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May 2022 chemo starters

269 REPLIES 269
Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

❤️Coddfish ❤️ good advice always ring your rapid response number for anything no matter how trivial you might think it is, being on chemo is not like normal you need to always check with your teams anything, just to make sure it doesn’t need antibiotics ❤️ it helps them help get you safely through, sorry you are still in casa nhs but glad you are being looked after by your team ❤️💕💕Shi xx

Coddfish
Member

Re: May 2022 chemo starters

I am still in hospital but they plan to move me onto oral antibiotics tonight and then hopefully discharge me tomorrow unless things worsen overnight. I then have to get a blood test on Monday morning and then meet with the oncology team to decide if I am fit enough to try again on Wednesday and what if anything to do differently. The oncology registrar who visited me this afternoon said that this reaction does happen with some people when they switch to a Taxane. The explanation seems to be that the chemo affects the motility of the waste moving through my system, and the muscle tone of it, so that some got blocked in a pocket and became infected. So within 48 hours of the infusion I had enormous pain and a rapidly developing infection I didn’t know about, that hasn’t manifested through anything other than my blood counts. Amazing this can all develop so quickly.  Serious abdominal pain wasn’t on the ‘red card’ list of things to call up about but I won’t sit on it if it happens again and I recommend the same to anyone else having a Taxane!

Zanna38
Member

Re: May 2022 chemo starters

Hi @Coddfish I'm so sorry to hear you've had such a rough time. I was admitted because of constipation after my mastectomy so I know how truly awful it is. It sounds like you're being well looked after -- jealous of the room with a view after my inpatient stays on wards with no windows! -- but nonetheless it sucks to be in hospital. I hope the antibiotics do their thing quickly and you recover soon 💌

Caz1960
Member

Re: May 2022 chemo starters

I’m getting off very lightly on weekly paclitaxel but had my first zoledronic acid infusion with it two days ago. I went to work yesterday feeling fine but got hit with hideous aching and shivering about mid morning. Temp of 37.8 - my white cells were over 40000 because of filgrastim so I didn’t worry about it. Just went to bed and took paracetamol. Feel ok again now. Hint to anyone having it soon - make sure you cab have a day of two off work afterwards!

Coddfish
Member

Re: May 2022 chemo starters

Unfortunately the early problems I had following my first Paclitaxel escalated somewhat and I am now having my first experience of being an inpatient on the onco ward in QAH Portsmouth. Within 48 hours I had excruciating abdominal pain, which turns out to be chemo induced diverticulitis. This is when constipated stool gets stuck, forms a pocket, and then becomes infected. Despite probably the worst pain of my life on Friday night, I didn’t contact the onco line until a couple of days of Lactulose hadn’t done much to resolve either the constipation or the pain. By then my infection markers were way up so I am being treated every few hours with IV antibiotics. I have a private room with a lovely view down Portsdown hill, over the city of Portsmouth and out into the Solent so it isn’t all bad. The early morning and sunset views are quite spectacular. I am not going to be allowed home until my infection markers are down, plus my neutrophils need to remain ok, which they have done so far. The possible bonus is I get to skip one of the 12 Paclitaxel infusions.

Hope everyone else is doing better than I am. 

Soggs52
Member

Re: May 2022 chemo starters

Hi all

Hope you're all bearing up ok and those who have had some struggles recently are doing better.

I'm feeling a lot better than I was but have round 5 tomorrow. It does mean after this I only have one more treatment to go so that sounds nice but I know I have to go through the horrible 2 weeks of each treatment first - but what seemed like it was going to be hard to get through back in May when I had my first chemo does feel a lot more manageable - today at least!

I've found the side effects have got worse/lasted longer with each round. The worst bit for me this time was the sore throat/difficulty swallowing which was followed by pretty awful diarrhoea - much worse than it's been previously. I've cooked up a big batch of chicken broth and put it in the freezer so I can have something nutritious to eat in the week when I can't eat solid food so feel a bit better prepared for that at least.

@woodfire27 brilliant news that you're really at your final treatment. I think celebrate in the way that works best for you. I'm sure we'll all have mixed feelings about things at different stages. I'll be mighty glad to finish chemo but still have surgery, radiotherapy, and then herceptin injections until next May so might not be feeling 100% for a little while! I've been doing a lot of reading about hormone treatment and am going to see if I can have tamoxifen rather than letrozole when I get to that point as I would like to use vaginal oestrogen and it doesn't seem possible with letrozole. Though to be honest I'd rather miss out the hormone treatment full stop! 

