I’m thinking of going to my local 5k your way too eventually. I’d be walking it mind you but it would be good to meet people.
You know when you feel ok in the house so you think I’ll just pop to Morrisons … good god I didn’t realise how foggy my brain was until I got there! Literally wandering around like a zombie. Made it back ok
My feet feel funny today. Kind of spongy. It’s a weird feeling. I always expect the side effects to be in the first few days after chemo. I don’t like these late surprises
Good things today… I’ve bought some Maltesers to eat whilst watching strictly later.
My feet feel weird too! I can’t describe it but could be spongy! So odd! I’m wearing comfy trainers around the house and still finding walking feels weird.
I have found with Dox I get side effects starting in weeks 2 and 3 and they never fully cleared before the next one - so different to EC for me when I was always cleared of them and basically normal by about day 11.
Last injection for me tonight. I can’t quite believe it is finally here, for me it’s probably the biggest chemo milestone I have dreamed of. I’m expecting to be a bit emotional after that tonight. I’m going to try and forget there’s still RT and a decade of drugs to get through and enjoy this milestone for what it is. A flipping brilliant one!
@sassy3, I will try ice and the thick cream and see if it helps. It can be very itchy and scratching I find makes it even worse. Any thing to help relief it, I will try. Thanks
Hello, kept my head down the last few days, but I have lurked. Good to see so many people talking about exercise and planning. @runnerjen enjoy reaching the milestone, it is a massive step forward! I have also had spongy feet! Seems to have been short lived but it’s reassuring to hear other people have had the same, means I’m not going mad.
My dad died yesterday, hence head down a bit, and as well as the emotional stuff I’m having to organise things unexpectedly (my sister was doing this because of my treatment but is on holiday) I’m trying to take it easy and my husband is being a brilliant support. Dad died not knowing I’d had cancer which is some comfort, but that’s because he had dementia, which is not. Hope this doesn’t upset anyone, will remove if too much x
I’m so sorry for your loss @nelly1 Glad your husband is being a lovely support and hopefully when your sister returns you will be able to support each other. X
@nelly1 I’m so very sorry for your loss. Of course it’s ok to share. We’re all in this together for the ups and down. Your dad dying is one of the biggest downs you can have.
I can’t remember where you are in your treatment but I hope you have a little physical and emotional strength to keep you from sinking. Sending love and best wishes.
@runnerjen the last jab was a big emotional milestone for me and the tears sprang out of my eyes at the relief in reaching it.
Current side effects are weird. I definitely had spongy feet after dox 2, I currently have hurty toes. Two in each foot are really sore to touch. I’m fine in sandles but i can’t wear closed in shoes. I have a red line, like a tide line, around my heels which is tender to the touch too.
I’ve had to cut my fingernails really short as they are sore and brown too. I’ve been using poly balm which I’m sure helps but I can’t open some packaging with my fingers at the moment.
My legs feel like I have permanent DOMS which is frustrating. Although I can go for a walk and they don’t hurt. I just can’t climb the stairs!
I also have random red blotches. On my hands and arms. It’s like the chemo is trying to find ways out of my skin!
I really hope these side effects pass soon. I know I couldn’t go again on Friday if I had to so that’s something I’m grateful for.
I’m really sorry to hear about your father @nelly1. Coping with your own diagnosis and treatment while your father had dementia must have been incredibly difficult. I’m so glad you have a supportive husband and hope that you both have lots of support from wider family & friends too. Will be thinking of you. Xx
I’m so sorry for your loss @nelly1 - you’ve had his illness to cope with alongside your own - what a heavy load you have carried. It’s good to hear that you have support at home now more than ever, and I really hope you can rattle quickly through the short term side effects at least to give you some more strength to focus on the arrangements. I lost my dad in 2024 after a long illness and I’m eternally relieved that he hasn’t had to see me go through this year.
I have had my final injection, there hasn’t been any emotion but my husband (who did them all due to my phobia) and I are DELIGHTED that chapter is over.
I just realised how weird my fingers are trying to cut up a jacket potato skin with knife and fork. So I have definitely got the nerve damage. I read that can get worse for a while after the last treatment before it starts to improve so fingers crossed - if you can - we will be ok in the end.
Thanks everyone, your comments really helped and meant something. Things are hard at the moment but I’ve found myself able to compartmentalise at least the practical things I’m dealing with to do with dad, for self preservation purposes. Not something I’d have done before diagnosis, I always found it hard to say no.
Thankfully, side effects are minimal/manageable after my final chemo eleven days ago. Still got tingly and spongy feet and unpredictable sleepiness.
