Hi lovely ladies,
I hope you don’t mind me joining this thread on behalf of my Mum. We’re thinking she’ll start chemo late March (and if it ends up being April I’ll hop over to that thread). All dependent on various tests coming back OK.
She was recently diagnosed with IDC Grade 3, ER 8, PR 6, HER2 +++ so her treatment plan is chemo first, then surgery and whatever else they need to throw at it!
She’s in her 70s, and doesn’t really do forums, but I think I’ll find the info useful to pass on and who knows, I may even persuade her to say hello!
I had a different chemotherapy treatment to you but I also found I had a flushed face the next day. I phoned my emergency line and they said it was because of the steroids. As well as taking some on the morning of the chemotherapy I was given extra to counter-act a reaction I had to the drugs. This double-dose resulted in me talking for England for the evening before crashing and then spending the next day trying to cool my face down
I’m grade 2 her 2 negative and infected nodes. I had single mastectomy and full clearance. Before clearance I had 2 infected nodes, after clearance it was 7 infected nodes so I’m having chemo and radiotherapy. Hopefully you won’t need chemo, it would be ideal to have the clearance before then you’d be in a better position to make a decision on chemo x
@stafford22 I guess thats what Im afraid of, that there are more affected nodes but then they are saying that the radiotherapy will tackle the cancer in the nodes if there is more there. It doesnt help the chemo decision though.
I feel like Im going to have to do chemo just to not make the mistake of missing out on it if its not needed… but then it may not be needed and I traumatise my body for no reason. Urgh, this sucks! x
It really does suck! And we’re not the experts to make the decisions but it is our bodies. Like you said the radiotherapy would zap the nodes. I had a full clearance, my surgeon didn’t mention any other alternatives. See what the oncotype says then it may give you more confidence in making the right decision for you.
I’ve got to have chemo which will be hard, my surgeon said it’s a belts and braces approach x
I had OncoDX - score 33 hence chemo. According to the studies that means my recurrence risk will reduce to about 7% from 21% which to me makes it really worthwhile. Plus radiotherapy , letrolzole and biphosphonates for years after
This tells you about Onco and there are patient level leaflets if you mooch about the site (node negative and node positive).
What was confusing for me was it said score 33 means 21% risk of recurrence with an absolute benefit from chemo of over 15% (have a look at the leaflets). I thought that meant a 15% improvement on the 21% which didn’t seem especially worthwhile. It comes down to the graphs you get on the 2nd page of your report, your score, your age and are you pre or post menopause.
I managed to interpret the wrong graph at first - d’oh! Once I was looking at the right one after talking to the onc. I understood what was looking at and hence understood my risk of recurrence improves to about 7% (4% to 9% confidence interval)
Flat days come and hopefully then go. It’s a lot to take in and process and it’s a bit shnit! Maybe have a chat with one of the BCNs on here - I spoke to them and they were fab. Also maybe try ‘someone like me’ … you don’t have to live with it all in your head by yourself
Hello ladies, I’ve just joined this thread, and although my story is simple and similar I am thankful I am not alone.
Iam on an EC-t regime every 3 weeks which started Monday (this week) and I’ve already lost a lot of my hair! ….everywhere!
Fatigue is real, and I know it is going to get harder as time goes on through this treatment.
Radiation and hormone/endocrine after …I don’t have a younger child but I do have a disabled one who I can’t look after the same way I used to already which breaks me!!! X
I have become reliant on friends in this past week more and more yet I’m not going to let this be the beast that defies or my daughter xxxxx
Struggling today, back in the hospital after raised temp and few other symptoms, used my pants card to get antibiotics then was a 4 hr wait to see the dr! Now on fluids and will be on anti sickness. They have no beds so just sat in a chair, really uncomfortable and just want to sleep. Sorry for a moan but just feel like its one thing after another at the moment x
Welcome and sorry you are struggling. Hopefully you’ll start to feel a bit better very soon. @Bernard_BCN may be able to connect you with ‘someone like me’ which might help? It’s hard but you will get through it
Sorry you are struggling, it’s not nice being unwell and needing hospital treatment at the best of times let alone when receiving chemotherapy.
I’m sorry you are not in a bed and hope you are being treated away from those who may be infectious.
It’s not uncommon to need hospital treatment during chemo, I had 12 weekly Paclitaxel and had a temperature sent home with antibiotics, then temperature returned 4 days later and I was hospitalised for 6 nights.
You are in the best place to get the treatment and care you need. I hope you have a bed soon, it’s not easy to sleep in a chair. I hope you have someone with you that can advocate about your situation, can you ask to speak to an oncologist?
wear something comfortable and something and I sucked ice lollies during infusion to help preserve mouth, took them in a cool box and just kept sucking one after the other whole infusion. I did still get thrush mouth but fluconzole tablets cleared that up get some senokot and anosol ready if your steroids block you up, sorry if tmi Shi xx
Hope you managed to get a bit of sleep how are you this morning, don’t be afraid to stand your ground if you feel you are not being taken care of Shi xx
…I don’t have a younger child but I do have a disabled one who I can’t look after the same way I used to already which breaks me!!! X
xx
get some senokot and anosol ready if your steroids block you up, sorry if tmi 