@Coddfish sorry to hear paclitaxel has been so hard for you - hope it's just the first treatment and you find it easier from now on.

@Zanna38 I have also had chest pains and a fast heart rate when using filgrastim - I'm sure it's that as it gets better once I've finished the injections. My oncologist has agreed that I can cut down from 7 injections to 5 on this round as I hate it so much! I also get really bloated and have pains in my ribs and lower back which also go away when the injections stop so that should make it a little easier this time.

Hope everyone else is doing ok. We're getting there slowly but surely xxx

 

Zanna38
Member

Re: May 2022 chemo starters

Hi @Coddfish  - I'm sorry that pac has been rough on you so far. I'm day 5 of my second paclitaxel (every fortnight). My first one was worse in terms of aches and pains - this one has been easier so far, though the rank taste has remained. My oncologist also said that aches are often worse on the first one. I really hope it gets better for you. 

@woodfire27 can't believe you're so close to finishing - that's wonderful. You definitely deserve to celebrate! I'm a few weeks behind you and not sure yet how I'll feel about the end - focusing on getting through the final two treatments. 

woodfire27
Member

Re: May 2022 chemo starters

Hi all

Hope everyone is doing well,  I’ve been reading all the messages and echo what Zanna says and hope everyone is ok. 

I had my third fortnightly paciltaxel on Monday, got to say I’m finding it harder than EC, although I don’t get the nausea/fatigue I am experiencing bone pain and aching hands and feet (suspect neuropathy is possibly starting), so my final dose might need to be reduced.  My eyebrows and eyelashes have also given up on me now…. but im so relieved I only have one more infusion to go!!!!!!  my friends are making plans to visit & celebrate the end of chemo,  I’ll be happy just to go for a meal rather than a big party as I’m not sure I’m up for all the fuss right now (especially as I don’t really look like myself).   Anyone else planning on celebrating??? Feels a bit weird as I still have radiotherapy to go. 

Hope you all have a good weekend xx 

Coddfish
Member

Re: May 2022 chemo starters

Just wondering how everyone is doing? I have started Paclitaxel now, as I think others have. Not enjoying it so far - day 3 has been fairly rough with constipation, aching, loss of taste. I can’t even sit comfortably on a chair as everywhere hurts. So disappointing when I had a fairly easy time on EC. How are others feeling? 

Zanna38
Member

Re: May 2022 chemo starters

Hi everyone

Happy weekend - I hope you're all managing to enjoy some sunshine during these tough chemo times. It's been a while since I wrote a proper update - I've been following all your news and cheering you on, have just had my head down and trying to get through one chemo day at a time. 

@Soggs52 I'm sorry your throat is sore! I had a bad throat all through EC and was prescribed gelclair. It seemed to work a bit! I mostly ate icecream during my first two EC cycles as it was all I could get down. I hope it eases up for you soon.

@ddlevs like others, I'm really shocked by your experience at your hospital. It should not be like that. I think the norm is to see the oncologist before every two or three weekly treatment, and every other week before weekly treatment. A badly disorganised chemo ward is unacceptable. I hope you've had a better experience since but I absolutely would escalate this and/or demand to move treatment centre if you're not happy. It's a rough enough experience with the best care and you deserve to be looked after properly. 

@Coddfish if I have followed the thread correctly I think you have finished EC4 now? I hope that it feels good to wave goodbye to the red devil and you're ready to move to the paclitaxel. 

@Lops I'm sorry the pac hasn't been as easy as you hoped so far. But that's excellent news about your tumour shrinking - the chemo is killing it! I'm having my chemo post-surgery so it feels a bit weird not knowing if all this is doing any good or not...

@Caz1960 hope you're hanging in there. See below for more on my experience with filagrastrim 

@crazycat any news back from the lung scan? Sending lots of positive vibes your way and I hope EC continues to be better than the first one. 

@SULLY98 I really hope round 4 went well for you.

