Hello everyone, this week I start chemo. As I understand it, 4 cycles of Doxorubicin, Cyclophosphamide and Pegfilgrastim then 12 cycles of Paclitaxel. I am looking for any advice and tips on how to get through it.We all know that experience and side effects are all different and individual but it would help to know how others have coped. I haven't had my introduction session with the oncology nurse yet and the fact sheet is a bit scary.I am in Melbourne and will be treated at St Vincent's private in East Melbourne as that is where my medical oncologist works. For the time being I am remaining a private patient as insurance covers it. I am choosing to try the 'cold cap' to see if it will help with not losing hair but as I have fine hair and already experiencing age related hair loss, it may not work. I know it will add about 2 hours to treatment and am willing to give it a go.My plan is to take audiobooks and colouring books with me to pass the time during treatment. I'm aiming to keep busy but not taxing myself too much. At this stage I do not plan to work on treatment days but do plan to work from home other days.A friend has suggested a probiotic as a precaution as a relation and her mother used one during their chemo and found it helpful. Has anyone else found this?With the second treatment and Paclitaxel I am concerned about the possibility of peripheral neuropathy side effects due to a previous condition. I read in another post that some ladies have tried cold gloves and socks - has that worked? I will have to look into it further but am curious and want to be prepared.Thank you all for reading and any advice and tips :heart:

Hii @sunrise_sunset, all the best with your treatment. It is all a bit scary, the first day of each new treatment was the scariest for me as you don't know how you will react until you start.I had the same chemo plan. The AC 4 rounds were probably the hardest for me (and I think most people). I didn't get any nausea, the medication for treating it is much better these days. I never completely lost my taste either, my appetite was ok as well, and didn't get the metalic taste with water either. The first few days after treatment were ok, the steroids doing their job, but from day 4-8 I got pretty severe fatigue, so lots of naps and resting. For me the fatigue with AC was the worst side effect. There were days when having a shower was hard work and I'd have to lay down and rest after.The steroids can give you insomnia, but as I suffer from that anyway it didn't really bother me more than it does normally. I tried to do as much exercise as I could, mainly walking and stretching. As it was wet season in Darwin and pretty hot I bought myself a walking pad/treadmill and would do 15 minutes walking blocks watching the TV, I tried to do this even on the days when I was really fatigued. Week 2 after treatment was my 'good' week and I felt ok.I didn't work during AC but went back 2 days a week through the paclitaxel treatment. I felt generally better on paclitaxel, no severe fatigue. My treatment centre didn't offer cold cap, I'm not sure how effective it will be with AC but no harm in giving it a go. I'd definitely try the gloves for paclitaxel, I ended up with some peripheral neuropathy in my fingertips, although mild, and my nails on my hands suffered. The chat 'struggling though chemo' will give you an idea of the side effects you might get. Most of my side effects were fairly minor, although I got terrible mouth ulcers around session 7 of paclitaxel.Overall I found the treatment manageable. I had great support from my husband, friends and work. Don't be afraid to accept help when you need it, take it easy and listen to your body. I tried to get out and catch up with friends when I felt ok, mainly in outdoors setting as I felt this reduced any infection risk.I'm over 5 months post chemo, and feeling ok, almost normal. I was actually quite surprised at how quickly my body recovered from the chemo. The peripheral neuropathy is getting better all the time, and is only faintly in my fingertips now.

A reminder to all that COVID is still lurking about!Hope it's a light doseTake care

Hello! I just finished the same regime as you. I found very basic things really helped: hydrating++, eating well (small and regular, simple things - often bland), staying on top of nausea or diarrhoea with medications. I think probably the best thing I did was to reaallllllly try to stay active as far as possible. Nothing crazy - walks, yoga, gym for the first 9-10 weeks of the taxol (I was too tired after that). Staying connected with people helps. Talking a lot. A good psychologist. And - as people told me continuously - being really kind and forgiving to yourself and listening to your body. It's a lot of treatment. Take each day as it comes. I made daily "goals" list vs task lists and just tried to do what I could and maintain some routine and rest / sleep a lot too.I wasn't able to tolerate the cold clothes and booties in the taxol but I used compression on hands and feet. I did get some peripheral neuropathy (hands only) but 4 weeks out from chemo now and that has resolved 99% and is not an issue.wishing you so well with your treatment. I hope you're well supported xxx

Hi Katie46, I am starting exact same treatment this week. I just wondered how you are doing assuming you have now started. Do you have any advice for me ? Have you bought any caps or scarves, if yes where from? Generally, how are you feeling ?

