Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Nonamelass i have to laugh. A nurse called me this morning to say I needed to do labs again and please do them as early as possible. Off we went. Drove to clinic where receptionist said there were no labs ordered. I asked could they message my dr. which they did. As we were walking out of clinic the same nurse calls me to say no new labs needed. Smh 🤦🏻‍♀️. Tomorrow we’ll be crossing a strike line. I feel bad for the women expecting babies. Scary times for them. We did manage to find a pharmacy within our area (as opposed to driving out of state 😝😵‍💫).
Wishing everyone a good week in the fight. Hoping for negative scans and labs within normal limits.

@ohdoriswheresthesalad Welcome and of course you can. It’s a great site. I’m so impressed by the NHS’s 2ww. It was 3 months from my diagnosis to starting treatment (which I thought was a bit long but idk 🤷🏻‍♀️?) praying for the best for all.

I’m sorry you are knackered @FcukBreastCancer. Five sessions done is five more than last week though right? You will get through this. Strength and determination!

welcome @ohdoriswheresthesalad. I had weekly chemo for 15 weeks and now I’ve swapped (not so successfully perhaps) to anti-hormones and dreaded steroids. Chemotherapy is not that that bad, just be aware that you will get more tired each week 💐

When do you get your results? I hope you avoid chemo. I have primary breast cancer (the er2 hormone fed type) plus secondary (metastasis) lymphangitis (that’s causing the issues at the moment) and the beginnings of bone cancer in my ribs and skull. Not looking forward to that but hope it stays away from my spine!

definitely rely on your SiL @Nonamelass. I’m of the same opinion - no one lives forever so may as well get this sorted now 😊 I was all ready to get back to work yesterday and then I had IT issues which scuppered me. Oh well, today is another day.

I’m meeting friends for coffee at lunchtime which I’m looking forward to . My younger friend is bringing her baby who is just 5 weeks old. This will be the first time I’ve met him. Lovely baby cuddles 🥰

@ohdoriswheresthesalad I had invasive lobular. Grade 2, stage 2. Hormone positive, her2 negative. I think it wss about 3cm in the end. They had thought bigger from scans. No lymph involved although itvwss surrounding them so they took out 9. Small miracle I think.

All the best @Sbmpp💐 we have had strikes here too - junior doctor, but (I can’t speak for the others) it hasn’t affected me and they’ve been amazing throughout . Your nursing team don’t sound very organised. Perhaps it’s the strike? I hope your chemo happens on Wednesday. Everything crossed for you.

Hi ladies, I’m joining 👋🏽 I recognise a name or two from the cancer thread. Thought this one might be a little more relatable, perhaps.

Triple negative BC, beholder of rarest of genes (lucky me). Have two little DC under 3. chemo weekly for the past 12 weeks. Working full time, soft play every week. Every week I get a different symptom, rash, nausea, mouth ulcers, joint paint.

Life is a roller coaster. Hoping to beat this one week at a time!

@Bangersndmash Hi Bangers we’ve met before 😉 come on in and pull up a chair. I wish I could make you a cuppa you deserve it ! Xx

@Sbmpp arghhhh that must have been so frustrating !! Good luck with chemo today💕 Îm sure they won’t mind patients crossing the picket line? Xx

@Sbmppthank you for the welcome.
me too, from diagnosis to op was 19 days. This last results bit is taking a while though.

@Ventresshello!
Hope you have a lovely day with baby cuddles!

I don’t know about results. Could be today could be next Wednesday depends when they come in, I was told if it’s after today it’ll be next week as the MDT meetings are Wednesdays.

I think my radiotherapy was a bit different as they had to do two areas and nearer skin surface. So they had to spread it out over more sessions. I assume so that I dont fry too much.
They also have to put a wax layer on my skin so the radio waves hit my actual skin. So I'm expecting burning!

@Ventress yes by Friday I'm more than half way. Ticking them off.

A rare bit of sunshine today so look forward to seeing it. I'm at hospital early.

Ahh ok, and you avoided chemo from the oncotype testing?
I really hope I don’t need it.
I was told adjuvant chemo is that right, if it comes back a higher score.
So once every 2/3 weeks for 12 weeks, then a break. Then 3 weeks of radio 5 x days a week along side starting hormone therapy.

I hope your radiotherapy journey is going ok!

@Bangersndmash oh blimey you have a lot on your plate. I hope you have some help with the kiddies. Mine are a bit older which makes a bit different. School run is a pain but radiotherapy have tried to help me adjust timings. Wishing you well.

