Well the curse of the steroids returns - it’s 6 am and I have not slept - I was given 16 mg of Dexamethasone with my paclitacel and piriton yesterday . At least I don’t have any follow up Dexamethasone as I did with the EC. I’ve only been given 2 days of filgrastim injections instead of 3 to follow up as my white cell counts were high.
My red blood cells are dropping each cycle - they are 110 now and I’ve been told they won’t take any action unless they fall below 90 - I’m on the spinach smoothie which I he oncologist and breast cancer nurse say won’t help but I feel they can’t harm.
Tomorrow my mum will take my daughter to see Santa (she doesn’t believe anymore but it’s fun), we had a lovely time this afternoon as she broke up from school for the holidays, she showed me her “67” dance as the elves got in in the act..
@emsd2025 What amazing news!!! I feel a bit teary and I’ve never even met you!!
@buggeringon@story1@bellbert@cathie2 and anyone else I’ve forgot to tag… I’m happy to report I’m feeling slightly better… enough to at least get dressed and leave the house yesterday, even if I needed a lie down when I got home! It felt weird not having chemo on a Friday for the first time in weeks! Hoping this trajectory continues so that Christmas week I have a chance to feel “normal”.
Anyone else feeling super nervous about this “super flu” situation- I’m generally pretty careful and mask up when it’s crowded and avoid too much indoor busyness but it would be just my luck to catch it! I had the flu jab in early Nov and both my girls had the flu jab as well so hoping that will support. Hubby has been sleeping in the spare room for the last two nights as his glands are up.
Hi @anim4l apparently you need to be consuming vitamin c rich food at same time as iron rich in order for body to utilise. Enter the mango high in both iron and vitamin c. Often prescribed in India for anaemia I believe.
The low HB is another reason you will be feeling knackered too btw.
Mine was at 110 last week too. So I’m stocked up on mangoes and juice!
Just take it easy, do a bit less than you feel able to and have plenty of rest in between. My oncologist told me at the start that recovery from the 3 months of chemo would take about six months. I’ve been busy for the past week telling people that I won’t be recovered for some time.
I’m also a bit worried about the flu. But am keeping out of busy places, wearing ffp2 masks if air sharing indoors and being extra hot on hand washing too. We’ve also been wiping down any food shopping that goes in the fridge and leaving the rest untouched for a few days - just in case anyone has sneezed over it instore. May be overkill, but it feels right to me.
The only other thing we’re doing is having regular meals with lots of garlic- it’s a potent anti viral, so helps the body defences.
Thanks so much @cridders and @bellbert yes hoping things will get easier now. Not happy about the super flu either , I’ve got masks inside, wondering about whether Xmas shopping is worth it or whether best to do it online. Really want to go into Bromley
@buggeringon a interesting your oncologist has said it will take you 6 months to recover from chemo. I’m having the strongest cycles my oncologist department offer which is 4 x fortnightly EC then 12x weekly paclitacel but have had no information about how long it will take my immune system to recover. I’m having surgery a month after chemo, then radiation then immunotherapy. I think I’ll be being careful for a while!
I’m also worrying about the super flu. I wear an N95 mask in shops and take hand sanitizer everywhere but I’m also worried about my family picking it up and passing it to me. My daughter is going by train tomorrow to a stadium to watch gladiators and I’ve asked that she wears an n95 mask
@anim4l I’m only on 12 weeks of paclitaxel. No EC. That was the estimate she gave at initial consult. Web search generally suggests 2 months per month of chemo - of course it’s all averages- some will recover more quickly, some longer.
I think it’s not just immune system, it’s energy levels, skin, hair, red blood cells etc. etc. all of which will recover at different paces I guess.
I’ve had my surgery already, but will be carrying on with immunotherapy and hormone therapy- no idea yet how the latter will affect me. Immunotherapy without chemo I think will be not too bad - I suspect fatigue in week one of three week cycle mainly, if current impact of double whammy weeks is anything to go by.