 

As for me, I finished my last EC (hurray). I went to A&E with a high temperature about 10 days post-final infusion, turned out to be nothing but I caught covid in A&E which then delayed my first paclitaxel by a week. I was really frustrated as I'd withdrawn my toddler from nursery to avoid covid and other germs. Such is life. I was given antivirals and the covid itself was mild in the end. I then had my first of four fortnightly dose-dense paclitaxel nearly 2 weeks ago - on the 40C day.  It's definitely been better than EC so far, though I've struggled a little with some chest pains and a high heart rate. I *suspect* they are caused by filgastrim, as the timing aligns. Filgastrim also seems to elevate my temperature (hence going to A&E and catching covid... grrr). But without it my WBCs and neutrophils crash - so no way round it I guess! On a better note, I still have most (maybe 75%) of my hair, although it seems to be shedding a little faster on paclitaxel. My paclitaxel infusion is long (3.5 hours) so it's a long 5 hours in the cold cap which is a bit miserable. Otherwise, the end feels in sight now - 3 treatments to go - and I just want to get to there without any more A&E drama or treatment delays. 

Sending love to you all - we can get through this!

 

Soggs52
Member

Re: May 2022 chemo starters

@Lops sorry to hear you're finding paclitaxel harder than your previous treatment. I was hoping it would be easier for most people to cope with. Some of your symptoms sound similar to what I experience on TCHP - the T is docetaxel which is the same family so maybe that's why? The rancid taste is horrid isn't it? I hope you're doing ok. Good news on the tumour shrinking though - got everything crossed that it keeps disappearing.

@Shi Thank you for the advice. I had to go to the chemist yesterday so I picked up some gel for oral thrush but the pharmacist didn't seem to think it was anything to worry about. I get a sore throat for a few days every time with my treatment and it seems to be par for the course sadly. I'm so looking forward to being able to eat a normal meal again - should be in the next day or two.

@essjay19 thank you for the food suggestions! I had a go at some scrambled egg yesterday but I couldn't eat it sadly. Though in better news I managed to eat a piece of bread and butter (without the crusts) today so I'm getting there.

I will appreciate my food so much more when this is over!

@ddlevs I hope your chemo went better today.

Everyone else - I hope you're all doing ok x

Lops
Member

Re: May 2022 chemo starters

Had my second pax on Monday-and now I’m getting bone pain lower back and thighs . Got Naproxen from my gp to help. Rancid taste in mouth, dodgy stomach. I sailed through EC so I’m quite taken aback the pax seems to be knocking me sideways! 
also had a reaction to it so they had to stop and give me extra anti histamines, then restart it slower. So instead of being there 2 hours I was there nearly 5.
But in other news-I had an ultrasound last Friday to check on Tina tumour and it has gone from 5cm to 2.7, and the three lymph nodes that were affected they can’t find them only the marker clip! Hoping that Pac/Carbo obliterates the rest.

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

Soggs do check with your team it not start if thrush mouth you’ll need antibiotics ❤️ Just give them quick ring please to check all ok ❤️💕💕Shi xx

essjay19
Member

Re: May 2022 chemo starters

Hi folks

Hope you are all doing ok. I've been keeping up with all the messages but not posted for a while. I was on holiday last week, & came back to town on a 'day trip' for #2 paclitaxel. Of course it was the 40C day... I think I was the only cold person in the country: I had to ask for a blanket whilst I cold capped. Who knew cancer would have such silver linings.... I've subsequently ditched the cold cap. My daughter took a pic of my Friar Tuck hair - once I'd seen the true reality of what wasn't on my head - I knew it was time to stop.

@Coddfish you asked how Paclitaxel is going: I've done three of my 12 now, (after 4 dose dense cycles of EC). So far MUCH easier. I didn't have a terrible time on EC but, can operate fairly normally on Paclitaxel. Slightly dodgy stomach which comes and goes, and the aches on D3 (which fade by D5) are the only side effects thus far (oh and also fatigue/weird sleeping). Good luck for your start on 3 August.

@Caz1960 sorry to hear of your diagnosis. You asked about filstagram? I haven't had any since starting Paclitaxel. My bloods are monitored - so I do a test every week before being given the green light for that week's dose of Paclitaxel. So far not missed one, but only only number 3 and fully expecting to have at least a week when it doesn't go according to plan. Yes, I can imagine: strange being doctor turned patient - what a unique perspective. Might be a silly question - but have you come across Liz O'Riordan, breast surgeon who has had breast cancer twice?

