May 2025 chemo starters

Hi @sim2 yep I think the fatigue, once the steroids wear off, seems to be worse each time. Some days I can hardly stay awake :yawning_face:
I’m trying to get out for a walk but not as regularly as before. I’ve been doing some jigsaws as they’re easy to pick up and leave depending on how you feel and a friend has just sent me a Lego orchid to build to pass the time!! I’m really struggling to read anything though as can’t really concentrate. As you say it’s quite frustrating to be bored but lacking the energy to do something about it. Take care

3 Likes

Lego Orchid sounds fun :slight_smile:

My husband told me to stop spending money, so I’m having a spend free week and Piling my purchases for next week :smiley: I think a Hammock and a parasol is in order so I can then sleep outside haha.

3 Likes

Hi there I’m 8 weeks into weekly pac after 3 ecs. EC is def harder but pax is v tiring. As soon as I start to get my energy back on the Monday then it’s time for the next one on the Tuesday so it’s relentless, and the fatigue builds week on week. So try and rest when you can. On EC i was wiped out for 10 days but on weekly I still can get dressed. Water the garden etc and go shopping in the morning but in the afternoon I need to go to bed x

3 Likes

Hello everyone I hope you are all managing the best you can despite the fact we have yet another heatwave :hot_face: and are suffering the accumulated effects of chemo. Although in some ways it’s nice to not have any hair to worry about! I have my fifth round of chemo and first session of EC on Monday. I was pretty wiped out last weekend by final round of paclitaxel so looking forward to what EC brings!! Thinking of you all and sending hugs :heart:

3 Likes

@susan501 glad you are doing well and hope all goes well on Monday.

So I had my 5th session yesterday but I am the other way around, having finished EC and started Paclitaxel. It was a bit of nightmare day, they pumped 5 minutes of steroids in, which should have taken 15 minutes. They then had to repeatedly ask if I had an itchy bum :joy:. I felt really spaced out with the piriton but that thankfully wore off with time. I think I should have had this during labour as I really wouldn’t have cared what was going on :joy:. After being pumped with drugs and sitting for ages wondering what was going on, I then discovered that they were waiting for my chemo as it hadn’t been ordered :grimacing:. Later on, I also heard one of the nurses say that someone in the row behind was sitting there with someone else’s chemo :flushed:. I eventually got hooked up but as it was late, I didn’t get home until after 6pm (arrived at 9.30am). They have given me injections to home like I had with EC but my oncologist said that I didn’t need these. I think my confidence waned yesterday. Now waiting to see what lovely side effects present themselves over the next few weeks. I hope everyone else is doing ok!

2 Likes

I’m having weekly pax, it’s much easier than EC but it is tiring as it’s relentless. You’re ticking them off and doing well. I’ve got 4 to go! Next I’m one on Tuesday. 23 days of chemo left for me….can’t come soon enough! Hair is growing back on weekly though x

3 Likes

What a long day! Hopefully it’ll be much quicker next time, I go in at 9 and out just before 12 x

1 Like

Oh @sunflower9 what an awful day you had. I hope you’re doing okay now and the side effects are manageable. At least if you don’t need to do the injections it may help reduce the side effects. I agree that every time there is a hiccup in your treatment it does hit your confidence as you add it to the list of things ā€œthat might happen next timeā€. It’s such a slog but one more crossed off the list for you ….

2 Likes

Good morning all, here I am again after another really broken sleep. I went to bed around 10.30 and woke up at 1am assuming it was much later. This is a regular occurrence and getting so frustrated with it. I got Nytol but it doesn’t make much difference. I was always an early riser before this but this is so much more. Does anyone have any tips? Luckily I don’t feel too tired through the day, I’d just love a sleep where I only wake up a couple of times instead of about 10 - but in the grand scheme of things I should be grateful this is my biggest annoyance.

I’ve done four rounds of EC and was generally okay but always ill the day after first Filgrastim injection. I did see someone say to take an anti histamine and have a bath before bed so will try that next week. I have the first, of four fortnightly, paclitaxel on Tuesday - I’m assuming I’ll still get the injections to take home?

I’ve persevered with the cold cap and I got my wig and was pleased how much like my style it was. I’ve not had to use it yet as still have enough hair to tie back and I have one of those human hair scrunchies to use. As soon as I can’t do that anymore I’ll remove/cut really short what’s left and start with wig.

I used to go to the gym and walk loads on a weekly basis but since the start of the year, when I had two operations, I’ve done yoga once and as much as I try to walk like before I’m finding I get sore feet and much easier to get blisters on heels. Also I’m a sweaty betty at the gym so the whole washing hair thing stops me too. I’ve put on over a stone since last year and that’s getting me down too, but as nurses say it’s better to put on the weight than lose it, but doesn’t help with how I feel mentally :pensive: The week of chemo I just have no motivation to do anything and have to push myself to get out for a walk - however easier if someone else goes with me. Thankfully the week before chemo I feel almost normal and I’ve spent these past couple of days avoiding the sun and had a huge clean and tidy up of flat :muscle:t3:

It’s a very surreal time just now and while I’m focussing on one thing at a time, I know I still have a long way to go with more surgery and radiotherapy following.

On a positive note, I am so grateful for family, friends and colleagues who have been so supportive and for this group reminding me I’m not alone and helping me through this time :heart:.

7 Likes

Oh dear that would make you loose any confidence. I hope you are feeling okay now and the next round will be better.

