Hi all,My nurse has just introduced me to this group.I’m hoping to connect and share my story and hopefully somehow feel better.After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it!Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories.I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through.Looking forward to connecting 😊

Hello Rona, I've done 3 of 4 AC then on to 12 rounds of paclitaxel, then radiation. I'm lucky too to have a good support group around me, and my side effects have been relatively mild, but the fatigue floors me the first week after treatment. I flop about for about a week, before getting a 'good' week where I feel almost normal, catch up with a few people for hot chocolate (coffee now tastes musty) venture into the supermarket, just to get out of the house. Then into the next round. I'm hoping I might have a bit more energy with the paclitaxel, and maybe work from home a few days a week. Some days it feel like a very long road, but I keep telling myself it's for all for the greater good, and look forward to the beginning of June when the chemo side of things should be done. Katie

Hi, First time replying or posting anything here! I feel like I could have written your post! I am however behind you in timeline. Had a mastectomy, node clearance and recon on 14 December and started chemo last week (fortnightly AC x4, then weekly for 12 weeks). I just wanted to reach out and say hi and you are not alone. I coped amazingly with surgery but fear chemo will be a bumpy ride (it already has been). I am also struggling emotionally as well. Before all this happened, I had a trip to Hawaii booked and would have been leaving Sunday. Wow how life has changed. I also get having a great support system that can't possibly understand how this all feels,. I can't imagine doing all this without them, but they get to have a break from my hell hole while I have to live with it everyday. I feel guilt that I make them worry too. Anyway, I know I have not helped, but what I take comfort from is that many sisters have been in our shoes before and have made it through. I refuse to let this be anything more than a chapter in my otherwise fantastic life book.

Hi Gorgys, yes I have the injection 24 hours after. No side effects for me so far and I've had 3.

Hi Katie46Great to hear your news! I also got my 2 year all clear today too!, WOO HOO!I am pretty much back to normal also, whatever that is! I've been on ribociclib for about 9 months now. Also managing it but will be glad when I no longer have to take it. I get fatigue particularly in the 3rd week of my cycle (you have 3 weeks on and 1 off each month). I recently had a wonderful week break courtesy of the Otis Foundation.Hope everyone is going well 🙏

Hi Paris_24 I found with return to work a gradual approach worked for me. I was still working from home whilst having treatment on and off, I went from a day or two a week to a 5 day fortnight then 7 day fortnight then 8 day fortnight to full time over a few months. I've been full time since May which was 1 year after I completed chemo (I had radiation after that). My advice is pace yourself and rest when you need to. Best cure for fatigue is exercise but sometimes you really need to rest too! Best wishes for your return to work.

