefully this time next year this whole experience will be fast becoming a distant memory!!
Take care everyone
I had my second EC yesterday and also treated myself to a bit of a binge day watching S5 of the Crown - love it!
Also had a wobble this week as more than half my hair came out the night before and morning of my chemo. My hair got tangled up - had I known it would do this I would have cut it short. Ordered lots of head scarves and beanies and off to see a wig woman on Weds purely more for trying different styles - not sure if I’ll buy one!
I did do a long message a couple of weeks ago to all on this thread but it didn’t post 😔 I can’t seem to find out how to do a post!! Hence the sites t reply to you to see if this gets through. Hope the 3rd cycle isn’t too heavy - do you think they are getting harder?
@Meanegg what a coincidence. I too had my 3rd EC yesterday and coping OK so far. Chemo nurse told me this would be the last EC I will have in my life. Apparently there is a limit to how much EC can be given to a person especially when they are young as it can affect the heart.
Will move to taxol based weekly chemo from December which I am repeatedly told by nurses and oncologist would be easier.
More than physical challenges I find keeping up mentally exhausting. If I am not talking to friend, watching engaging TV, actively helping kids and other such activities that require me to focus, my brain keeps going to Cancer (acceptance about advanced cancer diagnosis or secondary etc.) Time does move slowly during active treatment...
Take care everyone x
Hi all, I hope everyone is doing as well as they can 🙂 I’ve just had 3rd EC yesterday so treating myself to a lazy day watching the crown on Netflix! @SB165 I haven’t signed up to the hair workshop yet. My hair started falling out after the 2nd EC treatment & I did find it very upsetting to see the clumps come out in the shower.
I cut it off myself as I knew I would be too upset to go to the hairdresser - I normally love going to hairdresser to have my high lights & colour done so knew it would make me really depressed to have it all cut off there!
I wouldn’t necessarily recommend a home jobby though as I now look a total mess but got some really comfy hats that I wear constantly to cover it up & have a wig on order that should hopefully come soon.
Other than the hair debacle I’m finding the side effects of EC not too bad so far & hope it will be the same for you - good luck with the rest of your treatment.
I hope you find the workshop is useful - I will definitely sign up for that one once my hair starts to grow back a bit!
ive signed up to the one regarding hair loss etc, its on Tuesday. I had my first chemo 2 weeks ago today and my hair has started falling out 3 days ago. Can’t decide when to go and have all my hair taken off. Scalp has started to feel sore too. Im prepared with hats etc…..