Coping with chemo side effects

[Kazzh]

Hi all

I'm diagnosed stage 4 clear cell ovarian cancer since 15 Dec 23 & currently struggling so much with chemo side effects & wondering how it has been for others..

I had my 1st chemo 2 Jan (carboplatin paclitaxel and bevacizumab) 8 hour infusion. I didn't know how I would react and although I had many symptoms, it was manageable.

My 2nd chemo was 25 Jan, and this late 10 days has been pretty rough 😕 I've had every side effect going, the more common ones & not so common plus I have shingles and a urine infection. For the first time on my journey I have felt irritable, little patience & fed up with it all.

I know different feelings are to be expected & I should accept how I feel but its really getting me down. I feel like a total wreck physically 😫

Anyone on this combo of chemo experiencing lots of side effects? I have one more round 15 Feb & if my tumour has shrunk enough, surgery will follow in March 🙏

I'm already dreading the next round.

[Nus38]

Hello kazzh

I just wanted to send you words of support. Chemo has to be the hardest physical thing I endured. You can do this, just take one day at a time. Its ok to feel irritable. I thought chemo would kill me, but it didn't. You have the strength in you to endure this.

Kind regards

Nus

[Sybil71]

Hi Kazzh, it will all go away, once you are finished with cycles. Always remind yourself that the side effect are temporary. My first round of chemo (2,5 years ago total of 6 cycles every 3 weeks), i had lost my apetite on 2nd day and it lasted for 2-3 days. I lost my hair because of paclitaxel; and it started to grow back 2-3 months after i’m finished. My second round of chemo this year-Doxil instead of paclitaxel this time- i’m having terrible diarrhea on the 3rd day, lasting for a week and strong pain on the rectum, before and after the toilet; i lost 14 kilos down to 44 kg. It gets more difficult to cope with around your last cycles. again all i’m saying to myself: it will go away… patience; not thinking about it too much and take it as my new normal for a certain period of time is helping me to cope with all these side effects. i wish you all the best with your surgery 🙏

[Lyndy]

Hi Kazzh

It’s a lot: carbo/taxel and bev!

Make sure you report all the side effects to your team because in some circumstances they can reduce the dose for you.

Shingles and a UTI are both horrible, I would certainly be grumpy so don’t be hard on yourself. As others have said side effects do go away but do tell your oncologist how you’re feeling, this is hard!

Best of luck for your next one. Sometimes they can surprise you by being easier than the last one xx

[Ruebacelle]

Wow you have had a bad time of it. It's the chemo side effects that do us in not the cancer. Hope you can find a good management team to help get through this usually requires lots of different things to see which works. Massages by a good pro help keep your body from tying up in knots. Diet helps high lean protein fresh fruit and vegs. Anti anxiety pills but also try reiki. Distractions. Friends. Nature. We are each of us different so you can try to see what works for you. Personally I am a fan of escapist TV serials. Bon courage as we say in france.

[SopSinger]

Let your team know how rough you're feeling. You may need to have the dose reduced, which would help. If you have confirmed shingles they can get you on to an antiviral too. Sending hugs!

[Emcee71]

Hey

I'm only 1 treatment in but I met a lady on the ward who told me that reflexology helped with the neuropathy/pins and needles/tingling if you get that on top of your horrible other side effects. A charity local to me provides it and I will be going to try and see it off. It may well be the last thing you feel able to do with your other symptoms, but just in case anything changes. I hope it does. Sending a hug.

[Leniko]

chemo IS hard. Just keep reminding yourself that’s it’s time limited. Rest, rest, rest. Chemo sucks, but it does work! 🙏❤️

[Kazzh]

Thank you all for your support and suggestions. Just got up to another full on nose bleed and pounding head. I am looking forward to a better week before my next round 15 Feb 🙏 I'm taking on board all you've said and it has helped me to regain my positivity that was draining away.

[Hidden]

Hi Kazzh,

I’m clear cell, I was diagnosed in December 2021 with my first reoccurrence in January 2023. I think I suffered every side effect under the sun during treatment with Pax/Carbo; I just wanted to let you know you will get over them and they will become a distant memory. Just listen to your body and don’t push yourself to hard. If I can help or support you in anyway whatsoever please get in touch xx

Best wishes

Carol x

[Kazzh in reply to Hidden]

Thankyou Carol! I'm on a good week now before round 3 next Thursday. I do think I need to rest more. Did you find that each round got tougher? How many did you have? I'm sorry to hear your cancer returned last year. What treatment did you have then? Have you beaten it again? What stage were you? Sorry so many questions! I have yet to speak to many who have clear cell. Pleasa let me know how you are now, I know we are all different but it may give me an idea of what to expect xx

[Hidden in reply to Kazzh]

Hi Kazzh,

Enjoy your good week and do what you can do ☺️ I was scheduled to have 6 cycles of carbo/taxol. I’d already had my surgery prior to starting chemo and was 1C2 at diagnosis. I reacted to the second taxol infusion because of this taxol was discontinued and I completed to 6 cycles on carbo only. Thankfully I didn’t find it got tougher, probably because I wasn’t having taxol. I was NED on my scan in May 22. When it reoccurred in Jan 23 I was given taxol with lots of medicine to make sure I didn’t react to it and carbo again. The 3 month scan showed it wasn’t working and I was told there was no more to offer me and I was declared platinum resistant.

I got a second opinion which was the best piece of advice I could have been given. I had more surgery in Aug 23 and started on a clinical trial in November. Unfortunately, I developed blood clots which meant I am unable to continue on the trial. I’m not on any treatment at the moment, my oncologist wants to give me time to get over the clots. I have a scan at the end of this month and we’ll have a discussion on what next.

As you have said we are all different, there are some lovely positive stories on here and lots of support. My best piece of advice is to make sure you have 3 monthly reviews once your treatment is completed.

Love and best wishes Carol x

[Leniko]

yes, chemo is miserable but necessary. Try to remind yourself it’s time limited. Rest as much as you can. Anti-depressants may help.