Welcome to the club ā€˜no sleep’ :smiley:
Tbh on those nights I wake up, have a cup of some hot infusion ( like camomile, or raspberry or hot chocolate), and transport myself to the sofa downstairs. And then go scrolling for information on various random things that my mind decides are important at that time. I’ve recently learned how to make cuttings and root various plants, or watch cat videos. Cat videos are the best for falling asleep hahaha. Sometimes I give up on trying to sleep all together and go mop the kitchen floor before trying to sleep again.
There is no real help here as far as I’m concerned, but I find it easier to just go with it, rather than try fight the insomnia… it is temporary after all.

Hope your future treatments go well.

1 Like

I actually do need to sort out my plants so that is a good thing to get researching on sleepless nights :joy:

2 Likes

Hi everyone

My mum completed 3 EC treatments and started her first Docetaxel treatment last week. She got 3 more to go.

But this one is really hitting her than EC. Sofar she has been experiencing nausea feeling, had 1 - 2 vomits, diarrhoea which lasted almost more than 7 days, 1-2 lose bowel per day. Spoke with triage, they want to check her stool sample, Jsut to rule out any infection. Temperature wise all normal range.

So now mum is on bland diet, she just had some broth to drink. Diarrhoea has sort of improved but going to drop her stool sample tomorrow at the hospital

Anyone else experienced similar symptoms with Docetaxel and phesgo. Any tips on what to eat or what to avoid

HI everyone,

Reading everyone’s story, side fx etc I started on EC May 20 feeling blasted the first dose very high landed me in A&E twice. Didn’t have my 2nd until 4 weeks later and surprised that wearing a cold cap 14 days later most my hair came out. Worse side fx for me are palpitations, this weird feeling and breathlessness. The heat makes coping a lot harder I think.
7 days post cycle 3 I’m very jittery like I am on drugs. Don’t know if it’s the steroids…
Is anyone on EC getting this numb swollen feeling in their hands? After cycle 2 it started in my right hand , now in both they feel hot all the time. Holding ice helps a bit but worried I won’t feel my hands anymore soon and my right foot is getting numb too.
@sshini93 hard to say, I also have nausea but also mad heartburn and constip so I search for alkaline foods avoiding tomatoes and any food that can cause heartburn, I started eating fennel, slim green beans, fava beans… it works, not always but avery bit helps.

2 Likes

Had a lot of simmilar side effects when going through chemo.
Good news my sleep is still broken, but im 5 weeks past last paclitaxel and it got better, cant sleep due to surgery right now.
Sleep wise, before xancer never had issues, so some nights I would put youtube 8h long videos with sleep music that would help or read, and as much as I loved reading before chemo, during it woukd out me to sleep too.
Regarding the weight, I feel you. Diring chemo I out on at least half a stone, but as one of my surgeons said: ā€œdont forget, your body has a lot of cortisol in it and a lot of it is water tooā€, at my last chemo I think I was up about a stone in clothes, but had very heavy shoes on too so hard to say. But jsut before surgery, i was up about 4 pounds since pre chemo and post surgery in 4 pounds donw too as they cut out 2 pouds at least already. Energy in my case did come back after a little while. Nothing like pre chemo, but taking it easy and not feeli guilty actually made it better, as I wasnt worrying too much. And only reason Im say things, I could tell I run out energy first thing in the morning yesterday speaking to my therapist online. And we worked for 1.5 years now, and its first I haven’t run over out time, I was just done mentally and it made me physically drained in less than 50 minutes.
But I get it about not lining how you feel and look. Ihad a meltdown when facebook had than and now thing and I had a photo of myself 3 years ago… fuck it hurts to see how happy I was even with i jured arm.

1 Like

Hello everyone. At last some rain and cooler weather- hope it’s given everyone some relief and chance for some sleep. I moved on to my first round of EC last week and touch wood not feeling as bad as on paclitaxel although the fatigue just keeps ramping up. I was feeling a bit down with it all but then this morning I went to a Look Good Feel Better workshop - Skincare & Makeup Workshop - Look Good Feel Better : Look Good Feel Better - on skincare and make up and it was such fun and although none of us would have chosen to be there it really cheered us up being with others on our journey in person. It was so good to swap stories and share tips. Everything from travel insurance to dealing with no eyelashes. I would highly recommend. Take care.

3 Likes

Thank you for sharing :slight_smile:

@susan501 I am so glad that your first EC went well and that you have had minimal side effects :blush:.

I am due my second Paclitaxel on Friday and I too have found it so far much more manageable than EC. My muscles and joints did ache for a few days and my temperature hovered around 37.5 on day 4 so emergency team wanted me to submit some blood tests which thankfully came back ok. I have booked a LooK Good, Feel Better session for next week. Since round 4, I find that I can feel a bit low at times so I’m hoping that this will pick me up a bit. I hope everyone else is doing ok?

1 Like

Anyone suffering with thrush on docetaxel? The first round I caught an infection and thrush went into hospital.
The 2nd round i was prescribed nystatin, which makes me gag. The hospital will not prescribe antibiotics as they say this reacts with the chemo although they gave me antibiotics in the hospital. Is this true? The mouth washes don’t seem to be getting rid of it. Thanks

2 Likes

I had thrush and they gave me the nystatin. I haven’t heard that antibiotics interfere with chemo. But I maybe wrong. Hope it clears up soon x