Side effects?

Hi all

I’m due to start chemo next week - paclitaxel and carboplatin weekly for 6 weeks. Then 5 weeks Cisplatin once a week and radiotherapy Monday to Friday. Then brachy (praying that by the time I get there, it’s gone. Or I only need one blast and get me out rather than a week of having to keep still - I have tomophobia and being an inpatient and not being able to move will be really mentally hard for me).

I’m using a cold cap for the first six weeks of chemo to hopefully save most of my hair.

Have other women had this? What side effects did you have? I’m starting to panic I’m going to be deathly ill (as everyone keeps telling me I’m going to feel crap and suffer), I wish I could escape my own body! Tiredness I can deal with, but I wondered if any of the other possible side effects were common in other women.

Hi @Frenchie
I just finished 5 weeks of cisplatin and radiation Mon to Fri. I did not do the other chemos that you mentioned in the first line. I am 41 yrs old and 65 kgs. No kids. Honestly, my experience with Cisplatin is that I was very sleepy, drowsy and body felt like it weighs a ton. However, I was capable of going for every radiation appointment. Do some light work during the day, and watch shows. No pain just wanting to sleep always. I would say its doable. I know everybody’s experience is different. Please reach out with any questions and I will answer.

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Thank you. I’m really, really frightened of it all. I feel a constant sense of panic. I’ve got 2 kids so I’m really scared I’m going to be useless with them.

Hey @Frenchie!

So again from my experience. Out of the 7 days in a week, you feel really lethargic maybe 2 and half days.
For example I would get my chemo on Tuesdays. Tuesday eve I would feel just a little sleepy. Wednesday I would feel great because they give you steroids during your chemo and the steroids keep you peppy and very active. I would start to feel the real effects of chemo Thursday morning - body heavy, slight ache, very tired and wanting to sleep all day and night. But I would still be able to walk up to radiation, eat , do light work. By Saturday I would be feeling better. So I guess what I am trying to say is that you don’t suffer all 7 days in a week. I did have my sister living with me and cooking for me and doing groceries etc. Do you have a friend or a family member who can move in with you for meal preparation and maybe help with the kids?

Did they make you have a port or a picc? I’m really hoping they won’t make me.

I can deal with tiredness. I’m hoping the first six weeks of chemo aren’t as awful as they say they are.

They did offer a port but I refused. I had 5 rounds of chemo and decided Ill just bear the pricks. I was exactly in your place. I was imagining the worst but to me it was like having a very severe flu. Like when you just wanna rest and sleep all the time. As long as you have some help assisting yiu, you can just sleep and rest it out.

My husband is going to do everything he can. He already is to be fair.
I’m really hoping to get through without a port. But the extra 6 weeks has made them start to try and push one on me when I reeeeeally don’t want to. However, it will be this 6 and then my consultant said it’s unlikely I’ll get through all 5 Cisplatin because of the hearing loss. He said most women make 3/4. So I am hoping that my veins will hold up for those 10 weeks. If it’s once a week, surely they’ll be able to do it.

May I ask what stage of cervical cancer are you at? Mine was 3C1 and I just got the cisplatin and radiation and 2 brachytherapy coming up.

Its really good news that ur hubby is taking over. I am not too sure about the effect of the other two chemos on you. I can only talk about cisplatin. Ans mine was a very small doze of cisplatin to just enhance the effect of radiation.

Just get ur fav books in line, netflix and a cozy blanket. Work as less as possible. A lot odf sleep and rest will definitely help you a lot.

I am 3c1 too. Apparently this is very new. So I have to have this first, then the chemorads and then brachy (which I can’t even get in to - it keeps me up at night).
I was hoping to be able to work still, for some normality but I’m not sure anymore.

I see! At least you have ur hubby helping you out!

Hi i had exactly the same treatment as your getting. Please ask as many questions as you need to. I finished treatment the middle of march.

