Seeking Cisplatin advice: Hello ladies. Im hoping... - My Ovacome

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Seeking Cisplatin advice

ShropshireJo profile image

Hello ladies. Im hoping for some advice/reassurance. I’m currently two thirds through a three weekly regime of six cisplatin and taxol. The fourth dose floored me, left me so tired and weak that I spent five days in bed, only getting up to stagger a couple of paces to the loo. Has anyone else found cisplatin this hard? This is third line chemo for me and half way through the second line, my body rejected carboplatin so changed to cisplatin. I realise that chemo effects are cumulative but this is the first time, I’ve ‘taken to my bed’ for more than a day. Anyone else experience this? Many thanks Jo xx

31 Replies

Hi Jo - I had weekly Cisplatin on the Rotterdam and found I was very sleepy on days 4 - 6 after I came off the 3 days of steroids. I couldn't do much on these days. Bit different from your regime, but my doctors did describe cisplatin as 'brutal'. I couldn't combine it with a social life, that's for sure.

Thanks for that information. Not looking forward to the final two doses but needs must..... I’m glad cisplatin helped to shrink your tumours too.

It is worth it if it does what it is supposed to do! Do you know if you are responding, because that helps motivation? I got told after 4 I was responding as CA125 coming down, and that helped me get through it. My worst fatigue was for the 3 weeks after I stopped - I expected to get over it more quickly, but it takes a while to get it out of your system. I just slept, which is what my body needed. Now I feel like I'm coming back to life. It passes .... xx

Yes, I had a ct scan after three and it showed some tumours had gone and other tumours had reduced so it is a relief to know it’s helping keep the beast at bay. Good to hear you are recovering now.

Good! If it's working that's the motivation...!

Yes! I've just finished a BEP regime (Bleomycin, Etoposide + Cisplatin) and it took everything just to get through. Had two consecutive days of Cisplatin at the start of each 3 weeks, was hospitalised after each of the first two cycles, the third one I barely managed to stay at home (they reduced the cisplatin to 80% which helped). The third one has floored me too - it's about 3 weeks since I had my last Cisplaitin but the fatigue is only now, well, for example, it's taken 3 weeks to get to not being out of breath from having a shower.

With me the problem was nausea. They gave me Aprepitant / Emend and that stopped it to a certain extent. But the Cisplatin affected my hearing and inner ear too (exasperating the nausea). Just keeping fluids in, let alone food, was a battle, hence hospitalisation needed.

You're not on your own x

Thanks for your response. That sounds a very tough regime, my heart goes out to you. I’m lucky that I’ve not actually been sick so far, felt very nauseous though and craved anything with lots of butter for some reason. I was hospitalised after the first one, neutropenia but since then I’ve had to give myself injections for five days post chemo to boost white blood cells and take antibiotics for ten days which has kept me out of hospital. Hope you’ve got something lovely planned for when you are feeling better. xx

Hi Jo We could be twins! I reacted badly to Carboo halfway through second line too and got swopped to Cisplatin. I was told Cisplatin is the forerunner and harsher. I experienced the same as you so know exactly what you are going through. It did the trick though. I wanted to give up after each cycle if I am honest. I actually thought well the ruddy cancer won't kill me but the chemo will. Only advice (if you can call it that) is to ride it out. That's no comfort at all is it? Sending you a gentle hug and a shoulder to cry on xx Kathy xx

Oh Kathy that does help, thank you. I must admit I’ve felt the same but I’m just going to have to grin and bear it. For the final two. At least I’ll be more prepared mentally this time. I found it hard to accept I hadn’t the strength even to do scrambled egg on toast for myself a week after chemo. I feel very lucky though as my son,daughter and sister looked after me. Love Jo xx

Hello ShropshireJo!

I think you are doing really well, it is a harsh drug. If you need to rest or sleep, then you need it. Your body is telling you. You are over half way!

I’m glad to hear that you are being looked after 🙂

Linda xx 💐🌺🌻💐🌺🌻💐🌺🌻

Hi Linda. I appreciate your encouraging words. Will be relieved when the last dose is done. Hope you’re doing ok at the moment. Jo xx

Hi jo, I have had two cisplatin treatments, I am finding it very tiring for the 10 days after treatment. I find I am very warm as well. It is hard but hopefully it will be worth it. We have to stay strong, roll on Dec I will be finished. Take care.

Hi Julia. Thanks for replying. It does help to know how others are coping. Guess we don’t have much choice but to keep on trucking. Hope the rest of your chemo runs smoothly. All the best. xx

I’m on cisplatin and gem. I’ve had two cycles. I’m finding it very very hard. I was hospitalised after the first cisplatin as it made me violently sick. I have an anti sickness delivered through syringe driver now.

