Forum Discussion
Struggling through Chemo
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.
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 😊
344 Replies
Hi Katie46
Great 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 🙏
Wow Coastiejas that’s absolutely fantastic news, congratulations on your 2-year all clear! 🎉 WOO HOO indeed! It’s so inspiring to hear you’re feeling pretty much back to normal (whatever that means for each person). That Otis Foundation break sounds like such a beautiful gift, I’m so glad you had that time to recharge and enjoy yourself. Thank you for sharing your update; it really brings hope and positivity to the group. Sending you lots of strength and good vibes as you continue on this journey. 🙏💜
Coastiejas Katie46 congrats on the 2 year mark and Tri on the 1.5 mark. It really seems like a long time ago, but then not. I transitioned off the Abema (due to side effects) to Ribociclib (more successfully). It is nice to know that there are similar experiences with fatigue for the ribo and body aches and pains for the letrozole. I will be heading back to work soon - how have you been going Katie46 and any others with stamina for work? This year I had ovaries and fallopian tubes out, went to the ALERT program at Macquarie University for Lymphoedema - was a very valuable experience and one I would recommend. On the whole life is good and I appreciate each day!🤩
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.
That’s fantasticCoastiejas - the fatigue you’re experiencing sounds unwelcome, all power to you …here’s to your continuing restoration, sending positive energy and vibes.
Hello everyone, I'm 2 years post diagnosis and just got my 2nd clear mammogram.
Life is almost back to normal, I have some niggling side effects from the medication, but nothing that really impacts my day to day life. I think the muscle aches are settling down. My dry eyes drive me nuts some days, and I probably own a share in Chemist Warehouse with all the eye drops I buy.
I have 1 year done on abemaciclib. The side effects are manageable, but I'm looking forward to the day I don't need to take it.
I've chosen to have my ovaries removed so I don't need the monthly injections, and a hysterectomy. I have prior non cancerous issues and I'm getting that sorted at the same time, just wait for an appointment.
I hope you are all ok and life is as close to normal as possible.
Katie
Thank you for the wonderful news Katie46 It’s good to get the annual update. I smiled when you mentioned dry eyes, mine are also Very dry and puffy especially if I am working (looking at a screen). I recently increased my workload, carefully as I realise my stamina has been affected, a little, but I enjoy the energy and satisfaction that comes with problem solving and being able to be productive in a work sense.
I am hormone receptor positive for oestrogen so on tablets, the Aromatase Inhibitor (Letrozole) - it’s a “presence” that I have to factor into the day, sore feet and ankles usually the side effects are worse at night. My hair has returned but I notice it’s now finer and with less coverage than previously (used to be ridiculously thick). My toenails are still a bit messy (did anyone get a fungal infection in their toenails?) and I have neuropathy in the feet and fingers. But it’s light years from where I was, so happy days.
It’s now 1.5 years on from the end of my “active” treatment (and nearly 3 years since I was diagnosed). Woot!
Hi Tri and Coastiejas, good to hear you are ok and getting back to normal.
I also have muscle aches from the medication, and regular stretching and keeping active helps a lot. I've noticed recently that it seems to have settled down and eased off a bit, so I'm hoping my body is adjusting to the rapid loss of oestrogen.
I had some peripheral neuropathy in my fingertips, and that is improving with time. My left hand is almost normal again, and my right is 90%, i have a slightly spongy feeling in my fingertips. Luckily it didn't affect my feet.
My hair has come back a bit more wavey/curly pretty much the same colour, and it's pretty thick. It did some alarming shedding a few months ago, but it's settled down again, so I think it's just settling into a shedding pattern again.
My eyebrows are back in good shape, but my eyelashes are a pitiful sight, they are so short and stubby I can hardly see them 😆 I'm hoping when I finish the abemaciclib they might improve a bit.
My toenails and fingernails are ok, but not as strong as they used to be. I keep my nails short and use nail strengthener, and get regular pedicures to keep my toenails in good shape.
Overall I'm feeling almost back to normal.
Hi Ladies
Hope you’re all going well! Quick question... is anyone else addicted to strawberries? I can't stop eating them at the moment...up to a whole punnet a day! Interestingly I read somewhere that they have an anti breast cancer compound in them.... perhaps it's my body trying to heal itself? 🍓 🍓 🍓
Coastiejas I was travelling the other day and was hungry but nothing appealed as I was having an emotional sad type of day. I picked up a punnet of Strawberries and halfway through I realised I was emotionally feeling great and was singing in the car. They are now my go-to if I feel down.
Haha hello Coastiejas I love strawberries too and eat them most days, although I have for years. Sooo good when they are in season 🍓🍓 good to hear there is an added bonus to eating them.
Life is almost normal for me. The various common side effects from the abemaciclib and letrozole are manageable so far. Keeping active, stretching and avoiding lactose keeps me on track.