I just hope I get access to my blood results whilst I’m on immunotherapy so that I can manage infection risks in a well informed way. I know it’s supposed to impact our immune system, I just don’t know how much nor how often they’ll be taking bloods for monitoring. One for onc appt question list!
Hello lovelies. Long time no speak. I’ve been popping on and checking how your all doing but not been able to bring myself to type anything. I have a strange head that kept telling myself its been too long to catch up with you all aha. Happy to read about all the good news on tumour sizes. @emsd2025 glad to hear your mums doing well and that all who have had hospital visits are doing ok.
I hopefully have number 5 phesgo, docetaxel and carboplatin on Tuesday but I started getting ill on Friday so now I’m stressing that its going to be delayed, my daughter was ill last week with a high temp and cough. Also stressing about the actual chemo. Its been horrid and I really don’t want the last 2. (I am going to have them and I know there doing a good thing) the symptoms are lasting longer as they go on.
Ive lost over a stone since starting. My taste goes absolutely awful. Eating is a real struggle. Keep being told to force myself to eat which is easier said than done when everything makes me feel nauseous. All my safe foods are not longer safe. I look forward to enjoying eating again. This again is something thats lasting longer each time. Smells knock me sick, in particular my partners body spray.
I really struggle to walk for about 2 weeks. Even in the third week now I cant walk fast. Legs ache. Stairs are one at a time and slow. Tiredness is ramping up aswell.
Neuropathy in my fingers and toes. Toes felt like they were burning/frozen for a good week. Nails are going a little red and sore on my hands which make opening things hard and one of my big toe nails is hurting all the time now.
I can already taste what its going to be like next week -.-’
Managed to get into work on the third week of each round for a few days, half days. They have given me lots of sit down jobs which is fab. Kept me sane and busy. Get really tired tho now, so glad when the 4 hours are done.
There have been tears, keep telling people I’m fine when they ask (why do we do that when we know we’re not )
I have an appointment new years eve I think with my surgeon. And an echo on my heart after my last round of chemo for the phesgo injection.
Well iv let this sit for nearly 2 hours now before posting aha.
Love to you all and I’ll attempt to be a little more active. I’ve joined the fed up stage
@molly.m we’re on the same treatment plan but our bodies are reacting so differently, just proving the range of side effects possible with all these drugs!
Hopefully only 4 more weeks of chemo - in some ways I expect it’ll go really quickly but at other times feel like an eternity!
Interesting that you have an appointment with your surgeon on NYE. That’s one of my questions when I see the Oncologist on Monday. It’s the next unknown - next stage planning. When & what surgery and what treatment afterwards.
My weight has stayed pretty stable. Unfortunately due to perimenopause it’s about a stone more than my norm, and what I’d like it to be. No loss of appetite and no particular aversions, only a sensitive mouth during cycle 1.
I made a batch of brownies for friends yesterday and thought I’d be ok to have a few small pieces, even though it was suggested I try a few weeks of dairy free. I’ve not been completely avoiding products (mainly things like biscuits) that say they contain milk but have cut out full on milk, butter & cheese.
Well, last evening my tummy said a big no, accompanied by sweats and nausea - fortunately I wasn’t actually sick! Luckily the Imodium did the trick & I was able to get to sleep ok. It’s the follow on grumbling and rumbling that have woken me in the early hours. I’m feeling hungry but a little nervous to eat. I’ve sipping water and will try and get back to sleep. I will contemplate food in a few hours
Definitely no more brownies for me and a sensible few days of food. I think it’s also enough warning to me not to “just have a little cheese” or other indulgences at Christmas! I’ve eventually sourced some plant based Boursin cheese which has been recommended to me, so that can be my festive treat to keep me away from all the other tempting cheeses I expect to see at my sister’s on Christmas Day. I’ll also have to give my Mum’s pavlova a miss or whip myself up some coconut cream!
Remember @molly.m, and everyone else, the end (of this phase) is in sight!
