Side effects

Hi. Hope you are feeling a bit better. I have had 2 weekly sessions so far (first of Carboplatin and paclitaxel, second of just paclitaxel). The 3 days of steroids did keep me buzzing and not sleeping so well but it to wears off as they do. Not had constipation (try eating prunes or pears to hep with that). I have felt dizzy twice but only very briefly and both times on the evening of day 4 but I’ve not passed out. If I have to get up in the morning night I always sit in the side forje bed for a minute clenching and unclenching my toes before I stand up as this helps with blood pressure after lying down. Honestly I’ve thought my side effects have been really light compared to what I feared. My worst one has been my sense of taste changing so everything just tastes a bit meh. I am pretty much operating as normal although a 12 mile walk on Saturday was a bit much and drained me for Sunday. Lesson learned! I am staying positive by remembering that this is killing my unwanted passenger! Xx

Hi Amandas

I am sorry to hear that you have felt so unwell with your first cycle of chemo. 

It would be worth talking to your consultant to see if a tapering dose of steroids would help. I found with the first cycle of carboplatin and paclitaxel I felt awful when the high dose steroids suddenly stopped on day 3. My consultant put me on a tapering dose for the following cycles where I was given the original doses for the first 2 days post chemo and then for the following day it was half and for the 4th day, halved again. It did make a difference. 

It is worth keeping your chemo diary up to date with how you are each day as for me each cycle followed the same pattern. The constipation can be related to ondansetron (the anti sickness medication) It was suggested to me to use dulcolax and that helped. At my first review my consultant looked at my medication and adjusted it. 

Don't forget that you should have a 24 hour phone number for the hospital and it can help to ring and talk things through with one of the chemo nurses. 

I hope the next cycle is easier for you.

Jane

Thank you for your reply. Its reassuring to speak to someone in same similar situation. I will remember your tip about sitting up slowly to help with the lightheadedness. Yes i agree its all to get rid of this dreadful thing. 

Take care 

Hi yes i spoke to specialist nurse today. She told me to keep a diary of side effects and tell consultant i hope they help me not to feel like that next time. My chemotherapy is infusion on the one day followed by 4 tablets for 2 days then one day just antisickness medication. It was after that i plummeted. I am going to take medication to deal with the constipation. Last 2 days ive felt more myself. 

Thank you so much for all your advice. Means a lot to speak to someonecwho knows first hand. 

Take care speak again i hope 

Ive just had my third infusion (paclitaxel only) and all went smoothly apart from a 2 hour delay in the drugs arriving so it’s been a long day. They have said that this time I don’t need the 3 days of steroids so it will be interesting to see what happens - we had got used to me being the Duracell Bunny for 3 days so we will have to see if that changes. I’d prefer not to take steroids if I don’t need them so I’m hoping for minimal impact. x

Hi i will definately tell the cinsultant of my side effects. Im trying to go for short walks each day as i feel a bit unsteady on my feet and increase distance then as i feel stronger. I havent been eating much but i am trying now to have breakfast lunch and evening meal with little snacks. I had a good day yesterday apart from a bit of a scratchy throat but helpline reassured me i was fine to gargle with salt water as nothing indicated any infection. I get so anxious and specialist nurse is organising reflexology for me on my next chemotherapy appointment. 

I feel your anxiety - I describe mine as having a PHhD in overthinking and catastrophising!! I always feel a bit guilty about ringing the helpline, but I am forcing myself to do so for every little thing that feels 'off' and they always reassure me that it's best to call, and they've always said everything is fine, or to just to mention to the oncologist when I next see her. Unfortunately I still have the appetite of a very large horse, but everything tastes dull, so eating isn't so much of a pleasure. I think you need to just eat whatever you fancy and not worry about what it is. Mindless snacking whilst watching trash TV may be worth a try.  I'm finding that sour and salty things are what taste best for me. I'm snacking on cashews and eating lots of fish and spinach, which I like, and which I know is good for me.  I'm maintaining my weight, which is, I suppose, good (even though it's a bit high for me). And I'm managing to walk a lot. I walk the 2 miles to my treatment each week but do allow hubby to pick me up after. And most days I manage to get close to or over my 10k steps. I am working on the premise of 'I'll carry on as normal until I can't'.

One weird thing that I find is that I can taste the chemo when it is being infused. Sweet chilli crisps are what I've found help to mask that metallic taste, and I'm not normally a crisp eater.

Hope you enjoy the reflexology. 

Have you come across the charity Look Good Feel Better? If not, give it a search. They do fabulous workshops on haircare, head coverings, nails, make up etc with some awesome giveaways at their F2F workshops. 

Sarah x

Hi oh thanks so much for your message im glad im not the only one lol. Its horrendous if theres something to worry about i worry. Yes me and husband said were going to have whatever we fancy from now on instead of thinking should i hve that is it healthy for me. 

Ive got metalic taste and heartburn has started this afternoon. I know why ive only forhotten to take my omeprazol since starting chemotherapy im not sure how i managed that. I am going to contact my SN now or 24 hr helpline to check if its ok to redtart them from this evening to relieve it.

I hope reflexology is good too i will let you know. Look forward to chatting to you again.take care 

Amanda x