I’m having a scan on my kidneys Monday as my kidneys aren’t working too well. My consultant thinks it’s the cisplatin.

I don’t know how many more I’m due to have or can have but I’m finding it very very tough.

Sending lots of love xxxxx

That sounds really tough for you, Suzanne. Let us know what they decide to do to support your kidneys. Sending love and a gentle hug. Jo xxx

My wife is going through the same situation, we had to switch from Carboplatin and Paclistar to Bevetix and Cisplatin, we have completed 6 dose but the last one gave a lot of trouble (Vomit, Dizziness, Body Pain, Weakness) we had to skip this week and scheduled for next in the coming week. She had to take another 12 dose of chemo, we have just completed 6.

Still a lot to go!!

Please pass on my best wishes to your wife. She really is going through the mill at the moment. I knew that cisplatin would be tougher than carboplatin but the reality is worse than I’d imagined.

I am having cisplatin and gem (together with a trial drug). I have only had one dose five days ago and so far I am fine. I did have a little nauseous feeling the next morning but I think that might have been because I was rushing around. I am on a weekly dose though rather than three-weekly. I have been told that cisplatin does make you tired and for sometime after treatment is over.

If you need to the extra sleep don't beat yourself up about it but I do think it's a good idea to be outside even for a little while. Even if it's just to sit in the garden. Fresh air is a marvellous tonic.

Thanks for your helpful advice. Hope your treatment continues to go well. xx

Hi Jo

Like the others and yourself I found cisplatin very hard, it seems to be acknowledged it is a very aggressive drug. The good thing is you know it is working! It didn’t for me so I stopped after 2 cycles but it still took a while to get over it. And all those long days being pumped full of fluids and drinking gallons of water!! But at least that should protect your kidneys.

You are more than halfway so keep the light at the end of the tunnel firmly in sight. Wishing you strength and the best possible result at the end of the course.

Love

Madeline xxx

Thanks Madeline for your kind encouraging words. It makes such a difference to be able to chat with other women who really understand. Love Jo

Hi Jo,

Really sorry to hear how tough the chemo cycles are this time. Wish you a speedy recovery after the last two are done. It's hard but if it's working and there is only a third to face then it's got to be go for it! I have 2 of my cycles left but not on the same regime as yourself.

Lots of hugs Jo

Lizziebee

Thanks for your kind words Lizziebee. I’m feeling much more positive now I really understand how harsh cisplatin can be. All the best for your final two cycles. Love Jo

Hi Jo. Late to the party, sorry, but wanted to let you know that I've spent several days in bed after the later chemo cycles too (and that was only Tax/Carb for me, not even Cisplatin). The first 3 days were bearable, as the steroids propped me up, but from day 4 to about day 6 or 7 I spent most of the day in bed, with an occasional to frequent loo break. You're not alone. Stick with it if you can, especially since it helps.

So hats off to you for bearing up as well as you do, and I hope you'll be ok through the last few cycles. Xx. Maus

Thanks Maus for your supportive words. The replies I’ve received have really helped me to feel more confident about number five next Friday. Hope you’re keeping well and have fully recovered from your boot camp. Jo xx

Hi Jo I had Cisplatin on Thursday my second infusion after being switched over from Carbo. I have never felt so weak and nauseous, I feel as if I’ve lost Friday & Sat.

I am still on steroids but finished Emend yesterday, hopefully I will feel a bit better tomorrow.

Sending you virtual hugs Ellsey xx

Hi Ellsey. I hope you feel better tomorrow. Emend seems to be quite helpful, better than the other anti sickness drugs I’ve been given. I’m learning to listen to my body and not fight the fatigue in the days after chemo. Now I’m over the shock of how much worse I felt after number four, I’m feeling more confident about coping with five and six. Sending you gentle hugs Jo xx

I'm on 3rd line carbo taxol but boy is it different this time. I've felt lousy in chemo in the past but am losing a week this time round and carbo is supposed to be gentler 😒. I'm no longer in pain though so I'm convinced it's working.

Keep going! Xx

You too. It helps when the chemo is working, doesn’t it? Sorry you’re having a hard time. I guess by the time we get to third line, our bodies aren’t as strong as before so it hits us harder. I hope the rest of your chemo runs smoothly.All the best Jo xx

I'm also 3 stone heavier than when I had my first chemo Jo, so as the dosage is titred to your weight I guess I'm having a bigger dose 😲. Xx

In my ignorance I thought I’d lose weight in this situation but I’ve never weighed this much before. I’ve put on a couple of stone since I had my first recurrence. xx

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