@molly.m so sorry to hear you’ve had a rough ride - it’s exhausting when you have all the side effects happening all at once.
Your neuropathy and nails sound similar to mine and it is one of the things I find hardest… it’s like my hands won’t work and my arms get so tired and this gets me very frustrated. Sadly all my finger nails are very bruised, two have lifted and one of my big toenails has come completely off - so waiting for that to grow out feels like it’s going to be another reminder throughout the year.
@dizzy3 thanks for the Boursin tip… cheese is always my downfall and I’ve avoided it until now but too many of my Christmas treats require it…
Keep going ladies… we are smashing it even when we feel like we aren’t! Xxx
Its a funny one isnt it. Unfortunately ive had pretty much most of the side effects. And yes just that, its gone quick in a strange way but on my chemo weeks it feels like its lasted forever.
My tummy has been the same as yours too. I cant really eat any treats because the taste has changed, chocolate doesn’t taste right. Crisp are too potatoey. My dairy intake has come right down aswell. I have it with a hot chocolate most days but thats about it. Can’t have coffee, and I used to have at least 2 cups a day with biscuits. There’s nothing really obvious that sets my tummy off
Sorry about your tummy, hope you manage to eat ok today. I ended up being sick rounds 3 and 4. Luckily not this time tho. And been getting quite a few hot flashes aswell.
I haven’t seen/spoke to my oncologist since the start of September before chemo started. Got a phone appointment in January. Also had a phone appointment with the her2+ team about the injections after chemo. Will have 1 more after chemo, before surgery then depending on the results of that ill either stay on phesgo until 18 total injections (previous ones included) or start a new one for a total of 14. Xxx
Oh gosh sorry to hear about your nails and neuropathy too. Is it painful your big toe? Im not sure if thats what’s happening to mine with the pain, if its because its lifting ? I walk with a little hubble because it hurts. I couldn’t undo my daughters shoe laces the other day and that got to me.
And yes it is isnt it. Feels like there’s no end to them at the moment, and the more chemo we have the worse they get when people say to me only 2 more left, well you only have 2 more then its done…. Yes, its only 2 more, but its 2 more times of feeling awful for weeks while everyone around me is going about things normal and enjoying them selves and eating what they want, walking where they want. 2 more times of feeling sick, and aching and feeling awful. Days of being stuck on the couch. And 14 more of the bloomin self injections.
I feel awful complaining aswell because I’ve only had 6 3 week rounds while most of you are on weekly, 2 weekly rounds. Your all amazing xxxxx
I eventually got some more sleep and at 9:30 braved eating - marmite on toast (with dairy free spread). It went down ok & I’m feeling pretty normal. Now back in bed, with plenty of water, for some more rest.
@cridders I found the plant based Boursin in Sainsbury’s
@molly.m for a few years now I’ve had coconut milk in my hot chocolate as I like the taste. My favourite variety is Plenish as it has very few ingredients. The other dairy free milk I bought recently was KoKo which tastes very similar to cows milk if you’re not a fan of coconut. I was really enjoying milkshakes before I was told to avoid dairy. I’ll have to start making my own with dairy free milk.
So as well as the drugs affecting us differently all the different health authorities seem to do things differently. 2 days before each chemo session, as well as bloods, I have a face to face Oncology appointment with either the consultant or his registrar.
Tomorrow I need to ask more about when I will have the surgery appointment. The Oncologist has already said post surgery I’ll almost definitely have radiotherapy, possibly more chemo and I’ll be moved from Phesgo to just Herceptin, but I don’t know for how long.
@molly.m moan away, this is our safe space to do so. Most of my moans feel trivial in comparison to some of the physical & emotional issues other people have, but their still having an impact on me. Sharing helps offload it and also our amazing new friends come up with great tips & ideas.
I’ve got lovely weather today. I hope it’s the same for lots of you. Whether you enjoy it from the warm and comfort of your bed/sofa or you venture out, soak up some sun - that always makes me feel recharged and happier.