Hi @scram, I finished my chemo and radiation treatment last July. I found it manageable, I didn't get the worst side effects, but did have really bad fatigue with the AC treatment. I just kept telling myself this was 6 months of my life, to hopefully come out the other side and lead a relatively normal life again. I had my last round of paclitaxel over 5 months ago, and I'm feeling pretty normal now. If you read through the post 'struggling through chemo' you will get an idea of some of the side effects we experienced, they vary from person to person. I tried to keep up some exercise, mainly walking and stretching, some days I didn't feel like it, and that's fine. The AC fatigue was bad on some days and I barely left the couch. The second week after treatment I felt ok.I had caps, scarfs and hats from various places, the caps and pre-tied scarfs from Jaz hats (I think that's what they are called) on the internet. I also bought some hats from Target which I'm still using as sun hats. Best wishes for next week, you will get through it and out the other side.

Starting chemo this week: Doxorubicin, Cyclophosphamide and Pegfilgrastim then Paclitaxel

13 Replies

Susie65
Member
2 months ago
Hi there… 💞 It’s great to read everyone’s experiences…after reading yours I see it was a year ago..I do hope all went well and your through the other side xx
Ive started this regime 4 days ago…
- Christina_BCNA
  Community Manager
  2 months ago
  Wishing you all the best during this chapter Susie65 , please give us a ring on 1800 500 258 if there's anything we can do to help, or just to talk through your thoughts :)
SoloDogMum
Member
9 months ago
Hello! I just finished the same regime as you. I found very basic things really helped: hydrating++, eating well (small and regular, simple things - often bland), staying on top of nausea or diarrhoea with medications. I think probably the best thing I did was to reaallllllly try to stay active as far as possible. Nothing crazy - walks, yoga, gym for the first 9-10 weeks of the taxol (I was too tired after that). Staying connected with people helps. Talking a lot. A good psychologist.
And - as people told me continuously - being really kind and forgiving to yourself and listening to your body. It's a lot of treatment. Take each day as it comes. I made daily "goals" list vs task lists and just tried to do what I could and maintain some routine and rest / sleep a lot too.
I wasn't able to tolerate the cold clothes and booties in the taxol but I used compression on hands and feet. I did get some peripheral neuropathy (hands only) but 4 weeks out from chemo now and that has resolved 99% and is not an issue.
wishing you so well with your treatment. I hope you're well supported xxx
- Susie65
  Member
  2 months ago
  Hi there..I’ve started the same regime 4 days ago..it’s great to read others experiences ..Thankyou
  I wish you well on your journey 💞
Katie46
Member
1 year ago
Hi @scram, I finished my chemo and radiation treatment last July. I found it manageable, I didn't get the worst side effects, but did have really bad fatigue with the AC treatment. I just kept telling myself this was 6 months of my life, to hopefully come out the other side and lead a relatively normal life again.

I had my last round of paclitaxel over 5 months ago, and I'm feeling pretty normal now.

If you read through the post 'struggling through chemo' you will get an idea of some of the side effects we experienced, they vary from person to person.

I tried to keep up some exercise, mainly walking and stretching, some days I didn't feel like it, and that's fine. The AC fatigue was bad on some days and I barely left the couch. The second week after treatment I felt ok.

I had caps, scarfs and hats from various places, the caps and pre-tied scarfs from Jaz hats (I think that's what they are called) on the internet. I also bought some hats from Target which I'm still using as sun hats.

Best wishes for next week, you will get through it and out the other side.
scram
Member
1 year ago
Hi Katie46, I am starting exact same treatment this week. I just wondered how you are doing assuming you have now started. Do you have any advice for me ? Have you bought any caps or scarves, if yes where from? Generally, how are you feeling ?
iserbrown
Member
1 year ago
A reminder to all that COVID is still lurking about!
Hope it's a light dose
Take care
arpie
Member
1 year ago
Oh that's a real bugger @sunrise_sunset ... cos you DO have to 'build yourself up' to the first treatment - after that, it usually isn't as spooky :(

I hope you only get a small covid dose - I had a shocker in Jan (my first & only time.) I hope you are on the anti virals straight away xx
joannag
Member
1 year ago
Oh that’s so frustrating for you! Hoping you recover quickly so you can get the first treatment out of the way. The waiting/anticipation is hard.
sunrise_sunset
Member
1 year ago
Thank you @Katie46 @arpie and @joannag for your responses, sharing and tips. I will take a closer look again as unfortunately I am screaming into the void at the moment. Long story short, I got Covid and so my chemo is being delayed, hopefully by only a week or so. I've been so careful too so I am really annoyed.
joannag
Member
1 year ago
Hi @sunrise_sunset, I have just started the exact same regime here in Sydney. I decided not to do cold cap but I hope you get some good results!

I stated on Thursday and have felt ok - just like a foggy hangover. The steroids gave me a fluttery heart feeling but doing their job I think. I’m kind of relieved to be started, the anticipation was hard. My oncologist has suggested 10,000 steps a day if I can, and it definitely feels better after I have been for a walk. Let me know how you go!
arpie
Member
1 year ago
Wishing you all the best @sunrise_sunset xx.

If at any time you feel crook (even during chemo) make sure you let the nurses know. Maybe keep a 'diary' of side effects that you can show them/Onc ...

take care