Did you find you got many side effects from the chemo? The first bit particularly

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The paclitaxel didn’t agree with me i came over in a very hot flush felt faint. They stopped it immediately gave me a high dose of antihistamines & restarted it at a slower rate. This happened my first 2 sedsions then kept it at the slower rate. Wednesdays were my chemo day thursdays Fridays felt brilliant no side affects by Saturdays i was so tired. I slept on & off Saturdays sundays mondays & tuesdays. I felt sickly but never sick took anti sickness regardless xx If iv missed anything or would like to ask anything else please do xx

Thank you. Mine are Wednesdays too. I’m so frightened it’s going to make me really ill. I have two small children. Did they make you have a port? I’ve said I don’t want one if I can make it without. My oncologist said I’d likely not make all the Cisplatin because of the hearing loss so I just need my arms to be able to deal with up to 10 goes. Possibly less.
Did you go straight in to radio/chemo and did you need to do brachy too?

Hi,
I’m just about to do my 6th carbo/pac and I found the first one the hardest and after that my body seems to have adapted a bit. I’ve got a 4yr old and find that the day after I’m a bit zombie so my mum has her (husband currently overseas for another 2 weeks) and then I find it easier if we have something like a soft play/play date where there’s less input required. Monday I’m usually more or less back to normal but a bit jaded.
Everyone’s body reacts differently though so it’s impossible to predict. Just a case of suck it and see.

Thank you so much for your reply. I was meant to have my first one today but they called me and said that there was a problem with the machine that makes the drug and they could no longer do it. I was absolutely devastated, I’m absolutely terrified of it all and I spent all morning psyching myself up, drinking loads, sitting under blankets with a heat pads to help my veins (I’m desperate not to have a port - I have tomophobia and I’m frightened of it being stuck in me). I’m really praying it happens tomorrow, and I hope I’m not struggling too much as I’ve got two little ones who need me. My husband is being brilliant but I don’t want them all to suffer looking after me.

Oh I’m sorry that happened and hope tomorrow goes smoothly! I was so nervous before my first one and had a bit of a cry about it all while I was there.

They don’t usually put a port in because most people do ok with it going via a cannula and the treatment regime is more short sharp shock for cervical cancer whereas others are inset a longer time frame. My veins refused entry after the 3rd chemo and so I’ve actually had a tivad port put in and omg it’s so much easier! In my hospital they put it in under a local which is fairly brutal so I wouldn’t recommend that unless you’re completely sure you want it. There are other options like the picc line which might be easier? It also has the advantage of can just be taken out the same day treatment is finished.

My chemo day is Friday which is annoying as it means I’m tired over the weekend for my 4yr old but it’s all workable. Don’t forget that this is (hopefully) just 3 months of madness and then it will be a blip in the rear view mirror - so let people help and don’t feel like you’re being a burden. Xx

By the way the I’m using the cold cap and I still have most of my hair - I’d say about 90%. I did it because I didn’t wanted to normalise things for my daughter. However, I’ve had lots of chats with her about treatment and things and told her the medicine is so strong it might make my hair fall out and that I’m hoping it didn’t because I might have a head shaped line a knobbly potato and made her laugh about it and I think we’re all feeling a bit more relaxed and ok about it now.
Ps I don’t know if you use Facebook but there’s a fairly active cervical cancer UK group which might also be helpful.

Oh that’s all really positive. I’m terrified of having a port so I’m really praying I don’t need one. I’ve also had to explain to my daughter that I might lose my hair and she asked me to get a pink wig!! I did join that Facebook group but it made my anxiety soooo much worse so I had to leave it. Here’s hoping they turn up today. I just want to start counting down the weeks. Although I’m really desperately hoping that brachy isn’t a full week like they said because I’m already traumatised enough and brachy is my absolute worst nightmare.

Hiya sorry ur in this club. I had all of the treatment exactly the same as you. I’m not going to dress it up,chemo was ok for the first 2,soon as i got over the pain,tiedness and sickness i had to go and do the next one and so on til that finished.
(6 times) Radiotherapy was a breeze compared to chemo,time flew by,only tied,but still knocked out by the chemo. The brachy was the worst,so paiful when it was over,very painful to pee,took bout 2 weeks to recover form that. I was in hospital for a week,didn’t really notice being in there cos i was out of it all the time. Having said all that i’m glad i took all the treatment they offered me. I’m now clear and have been for nearly 3 years. I’m still in recovery cos of some side effects,groin pain which doesn’t seem to be getting much better,but a small price to pay to be clear of cancer
Good luck with everything,it will soon be over and you can get on with the rest of ur life
Xxxxxx

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