I’m on the steroid buzz today and actually slept really well last night unlike the 1st round when I was wide awake from 2-6am!! My nurse told me yesterday they’ve given me a 5 day tablet for nausea and said the ones I go home with are more of a back up for if I feel any nausea creep in. The ones they sent me home with made me feel abit spaced out and TMI but day 2-5 of the last cycle I was really constipated which I think was a mix of the extra sickness tablets and much less movement, I was moving less because I felt spaced out but think the constipation was making me feel nauseous so I felt like I needed to take more anti sickness so I’m trying to get out of that horrible cycle and so far today I don’t feel spacey and no constipation or nausea, think the movement and lots of water helped plus no extra anti sickness tablets!!
Oh that is so understandable, especially with previous health anxiety no doubt creeping in but today is a new day! Maybe get outside for a little bit I know how much you love your walking I never asked about mine but I’m going to ask next time.
I think we all need to remember too no matter how much we’re exercising and being healthy, the crap were having pumped through our bodies is strong stuff and for a good reason to kill any pesky cells! It’s not a reflection on your effort, health or strength! Look at what happened to @sam1204 when her neutrophils dropped and she’s a bloody powerhouse!! Have you tried the cocoa in the smoothies like Sam recommended?
Hope your meeting goes well and remember “this too shall pass” xx
Oh wow let’s hope the extra time helped freeze those follicles even more!!
Have you kept notes from your 1st round? I’ve been keeping notes and have so far felt pretty much the same (I know I’m only 2 days in haha) but better, less tired!/more energy and less spaced out which I put down to the extra anti sickness I was taking so I’m going to hold off one them as much as I can as my Nurse said yesterday they give me a 5 day anti sickness prior to chemo so to just use the extras if needed.
I only started losing it on day 21 so on Monday and I had a little meltdown, freaked out, said I wasn’t doing this anymore but it’s slowed down and I still have a full he’d of hair just slightly thinner but sun-noticeable to anybody else thankfully! Hope yours clings on for you!
Lots of love to you, sounds like you’re doing great! Xxxx
Yes I thought keeping notes might be a good idea too. I can burn them when I’m done with all of this ha ha !
It’s a twisting journey isn’t it. My hot flushes and night sweats are a bit off the charts but I’ll take it if it means I get to the other side of this.
Nice to meet you @clarabelle1 it’s not the club we wanted to be part of is it but the forum here makes things a little more manageable. In it together
Thank you @katie91, this will pass! I have kept up with my 1 mile a day walking but yesterday I think I did just under. I’ll get back to it today I really struggle with the cocoa flavour so I didnt manage to include it as much as I could have. I’ll change that this time. Going to look at making some cocoa protein bars
Hi @clarabelle1 and welcome. I started in February but I dot around between that thread and this one. It’s all useful stuff for sure. I find it reassuring reading of others experiences and what’s worked and hasn’t. Better than surfing the net !
Yes I’m officially under WP but have my treatment at Chesterfield Royal as it’s nearer to me. I dread going to WP as the parking is so awful and they always seem to be running late - though having said that when I had to go in as an “emergency “ case one Saturday teatime (turned out to be a bad reaction to bisphosphonates infusion which I’ve now ditched) they were amazing!
Hope things are going ok for you (as much as they can be), and keep on reading and posting
@foxgem sorry you’ve not been so good. But it’s allowed! It’s bloody tough and this stuff is doing harm to our good cells as well as killing bad ones. I’ve eased off my “powerhouse” (thanks @katie91) regime for a couple of days as been feeling more tired than I’d expect. Off for blood test shortly .
I do agree about the cocoa taste, it’s never been my favourite either, I just make myself take it like it’s medicine. But brownies or protein bars sounds good. I also wondered about chocolate mousse but made with silken tofu instead of raw egg (obviously dodgy). Need to search up a recipe.
Not walking to shops, the weather turned into a ball of cold wet sleet. Instead lovely DH has offered to drive me there after work so l can walk round said shop. I have put together a shopping list that seems to feature buying filled pasta, creamy sauce to pour over veg and meat to convince my taste buds to eat and more soup chowder as that has been the only thing that tasted okay.
Instead of walking I have been doing some of the nhs stretching excercises in short groups for a few minutes at a time. The tiredness is crazy so l will speak with oncologist about how best to manage this going forward. Do a bit then l need either a good sit down or lie down for 45 mins to recover. Not at all used to being like this. Normally l would power through but instinct tells me that would be stupid to try.