@crazycat - as said by others: great news on our scan. What a relief. Dark days waiting for scan results. 

@ddlevs I'm so sorry to hear about your hospital experiences. How horrible. I'm glad that things may have improved a little bit for your next round. 

@Soggs52 - and sorry about your throat. ouch. I read somewhere that warm chicken soup/broth works well (but appreciate that's more soup). Scrambled egg any good? Jelly? Ice lollies?

Keep going ladies - this too shall pass...

Soggs52
Member

Re: May 2022 chemo starters

Hi everyone

Hope you're all doing ok.

Am really struggling with my throat this time round and wonder if anybody has any advice? I've been taking soluble paracetamol and the only things I seem to be able to eat are Weetabix soaked in milk, soup, yoghurt and fruit. It's very boring and I would appreciate any alternative suggestions!

Thanks

ddlevs
Member

Re: May 2022 chemo starters

@Shi  hi, yes for the second time in a month I have contacted pals. Lead nurse rang me today to discuss it all and hopeful things will improve, picc line going in tomorrow. Got a morning chemo appt on friday now instead of late afternoon so lead nurse is around seeing as it's my first Doc. I should have seen oncologist around my second cycle but it hasn't happened and this chemo is my 4th so being chased up. She apologised for my drugs not being there when I left last time. Fingers crossed I have a better experience this friday xx

Zanna38
Member

Re: May 2022 chemo starters

Hi @Caz1960 I had four cycles of EC and now doing four cycles of fortnightly paclitaxel. I’ve had weird reactions to filagrstrim since the start. It tends to elevate my temperature and, when I’ve had blood tests right after, it’s also sent my white cells and neutrophils sky high. That led the doctors to tell me to stop taking it (I was on five daily doses). But when I did stop I found my cells plummeted a couple days later. I’m still taking it but just three doses now. I now feel anxious whenever I take it because it elevates my temperature. Sounds like you’re pretty expert in all this (!) but my oncologist said the number and timing of doses isn’t an exact science so she’s just doing what she can to keep my cells high enough to keep going with chemo. Hope you manage to resolve your doses. 

MLT21
Member

Re: May 2022 chemo starters

Hi Caz1960

Like you I had EC and then moved to 12 x weekly Paclitaxel.  I was given Filgrastim on round 3 and white cells went sky high with serious bone pain in lower legs.  Onc decided to monitor my bloods rather than give me any more Filgrastim.  So far, bloods remain normal and I have three rounds to go……..  I’m happy 😁💪🏻.

All the best.

Caz1960
Member

Re: May 2022 chemo starters

Hello all, I’m late to this party, but also started chemo (dose-dense EC/paclitaxel at the start of May for early but high-risk breast cancer. Ironic as I work I’m a doctor who works in a breast clinic! Very odd getting it from both perspectives.

I’ve finished my EC, now having weekly paclitaxel - three down, nine to go. I’m curious to know what Filgrastim regime people are on for weekly paclitaxel? After my first cycle I had it in days 3-5, and my white cells had shot up to 30,000 by the next cycle we skipped it. I’m due to have it again this cycle - same dose, so I’m expecting the same thing to happen. Anyone else had this happen?

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

Ddlevs ❤️ Have you gone to your pals office at your trust about all this? You should. 💕💕Shi xx

Zanna38
Member

Re: May 2022 chemo starters

Hi @crazycat just coming on briefly to say I'm so relieved that your scan was clear. You've been in my thoughts a lot. I very much hope the lung x-ray is all clear too.  And I'm glad that EC#2 was easier for you - long may it last. 

Soggs52
Member

Re: May 2022 chemo starters

@crazycat great news about the bone scan being clear - that must be a big relief. Have got everything crossed that your lung X-ray comes back with good news. I'm glad your second EC went better after your first experience. Hope you have a nice time with your friends today x

Soggs52
Member

Re: May 2022 chemo starters

@ddlevs Wow - I'm so sorry you've had such a bad experience at your hospital. That sounds really unpleasant and scary. Is there any possibility that you could change to a different hospital?