Struggling through Chemo | BCNA Online Network

344 Replies

Katie46
Member
2 years ago
My ulcers have gone 🥳 Number 9 done, dose reduced by 30% so hopefully they won't come back 🤞
Rona
Member
2 years ago
Well Katie, I’m hoping this taste in my mouth miraculously disappears and who knows….. might get a Chinese meal in 😂
Katie46
Member
2 years ago
Noooooooooo!!! Oh Rona, that must be so frustrating, I'm glad you could enjoy your day out anyway. On the bright side I'm sure your body will be happy with the break, mine is. Hopefully you'll be good to go next week, and you'll have another opportunity to wear your clown suit 😆
Rona
Member
2 years ago
Oh you wouldn’t believe it……. cancelled 😩. I’m all dressed up with my sis in our clown outfits, on our way and the doc called 😢. So my neutrophil count is too low and I am of high risk of infection 😩.
So…… off to doctor google I go to get answers 😂. Apparently a healthy adult will have a neutrophil count of between 2500 and 7000. Chemo patients obviously Is lower but now mine is too low (0.7). She told me to report straight to ED if I develop a temp or become unwell. Seriously could not believe it!
As we were near the shops we decided to grab a few groceries and dressed as a clown was a little challenging to say the least 😂. So Katie, all in all I had a good day, no bell but hoping to rid of this taste with the unwelcomed set back.
Katie46
Member
2 years ago
Hope you have fun today @Rona 🎉 my ulcers are finally getting better, uncomfortable now instead of painful, I don't dread eating now. My body is appreciating the week off, and I feel more positive heading into my last 4 rounds, rather than just tired. My taste never 100% disappeared, but it did fluctuate. At the moment it isn't too bad, I get a faint hint of most things, and thankfully no weird taste in my mouth.
Rona
Member
2 years ago
Thanks Katie 😊, the bell better be ready for me 😂.
I’m dressing up today in a tutu and a crazy coloured wig….. I want to have some fun today!
I saw the oncologist on Friday and had to walk the corridor heel to toe to ensure my balance hasn’t been affected before my last treatment, I passed and she congratulated me.
Hope you are enjoying your week off, how’s your mouth? Has your taste come back? Oh I can’t wait to rid this taste, I’m 6 kgs down now so hanging on to 54kgs. Hopefully tuck into that Chinese before radiation 😂. I’m living on cheese and tomato toasties with copious amounts of pepper….. never eaten pepper in my life! Lots of ginger lollies and black tea.
Just mulched my 300 veggie seedlings I planted on Saturday before going to work 😂, I’m a glutton for punishment but I can’t stay put.
Better get “dressed up” and go ring that bell!
Katie46
Member
2 years ago
Hi @Rona, thinking of you ringing the bell today 🔔🔔🥳
Katie46
Member
2 years ago
Hi @Rona, I can't believe you are working full time, 2 days is enough for me at the moment. There are soooooo many things I'm looking forward to eating after chemo, goats cheese is still top of the list!

I had an appointment with the oncologist today, he took one look at my ulcers are told me I won't be having chemo next week. Hopefully a break and medication will sort them out. He also said he'd reduce the dose for the last 4 because of the ulcers and my fingernails, although he was less concerned about them. I am happy and sad about the break as I just want to get it over with, but it's only a week in the grand scheme of things.

Hope everyone else is travelling ok.
Rona
Member
2 years ago
Hi everyone, sorry to hear you are having a hard time of the supposed “easy chemo” GorgyS. You are brave to keep going, I would be scared even though I have total faith in those nurses. I really hope the steroids and antihistamines help you to finish your treatment without more reactions. Keep talking to us about it all, understanding this path in life is definitely something we can all agree on.

Katie, wow, eight rounds, we’ve come a long way since the diagnosis of “you have breast cancer”. I still struggle with fatigue and that taste but then I spare a thought for the 57 women who were diagnosed today unexpectedly like me and the 57 tomorrow……. so happy then to be on the “other side”.
I stuffed up with my calculations on when I’m supposed to have my last infusion. I went in on Tuesday ready to ring the bell and my nurse said….. are you sure this is your last??? Ummmm, yes! Well no was the correct answer 😂. So next Tuesday is the last.
Fatigue is really hitting me hard along with that taste. I’m thinking 4 weeks till I’m off out for Chinese and then a steak with red wine jus soon after. I miss the taste of food. Still on a weight loss because of it.
My finger nails are all brown too and painful. My thumb nail is hanging in there. I’ve lost 2 toenails too.
I’m working full time with overtime and it’s almost killed me. My body really can’t take much more of this poison.
How are you Maree 72? So sad to read what you are going through. No words can help but rest assured you are not alone and we understand. When I was on the AC and not coping (which I didn’t cope most of the time) I told myself I was one of the chosen few to experience this and now that I am almost done with chemo….. I wouldn’t change any of it…… I’ve crossed it off the bucket list 😊
GorgyS
Member
2 years ago
Taxol hates me. I had a fourth infusion today and after 20 minutes I had another allergic reaction. Not as bad as the one with third infusion but the same side effects: discomfort in the upper chest, hot flush with red face and back pain. The oncologist on site decided to stop the infusion and she contacted my oncologist who was not happy to stop taxol. Instead he prescribed Dexamethasone 5 of them to be taken together on the day before chemo, Loratadine ( antihistamines) and Famotidine 2 days prior taxol. Whatever. I will do what they say.

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