I hope you are doing ok too.
- Hi @GorgyS and others
Funny story for you about that injection...
My first time I was so scared that I grabbed a section of my generous stomach really tightly. So tight that after I removed the needle, it all just squirted back out of me like a fountain. 😂. I looked down "I don't think that went in..."
I did call up my centre about it and they said it was ok but to this day I'm pretty sure nothing went in. 😉
Next time session I let go of my stomach before I pushed the plunger and nothing came back out. Excellent results! 😂
I had a very rough time but nothing went wrong per se. Others seem to go ok and others have reactions, delays etc.
Good luck with your treatment. ❤️. 🫂 - Hello Rona, I think everyone's side effects are different. I did 4 months of 21 day cycles of Docetaxel, Carboplatin and Trastuzumab. I had several different side effects, worst being the not sleeping because of the steroids I was taking Days 1 to 4. Then my mood dropped dramatically days 6-10. After that I was okay. But I am now on my adjuvant chemo (post surgery), and find that the worst long lasting side effects (since the July to November chemo) are peripheral neuropathy.
My fingers and toes are tingly and numb most of the time. I find it hard to turn the page of a book, do up buttons on a shirt, open plastic packaging, and I drop crockery all the time and break it. For my feet, it feels like I'm walking on talcum powder, or soft sand that is constantly shifting underfoot. I absolutely cannot stand the feeling of having my feet on carpet or on the tiles. As soon as I get up in the morning, I put on my Big W thongs which have a tiny little dented pattern on the upside and they help me walk. I have also been given some Homyped massage sandals which are tough on the feet at first, but really do the job. You have to wear them in.
My doctor told me some people never return to normal after peripheral neuropathy and this would be really sad if that were the case for me. So I exercise every day if I can, including yoga, swimming and going to the gym. I feel it helps alot with the neuropathy and my mental health.
I take Lyrica for the peripheral neuropathy and that helps too. Also paracetamol, 8 a day.
Also tiredness. By the last 3 cycles (I did 6 cycles before surgery and am doing 17 cycles post surgery), I could not work a full day, found it hard to fill in ANY forms online or read anything online and my focus just was not there. It's still the case now.
There is so much support out there if you need it, particularly through Solaris or in WA, Breast Cancer Care WA. My best support is exercise. It gives me so much positive energy.
Best Regards. - Great to have updates thanks @Coastiejas. Hope the wean off the sleeve goes well. Thankfully I haven’t needed a sleeve as soon as my watch and rings start to get tight I get onto the Massaging and get my arm up. Thankfully for me it has never been severe.I have this uncomfortable breast and armpit thing for the swelling there I’ve needed it less and less as time goes on also my bra is fitted so as to reduce swelling room. Summer is the pits though swelling and tingling is worse.Your right re shaving its great plus the reduced armpit sweat. Pty about the hot flush sweats though haven’t found a cure for that one yet. Any tips would be great
- Hi Ladies
Great to hear everyone's updates! I'm going well, working more ( did a full week with travel last week). Still have a fair bit of fatigue unfortunately, if I could just chase it away I'd be dangerous! 😃 . I'm still wearing the attractive lymphoedema sleeve as we had an unsuccessful attempt to wean our of it in the heat.... will try again when it cools down. Having zoladex every 28 days and exemestane. Hot flushes have settled down over the last months which is good, have a script for the veoza but haven't had to take it yet! Still doing my qigong daily and I think it helps with any stiffness and aches and pains (I don't get many).. I'm embracing the chemo curl hair and having short hair, not sure if I'll grow it long again, it's now a cool dusty blonde!
@GorgyS the first zoledronic acid infusion knocked me around for about 2 days, I got the fever about 24hrs after I had it, panadol helped me. I will have it again in April.
@Paris_24 I'm interested to hear about your experience with acupuncture as my oncologist suggested it and said it helps some people....but I'm needle phobic!
@Katie46 I lost my eyelashes but they are back ok now thankfully and I know what you mean about less shaving!
I only have to do one armpit courtesy of the radiation! Also I don't sweat nearly as much as I used to... that's a win! - Hopefully it will be better next time @GorgyS, I've had 2 rounds, and I felt a bit tired for a few days, but that was it.
- I had my first dose of zoledronic acid yesterday. A few hours later, I was knocked down with a high temperature, flu-like symptoms, headache, joint pain, and loss of appetite. On the second day, my temperature was back to normal, but I still feel worn out :(
- @Katie46 the menopause symptoms hit harder straight away - multiple hot flushes, bit of insomnia and needing to pee more. I was prescribed Veoza (not on the PBS, health fund gave some money back, I think it has been out for a year or so) and all symptoms ceased straight up. Amazing really because the hot flushes were constant. My eyelashes are short too and very fine, eyebrows recently did the full change over again think it’s the acupuncture. What a journey and gotta take the bonuses like shaving less 😂