My hospital is struggling with staff being off with Covid but they are still functioning efficiently. There is sometimes a bit of waiting around and medicines don't always turn up from the pharmacy immediately but it all gets sorted out and we're sent home with all the medicines we need to get us through to the next one. I have a meeting with an oncologist or oncology nurse and a blood test 2 days before every chemo session. They make adjustments to any medicines for the next round. The nurses on the chemo unit are very professional - they all double check the medicines being given to every patient and if someone has a reaction to a medicine (I had one on my second visit) they drop everything and treat that patient. And that's how it should be everywhere. I really hope you can get something sorted.

I am also eating a lot to try and counteract the nausea - I'll worry about losing weight again when it's over!

crazycat
Member

Re: May 2022 chemo starters

Oh my goodness @ddlevs this is terrible. Is there no cancer nurse you can talk to. What a crazy system the only thing we have to is knowledge of appts so can plan that day out. When do you take your premeds! When do you eat to prepare for day! I would be looking to change hospital if I’m honest. Not sure about everyone else but I see oncologist before each cycle (this can be on telephone if you wish) 

Ive had a crappy first cycle and hospital not brilliant but nothing like you have had to experience. I would be writing to the chief executive of the hospital to complain you have enough to deal with the chemo and cancer without worrying about how you will be cared for. 
i haven’t  posted for some time but have been reading all your messages you have been through so much. Thankfully my bone scan was clear so no bone mets. Still need to wait for lung X-ray but they were hopefully that was all infection. I had my second EC last Friday and so far have been great. Little sickness over the weekend but so far nothing else. They did reduce the dose of chemo to 75%. Still waiting for picc line as my Hickman line was infected like the rest of me. 
it’s the long days alone of waiting to see what this round may throw at me that’s me the hardest. Hoping to go out with friends today to get some fresh air nervous about being out but need the distraction. Today should have been my fourth EC if things had gone to plan!! 
keep going ladies as hard as it is we are doing well. 

ddlevs
Member

Re: May 2022 chemo starters

Hi all, I had my 3rd EC 2 weeks ago and start the dreaded Doc for the next 3 treatments. I'm scared to death of going to chemo next friday for a number of reasons. My hospital don't give appointment times which is supposed to stop you waiting around, they ring you when you can head to them, that system is rubbish as they forgot to ring me last time. It got to 3pm so I rang and I should have been there at 1pm. Got there 3.30 and in waiting room til 5pm as no chairs free, then another hour in chair doing nothing. Very short staffed, only 3 nurses for 12 chairs, collecting drugs, answering phone etc. Nearly got given same drug twice by error,  my meds I needed that night were left at pharmacy which was shut when I asked. My steroids to take before Doc hadn't even been ordered, a lady had an allergic reaction and no doctors available. I was at the unit 6 hours and was so tired. I haven't seen an oncologist once during treatment even though was told would see him after 2nd EC, been on waiting list for a picc for months, my arm is so painful from the drug damage from EC. I'm scared of having a reaction to first Doc and no staff to deal with it like the poor lady I saw struggling to breathe. I have spoken to pals at the hospital 2 days ago and am awaiting their response. Apart from all that I have been ok, bit tired and the headaches hit me again first 5 days. I cant stop eating, need to go on a serious diet after chemo. I'm not working either as too physically demanding, need something lighter after this. Hope you all coped with the heat, gosh tuesday was boiling here in the West Midlands, woken up this morning to rain! I was supposed to have an orthopedic appointment today for the arthritis in my hands but they cancelled for the 2nd time, now got to go end August, that's if I'm up to it as a week after my second Doc. My head still has a very fine covering but looks bald, been wearing baseball caps to protect it from the sun, not worn my wig once it feels uncomfortable and hot. Got some lovely bandanas from Shein and from Annabandana online too. 

Soggs52
Member

Re: May 2022 chemo starters

Hello everyone

I had round 4 of TCHP yesterday - only 2 more to go! Am feeling ok so far with my extra antinausea medication and have got extra lower dose steroids lined up for the next 2 weeks which the oncologist thought might help through the awful fatigue that hit me on the last round but I'm still undecided about whether to take them all as don't want to become dependent! 

Hope the end of term and school holidays goes well for you @woodfire27. How are you getting on with the paclitaxel? Is it easier to deal with?

Great news that you've had your last EC@Coddfish - it does feel like a milestone as you tick each treatment off but must feel good to have finished the harder sessions. I also HATE the Filgrastim injections. I was talking to a woman in the chemo unit yesterday who has managed to negotiate the number of injections she has to do each round of treatment down to 3 so I might try that with my next one (am on 7)! My next session is due on 10 August so hope we might coincide in the unit then.