I start radiotherapy on 29th for three weeks, and dad’s funeral will be in the middle of that. @runnerjen I’m so sorry to hear about your dad and I understand you being relieved he didn’t have to see his child go through this.
This is a reminder that life (and death) go on whilst we all cope with this massive, horrendous elephant. And I’m glad we’re all here to help each other through it, whether we’re lurking or commenting or just liking a post. It all matters x
@nelly1 so sorry to hear about your dad. Sending lots of love.
Decided to try & take some time off my phone the past few weeks. I’ve been feeling a bit low since finishing chemo which I wasn’t expecting. My whole focus since June has been getting to October & finishing chemo, since finishing I’ve just been feeling a bit lost. Thought I would have appreciated the break between finishing & starting radio but it’s been quite tough & I just want to move onto the next step.
@brox@runnerjen@twinks77 and anyone else suffering with foot pain. The good news is that my very painful heel is less painful now. I couldn’t even have that heel touching the bed when lying down as it was so sore.
One of my toes felt like it was broken and I could hardly bare socks touching it. The nail has gone black and its still very sore but getting better.
My fingernails are brown (there was a dark line that started at the beginning of chemo that has gradually moved up and coloured in all the nail) and very ridgey. Ive cut them very short as catching them on anything is quite painful. Polybalm has been great and feels like I’m nourishing them somehow.
Fatigue remains my biggest challenge. Im sleeping 9-10 hours a night, waking up exhausted and the muscle aches are very much there in my legs and arms.
I do feel like its improving every day in tiny increments, Im just over 2 weeks since my last infusion of dox.
I can on to ask something else but thought sharing this might be useful.
xxx
A question about drugs… Im seeing onc/radio tomorrow about radiotherapy (15 sessions expected) and a chat about the drugs I’ll need to be taking. Im half expecting to come away with a prescription for Letrozole (Im 56 and post menopausal).
The last onc mentioned that they may put me on 3 years of Rybocyclib (spelling?) instead of 2 years of Abemocyclib (also cant spell this). Does anyone know what the difference is? Ive not heard of Rybocyclib but they said it was new (I think) but I know the results of taking abemocyclib have been very good in a recent report.
Have any of you got any usful info or insights to share?
Thanks xx
I think it’s Ribociclib-only just licensed for early stage BC following Natalee trial. My understanding is that it’s generally better tolerated and doesn’t give you the runs like the other drug. I think the eligibility criteria are slightly different too eg I think you need to be node positive to be eligible for Abemociclib (or however it’s spelt).
I’ll be going on Letrozole plus Ribociclib. They monitor you v closely while you on Ribo-I was a bit shocked to hear that I’ll need to see oncologist every 2 weeks for first 3 months…
I’m still really fatigued nearly 2 weeks on from last Dox-thought I’d have more energy by now. Still, I’m just back from rads planning scan & it was a breeze after chemo. No blood tests, weigh ins or cannulas!
Thanks @jenny4 I had 10 out of 20 nodes positive so I’m feeling that my risk has increased significantly from my initial diagnosis where my lymph node biopsy was negative! I was told by the first surgeon I saw that I’d be done in 3 months as I had no node involvement and it was a very slow growing type of cancer.
Here I am 11 months later after 2 surgeries and chemo! Ah well, it is what it is and we need to embrace the best of what is offered.
My brain fog is in peak flow so Im not sure Ive got this right but is it an oncotype score? Mine was low although I’d have liked it to be lower. It was under the cut off so if Im remembering right, and the cut off is 25, then mine was 21 I think. Anyway, I have a feeling that I’m higher risk than they originally thought so we’ll see what they say tomorrow.
I thought you had to have blood tests every 2 weeks but didn’t realise that you had to see an oncologist too. Oh for a time machine to get back and forth to the hospital.
I start Letrozole in mid-Nov and Ribociclib in early Jan. I didn’t have an oncotype score as my age and tumour characteristics meant I had to have chemo. I’ve been told I’ll have Ribociclib as I have a higher risk of recurrence but don’t meet threshold for Abemaciclib.
It’ll be interesting to hear which drug your oncologist recommends and why.
It must have been an awful shock to be told your nodes were clear and then for 10 to come back positive. There are so many unpleasant surprises where BC is involved aren’t there? My biopsy showed tumour as Grade 2 but full pathology showed it was Grade 3 which is when treatment plan got a lot more hardcore. I know we’re fortunate that they have these new treatments to help reduce our recurrence risk-fingers crossed that the side effects are manageable…
Did anyone who had their radio planning appointment / scan get the tattoo markers? It was mentioned to me in my appointment back in August but now I think about it more I really don’t want to have them & I’m curious what other hospitals offer.