Hello, I’m a newbie too!
how are you feeling?

@ohdoriswheresthesalad that's right. Low oncotype score for me. I was surprised when they did it as I was already told no chemo. But my first consultant spoke a load of shit..one step at a time is best way and everyone has a different treatment combination.

Yeah I was too as was told the same, no chemo. So went into meltdown when it was mentioned. All I heard was chemo and lymph node involved and spiralled into a hole. My partner is very good and obvs listened more than I did and explained the whys and what fors etc.
My consultant has been wonderful, but I have a tendency to only pick up the bad bits of the meetings and hold onto those.
She said it’s unlikely to come back I need it as it’s low grade my biology is “good” blah blah but they have to send it away.

You are superwoman working full time as well as having treatment plus 2 little ones!

Thank you. This little corner of MN is really, genuinely, lovely and supportive. I really appreciate all the kind souls here who are on a difficult journey like myself. We all deserve a medal.

I’m glad they’re working to banish it completely @Bangersndmash. I agree with @ohdoriswheresthesaladthat doing all this plus young children is really difficult, but gives you good reason to do it 😊 My son is 18 now but I remember what it’s like with little ones.

Also very pleased that your oncotype score is low @FcukBreastCancer. Avoiding chemo if you can is a good call - particularly with small children. Glad they’re working and the radio is nearly half way there.

I’m assuming you are pre-menopausal @Bangersndmash? My sister (also primary bc but much worse than me- surgery them chemo then radio now anti-hormone) had has to do the crash menopause. That doesn’t sound fun. I’d started menopause (hot flushes, lack of periods etc) but now I’ve moved to the Letrozole and ribociclib it’s all come back with a vengeance. I hope you have an easier time with it.

Fingers crossed it’s today @ohdoriswheresthesaladits the waiting that’s worse part isn’t it?

Thank you, yes I do, I honestly could not do it without the help of my mum, who helps look after my kids when I’m at the hospital all day having chemo. She truly is a walking angel!

I’m feeling OK. I was a hot mess in the beginning, really struggled with the unknown. For me, it’s difficult, the side effects aren’t great, chemo isn’t a walk in the park, but I would take it all x1000 over if it means I get to live a long life and see my babies grow up.

i have chemo weekly with pacli and also immuno drugs; then changing to different drugs come Feb/ march; then surgery; then more chemo and radiotherapy. How are you? Sorry im catching up with all the pages, where are you on your journey? Sending big hugs and support 💘

I’m sorry I don’t really know much about it all. Would you mind me asking what is the crash meno? I try and stay away from google as it’s terrifying.

i am in my 30’s, my periods were regular and i was sadly going to start growing my family again until I found the lumps and bumps. I was approved for IVF pre chemo but doctor suggested not to wait as it was looking like 6-8 week delay of chemo and I have an aggressive and fast growing one so we made the desicion to not hold anything up and start. I now think I’m going into menopause or atleast something crazy is happening, my periods stopped about 8 weeks into chemo. I’ve had non stop hot flushes all night (JUST in the night) I have to strip bare sweating. I assume, sadly, that this is the start of the menopause.

Hi all. Just checking in. I’m still in the “phony war” stage. Immunotherapy starts on Monday, and no idea how I’ll react. I have a long list of scary possible side effects, but know that most people are fine with it. And I am currently fit and healthy (I mean, apart from the melanoma mets!!)

Last time I had immunotherapy they only gave me 3 doses because it caused very bad liver toxicity- but that was as an adjuvant treatment so it wasn’t too big a deal when I stopped. I keep telling myself “there will always be a plan” but it’s not always convincing!

Sorry - just needed a little vent!

I suspect it’s part of meno @Bangersndmash. The Crash memo is just that it happens in one go rather than staggered out and you can’t take any of the usual treatment for menopause. So, hot flushes, periods stopping - basically all the stuff you have heard about for memo. I’d started it but now I’m having it again. Great. Except the periods. Luckily they haven’t restarted.

I’m sorry about the IVF. Were they telling you you could postpone treatment by 9 months to allow for a pregnancy? That must be a good sign.

The hot flushes in the night are a total git! I don’t have such a problem with them during the day. My sister is permanently attached to her hand fan and sits outside a lot!

I hope the immunotherapy is better this time @Onewildandpreciouslife. Are they trying a different type? They seem to have had a lot of success in this area in the last few years.