@wibbles I think the instinct to just let the fatigue roll and rest is a good one. I agree it does feel odd, but pushing through definitely seems at odds with the circumstances. The chemo nurse was giving me a bit of a (kind and friendly) lecture about this today! But do definitely bring up with oncology, they told me a bit of extra sleepiness is fine but if it’s taking over your life then they’ve got things they can do.
Am just finishing up with a flush after my second EC, and waiting for my lift. Ready for round two side effects rollercoaster! And I think I jinxed it with my worries about hair loss this morning, have had my first real shed today. Very disconcerting. Those further along, did you find it was better to just get in the shower and comb it out to see what’s what or leave be? I’m dropping hair all over the house!
@felineoptimist regarding the hair, in my experience it doesn’t matter what you do, it will just keep coming out. In the hairbrush, in the shower, on your pillow, on your shoulders….I was sick of it being all over the house (my hoover was full of it!) which is why I shaved it. Now i just find 1cm long bits on cushions and on my clothes . I’d do whatever is easiest in terms of it not filling your house - which could be just brushing it for hours !
Hey @felineoptimist I had a BIG shed on day 21 after 1st EC, I was sure I’d have huge bald patches but I had my 2nd EC yesterday and today the shedding seems slightly less severe! It was literally coming out in handfuls but I still have a full head of hair surprisingly with no bald patches. I was petrified to wash the conditioner out today from cold capping but just a few stragglers came out. Going to give it a very gentle brush tonight x
Thanks @katie91 and @sam1204 - I had hoped I might make it a week or so more and get my hairdresser to do the short crop for me but I’ll see how far I get. Maybe I could get in to see him sooner…! I have quite short curly hair already so don’t brush it generally, hence being a bit perplexed about next step. Will have a go tomorrow in the shower with a comb and assess the damage.
Ladies, hope you’re all doing well. Few themes on here I thought I’d add my 2 pence on;
Hair loss- after the big shed which lasted around 2/3 days I have consistently kept losing hair very time I brush, around a palm sized full. So it didn’t look that bad initially after the shed, but now I have patches. I’ve chosen not to cut or shave mine off as I can get away with tying it up and it not looking too bad, and tying it up stops seeing lots of hair everywhere all the time! I brush it once a day and wash it once weekly, I always brush before and after the shower (rather than in the shower).
Fatigue/movement/exercise - this is such a tough one and so personal to everyone based on how you feel, your general fitness levels etc. I am wiped on day 1 so tend to just rest, aim for a walk on day 2, days 3 to 5 really depends on my symptoms on the day but will try get out for a walk and do stretching, plus doing more house chores to keep me moving, and then day 6 onwards I’ve found I can do a workout/walk combo. Unless it’s the weekend and my kids are home, then I can’t do anything for myself .
Food - I’m loving some overnight oats for breakfast at the moment, using oat milk, chia seeds, cacao protein powder, flaxseeds and Greek yoghurt in the overnight mix, then topping with berries and some honey and nuts before eating. Will try keep my meals balanced nd healthy but it’s really downhill at snack time!
Hey, just seen you are triple negative too. Doesn’t seem to be that many of us. I had my 1st chemo last fri (the big one with immunotherapy as well) 2moz I’m due a top up then top up again next fri. Im having that for 4 cycles. How are you managing? Had horrible groin/pelvic area pain, im having filgrastin injections for 3 days after big chemo, not sure if have to have it after top up ones yet. Steroids have kept me from sleeping properly but had better night last night n done few hours in a row twice. Always here to chat if need too. Gotta stick together thru this! X
Re hair - @sam1204 i think you’re right. If it is going to shed it will. Apparently the shed with EC is 14-21 days post-each treatment. So despite being 2 in, I think the loss I’ve had this week probably still relates to cycle 1 (notwithstanding cold capping). I have lost so much the last few days. Will need to think how to manage it because I’ve never really been someone to invest time or effort in my hair and luckily it has always looked fine! I am enjoying no armpit hair growth, and similar to you all in the pubic region
Food - feeling inspired by you @foxgem and @sam1204 and trying to eat as well as possible. My husband has made a homemade granola and it incorporates nuts - I don’t like them so it is a way to get them in me. Making lots of crispy kale as meal sides too. Developing a taste for 85% green and blacks chocolate.