@emsd2025 Amazing news. Soooooooo happy, chuffed, thrilled for you. Fantastic. Wow and you may not need the next chemo. That’s incredible. What a response. Fantastic news. Glad things improving for your Mum also. Double good news Good luck with your last weekly!!
Hi @dizzy3 Glad your day is starting well. Good luck for the results from your mri. Countdown is on for you until PICC line is out!! Hopefully it’s not long until you can have brownies and cheese again!! Enjoy the good weather. We had it yesterday but does not look like we will have it today.
Hello @molly.m lovely to hear from you but I’m so sorry to read about the side effects you have been having. I think lots of us can relate in our own way. Tears are OK, I think we have all been there. Well done on getting into work, that’s a major task with all you have been dealing with. Sending hugs and luck for the last two rounds. Hope you can get through them a little easier. Can your care team recommend anything for the neuropathy and toes?
@anim4l Hope you are doing OK, enjoy the time with your daughter now she is off. What a wonderful family you have taking her to see santa and other activities so you can have rest and your daughter can still enjoy the festivities. Love the elves! Hope your tiredness improves for you and the steroid curse eases. It sounds like I am on a similar path to you, Surgery around 4 weeks after chemo, then radiotherapy then restart IO only.
@buggeringon Yes I think the unit has a bell but although it is the end of my weekly, I start three weekly the following week so any bell ringing will have to wait till end of February! Hope you are not having any side effects from the flu jab. I love garlic and have been adding it to as many meals as I can!
@cridders glad to hear you are feeling better, hope you are having a good weekend. Gosh it’s a rollercoaster isn’t it sometimes.
@story1 how is the fatigue and tiredness going? Hope things are improving for you now and it is easing.
Omg the day 4-6 EC crash hit me, so scared last night, shaking, hot/cold so close to going to A&E but temp held. So weak, crying, terrified. Not moving today. Love to all xxx @molly.m so good to hear from you, even though you feel so bad lovely, we’re all here xxx I definitely didn’t panic as much as I could have because of the strength of this group. I’ve never felt anything like it I felt as though my skin was jumping and I was about to fall downstairs. I’m nibbling bits and sipping broth to keep my salt up, I’m fine if I rest so I’m watching the P Diddy thing on Netflix, what a horror! Had a really good cry on my husband, that helped xx it’s so hard watching everyone get excited about Christmas isn’t.
@story1 - that sounds so frightening, I’d suggest you ring the oncology nurses on Monday just to check things are ok. It’s definitely my experience that the chemo is cumulative and we’ve been through a lot already.
Today is a beautiful sunny day here, I was supposed to be going for a gathering around the fire pit with my art group but I definitely don’t have the energy. I’m also supposed to be making a Christmas wreath with my neighbour which I was too tired ti do! I usually make at least 6 wreaths each Christmas - for my house, for family and for one of my colleagues who lives locally. I think I’ll be lucky if I manage one for my house this year -I spent 10 minutes cutting down one bucket of pine this morning and that nearly finished me off!
I definitely feel the effects on my cardiovascular fitness and I’m also less steady on my legs - which I think is the inflammation post chemo .
I’m airing out the house today after my well meaning neighbour wandered in (she’s had chemo herself so should know better!) so freezing on the sofa but it’s probably time to air out the house.
Jane x
high in both iron and vitamin c. Often prescribed in India for anaemia I believe.
, I’ve got masks inside, wondering about whether Xmas shopping is worth it or whether best to do it online. Really want to go into Bromley 
when people say to me only 2 more left, well you only have 2 more then its done…. Yes, its only 2 more, but its 2 more times of feeling awful for weeks while everyone around me is going about things normal and enjoying them selves and eating what they want, walking where they want. 2 more times of feeling sick, and aching and feeling awful. Days of being stuck on the couch. And 14 more of the bloomin self injections.
Good luck with your last weekly!!
Hope you can get through them a little easier. Can your care team recommend anything for the neuropathy and toes?