First session of carboplatin

[Manchesterlady]

Hi , thought I posted this yesterday, but it seems to have disappeared. Long delays yesterday at Christie’s. got very upset when I got to the chemo ward . Had antisickness tablet (emend) then something else through a drip. Treatment took an hour to go in . Took movicol and have dulcolese in standby . Feel ok this morning.fingers crossed. Any advise please.

[January-2016-UK]

Keep a diary of which days you feel well and when you have diarrhoea or aches, etc as each cycle is likely to be the same. Then you’ll know next cycle which days best to go out for lunch and when you’re more likely to want more rest.

[Janetdickinson in reply to January-2016-UK]

I always had a golden Thursday, followed by fair Friday, followed by downhill weekend... steroids help enormously ( but ps I don't follow their prescription regime any more of two days of 2mg morn and eve) I go for 2 mg am then 1 mg pm as I found i am too wakeful during the night.... then the same next day then 1 mg for Saturday and Sunday, ekes out the up effect a bit more evenly. 😉

Yes yes to the writing stuff down daily . Every end of treatment I summarise and print out a page which I hand a copy to the doc for my hospital file and keep a copy in mine

So easy to forget stuff otherwise....

Yeay, I did 5 th cisplatin treatment this week, and apart from dreadful constipation which released to dire opposite having taken so many docusate and movicol, I actually feel a bit better now....

Sorry about my icon - I need to sort. Take care janet 235 x🌈

[Manchesterlady in reply to January-2016-UK]

Thank you . I thought I had replyd to you but my messages don’t seem to be getting through, would be good to know which days I will feel better on x

[Janetdickinson]

I was there on Wednesday... ( 4 th chemo regime now.... been going off and on over two years...) you always have to be aware that if there is a Bank Holiday Monday, they are one day down and doing a lot of catching up. ( it was bad on Tuesday also for waiting and my bloods / doc appt. ( end of list for that day!) took 5 hours....😳.

Wed started well at 8.30 am. But we didn't get home til 4 ish .... I am on a long treatment of cisplatin with litre saline before and two litre saline (to dilute the harsh treatment) after taking 4-5 hours total - in theory. It's the bits in between waiting - you just have to be patient and take lots of mags, snacks and other distractions to get through it.... the nurses are lovely up there and so hard working . There is also a reflexologist therapist on the Ward most days, you can ask the nurse to see her or be put on her list... I can tell you it's the most divine half an hour float away session...

The first time it is all a bit scary and upsetting - the whole place feels like a space hub to me, but in the end I looked forward to going as I knew it was killing the bad stuff. You will probably feel fine after a couple of sessions but may feel worse after number 3 etc as the effects are cumulative . Don't be scared and always talk to the nurses at the start, they have their little check lists!,

Post from Janet235 ( south Manchester). Somehow I set up a google post as I couldn't get in on my normal route - which has given me a foetus icon!? I need to unpick this and get back to my normal self!

As if... Janet x🌈 ....take care, deep breaths....

[Manchesterlady in reply to Janetdickinson]

Thank you Janet , yes , good discription of it feeling alien . The foot massage sounds good . Did you have to book ? That’s a long time for you to be there . I find it hard to distract myself when I’m there , my whole body just doesn’t want to be there . It’s hard to plan our journey times as the traffic can be horrendous, but I see your from south Manchester so yours won’t be too bad . I’m from saddleworth . I wish you well with your treatment .🌸

[ScardyCat40 in reply to Manchesterlady]

I come across from Salford and during rush hour it can take an hour to get there especially as I get caught up in traffic going into Manchester.

I had carboplatin only for first line. The first few days I would feel fine whilst on the steroids, then I would have about 2-3 duvet days when I would not feel very well. After that I started to pick up.

The side effects are accumulative as well so with each cycle you will notice you are feeling increasingly fatigued.

[Lizz49]

Hello there,

Sorry to hear you’re first treatment was delayed and a bit upsetting, it’s not an easy thing to go through but we have to think it’s necesaary to get our health back on track! I’m having carbo and taxol at the same time and it’s honestly been fine. Other than the hair loss I’ve had no other side effects and am feeling well, I have cycle 3 on Monday so will see how that goes!

You might find once the steroids run out you’ll feel more tired but by day 5 or 6 you’ll pick up and by week 2 feeling better, and certainly by week 3 you’re almost back to your old self. I would say be kind to yourself, rest as much as possible and eat well if you feel like it. I’m juicing twice a day which is a bit of a faff but I feel like I’m getting tons of vitamins which has got to help ☺️

Best wishes and keep us updated,

Liz Xx

[Manchesterlady in reply to Lizz49]

Thank you Liz , so pleased that your treatment is going well with not many side effects, and that you get the best results xx

[ShropshireJo]

Not much to add to the good advice so far but do try to keep well hydrated to help your kidneys get rid of the toxins (and help bowels!). When I managed to drink plenty of water, I felt much better. All the best Jo 🌺🌼🌹🌻🌸