Toothpaste - I have continued using the duraphit high fluoride stuff which my dentist sells. I have a dodgy crown so was nervous about needing work during chemo and I really believe this toothpaste has helped me manage the tooth. I haven’t it past my oncologist but did research it and it seemed recommended during chemo generally.
Chemical taste - really experienced this after round two for a couple of days. I got some belvoir lemon and lime cordial. They’re pricey but the glass bottle cordials are generally better in terms of ingredients (though I am partial to the full of rubbish Robinsons orange and mango one!)
@katie91 I am doing ok thanks second cycle otherwise. Falling asleep at 9.30pm every night but the kids wake me at 6am so that is probably good.
Finally worked out before tea last night that the horrible rolling stomach thing for the past three days is NOT anxiety but chemo nausea (doh) actually started to take the antiemetic they gave me to take home. Last night I actually managed to eat a small amount of hubbys home made shepherds pie with cheesy mash and some peas and sweetcorn. Thanks for the tip it’s okay to add sugar based cordials to water to make it more palatable. I know I have to avoid the ones containing aspartame as it’s something else my body seriously dislikes. The pomegranate and elderflower one actually tastes vaguely of pomegranate. last night I could actually sleep as in real sleep after using the Virtual Forest England guided meditation and a stomach that did not feel like a churning abyss.
Ùsed the antiemetic drug this morning as spotted the early start of nausea I even managed to eat two slices of best of both toast with marmite this morning once Ìt kicked in. Will keep tabs as it never dawned on me the reason I could not face food was not just down to taste buds being shot down but a presentation of nausea post chemo I have not experienced before.
MY skin tends to be reactive so I do not wear any make up etc normally. I have switched to using cetraban and sanex zero as my skin feels so very dry and I am slathering Nurse M caring skin fix over my nails. (Dd who is a burns care nurse recommended it) The plain honey and beeswax lip balm is proving to be worth the cost as it’s been the only thing I have tried that has made my lips feel less weird.
Going to try to eat little and often and use the regular appearance of the drinks and snacks trolley on the chemo ward as a rough guide as to when. TBH it’s been tough to accept that for now if I do a bit I need a good rest after so I am rolling with it in the hope that next week will be less wiped out.
FOr others who get hit by post chemo serious aches and pains in their joints, ask the nurses to show you how to position and support your joints on the initial pain days. My DD came round and showed me how to and TBH I was surprised as it can made it a little easier.
Homemade granola sounds like a great idea! Another one my friend uses with her kids is to blitz the nuts into a powder then add them into porridge or sauces etc.
If anyone is looking for a nice squash without rubbish it Rocks is really good, again pricey but tastes really nice (I have the orange and lemon flavours) .
@wibbles glad you figured it out with the anti-sickness medicines!! Will make a world of difference x
I’m day 3 after 2nd EC, yesterday I felt great and made it for a little gym session and then out to a playgroup, managed another little playgroup this morning and now I’m so tired no nausea though so far and haven’t needed any extra anti sickness tabs today!
I’ve noticed my hair looking much thinner today, although I still have a full head of hair it’s just so thin compared to what it was after the big shed on day 21 after 1st EC. I know it’s temporary and it will grow back but it’s still really rubbish isn’t it!! I’m on abit of a downer today, about my hair wondering how I’m going to cling on to enough if it already seems to thin at round 2! I have 1 more EC and then 3 docetaxel, hoping the docetaxel is gentler on my hair although I’ve heard lots of mixed reviews!
Hoping the shedding slows down, although I do have lots of hair pieces/clips/wigs on standby!!
Love to you all on this crazy journey we all find ourselves on!
I never asked about mine but I’m going to ask next time.
but it’s slowed down and I still have a full he’d of hair just slightly thinner but sun-noticeable to anybody else thankfully! Hope yours clings on for you!
I really struggle with the cocoa flavour so I didnt manage to include it as much as I could have. I’ll change that this time. Going to look at making some cocoa protein bars
) regime for a couple of days as been feeling more tired than I’d expect. Off for blood test shortly 
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. I’d do whatever is easiest in terms of it not filling your house - which could be just brushing it for hours 
!
x
I know it’s temporary and it will grow back but it’s still really rubbish isn’t it!! I’m on abit of a downer today, about my hair wondering how I’m going to cling on to enough if it already seems to thin at round 2! I have 1 more EC and then 3 docetaxel, hoping the docetaxel is gentler on my hair although I’ve heard lots of mixed reviews!