@SULLY98 Good luck with your round 4. At least you'll be two thirds of the way through and only 2 more to get through. I know it's hard to cope with the side effects (I'm slightly in denial today as mine haven't kicked in yet this time) but we are getting there and in a few months we'll be out the other side. Hang in there! My hair sounds like yours - I've got bald patches and areas where it's still growing! I'm booked to do a Look Good Feel Better scalp care workshop in August to get some tips so that might be worth doing.

I think I suffer less from the constipation than you do - the oncologist told me that the antinausea meds often cause constipation so I'm looking out for it and going to make sure I treat it if/when it happens. For diarrhoea I just take Immodium as and when and try and make sure I stay hydrated. I read somewhere that coconut water is good for diarrhoea so I've bought some of that to try. 

Wishing everyone else good vibes and hope you're all doing ok xxx

 

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

❤️Constipation diorreah dance, senokot, anosol and baby bum wipes and Imodium and plenty of bread for runs always check not infection tho with your team if runs 👍 use sunny isle every time you wash head, rip onto scalp leave for hour then wash off with the red dot shampoo bar, just keep doing it it has worked for lots of us after chemo ❤️💕💕Shi xx

SULLY98
Member

Re: May 2022 chemo starters

Hi girls hope everyone is doing ok. I’m gearing up for round 4 of TCH on Monday. Feeling back to normal this week but thought of another 3 cycles of feeling 🤢 for 10days is a bummer.  Does anyone have any tips for dealing with the constipation/diarrhoea dance? @Shi just wondering about the sunny isle castor oil, I had read you talking about it on an older thread. My hair is growing back even though I still have 3 cycles left, I look like a fuzzy egg. It’s about an inch long on top and  sides but not so much on the back. I’ve ordered it and  just wondering how often you used it? I should be ok to use whilst still on treatment shouldn’t it as it’s an oil? I also have the Lush Nu shampoo bar. Just want to give my hair the best start whilst it’s starting to grow.

Coddfish
Member

Re: May 2022 chemo starters

That’s really good news @Soggs52  and wishing you all the best for chemo 4. I am currently on day 7 of EC4, it’s not been a lot of fun in the heat even though my side effects remain generally mild. Quite excited I only have 2 more of the awful Filgrastim injections to do, I hope I never see them again. 
Wishing everyone else all the best. For those of us moving onto Paclitaxel, do let us know how it’s going. My first is on 3rd Aug, weekly for 12 weeks. 

woodfire27
Member

Re: May 2022 chemo starters

Wow @Soggs52 that’s such good news about MRI scan - I’m sure your surgeon will give you pros & cons of both options.  Good luck for Chemo tomorrow,  I had my second paciltaxel yesterday and fortunately my unit was air conditioned - let’s hope most hospitals are. 

I’ve not been on here much myself as the end of term is always a manic time with my children.  Summer holidays are around the corner though 🙂 

Hope everyone is managing to keep cool and are feeling well/positive  xxx 

Soggs52
Member

Re: May 2022 chemo starters

Hello everyone

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

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

Am sending good vibes to you all xxx

Soggs52
Member

Re: May 2022 chemo starters

Hi everyone

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

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

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

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

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

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

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

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

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

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

lisa89
Member

Re: May 2022 chemo starters

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

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

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

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

Coddfish
Member

Re: May 2022 chemo starters

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

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

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

RC24
Member

Re: May 2022 chemo starters

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

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

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

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

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

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

Lots of love to you beautiful ladies xx

SULLY98
Member

Re: May 2022 chemo starters

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

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

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

redbean
Member

Re: May 2022 chemo starters

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

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

xoxo,

redbean

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

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

ddlevs
Member

Re: May 2022 chemo starters

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

Coddfish
Member

Re: May 2022 chemo starters

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

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

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

Shi
Community Champion
Community Champion

Re: May 2022 chemo starters

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

Loubie25
Member

Re: May 2022 chemo starters

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

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

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

ddlevs
Member

Re: May 2022 chemo starters

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

essjay19
Member

Re: May 2022 chemo starters

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

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

Onwards and upwards. 

Hope everyone is doing ok. Sending you all strength. 

Lops
Member

Re: May 2022 chemo starters

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

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

Zanna38
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