Had 1st chemo last Monday - now 6 days later and still have terrible watery diarrhoea, I feel so weak and miserable. Cant stand it any more.

[BuntyB]

Also around Day 3 had the most excruciating pains in my legs, from my hips down to my ankles - I do suffer with arthritis but this pain is like no other I have ever experienced. Had to go to GP for strong painkillers and she said that the diarrhoea would pass after a few days - how much longer will I have to wait - this is no life at all and I am so miserable. Please help if you can.

[AngelaAbell]

Dear BuntyB

I am so sorry that you are having such a bad time. First time round on chemo is scary enough without having really bad side effects. Have you rung your chemotherapy helpline to check that the symptoms are normal for your particular drug? Or your specialist gynae nurse? It would be worth talking to them.

I am on my third round of chemo in 15 years and for the first time I had really bad diarrhoea this year after the first treatment. I know how you feel - it is really miserable. . When I saw the oncologist prior to my next treatment he gave me some pills to deal with the problem. After it cleared up I realised that it wasn't necessarily a side effect as there was/is a nasty diarrhorea bug going round and I probably came across it when my resistance was very low. So I wished i had checked it out with the helpline rather that suffer 3 weeks of misery unnecessarily. I don't know about the pain, I have never experienced that. Remember to tell your oncologist all your symptoms next time you go for treatment.

Also, if you haven't already done so do ring Ovacome - the helpline is great and the nurse will give good advice. They really are a valuable support.

Hold on in there Bunty. With luck one of the specialists will be able to advise you on how to avoid or minimise the side effects. Many of us out here will be thinking of you and wishing you a better experience next time.

love Angela

[SusanC]

Hello,

My reply is similar to Angela's, you need to talk to someone. My mum aged 71 finished her 7 rounds of Carboplatin a month ago. After round 6 she suffered the same as you but with sickness as well, I advised her to go to her GP, she immediately told Mum that because of her low immune system she had picked up a bug. The doctor gave her an injection and within 24 hrs Mum was so much better. As Angela said it is so easy to put everything down to the chemo, when maybe it is something unrelated.

I do hope you get sorted out soon.

Sue

[trolleydollyuk]

Sorry to hear you are going through all this. I had similar symptoms. The diahorrea was sorted out through stronger medication and I had such severe pains in my legs that the only thing that seemed to help was morphine. In hindsight i now realise that the pain in the legs was probably due to morphine withdrawal as i had surgery before and after chemo. I know the whole thing is extremely frightening, I was there several months ago and was in and out of hospital for the first couple of cycles, i learnt with time that there is so much help out there but you have to ask and make sure you keep your oncologist informed of what is going on as everyone reacts differently. On a positive note it did get easier every tie i had a treatment and i am now cancer free, As hard as i know it is try and remain positive, eat healthy and keep your fluid intake up. You will have days that will be very low but there is light at the end of the tunnel. My prognosis after my first operation was terrible and then i had such a severe reaction to one of the chemo drugs that i never thought i would make it to this year but here i am almost back to normal. I wish you all the best, sending lots of positive vibes your way xxx

[MargaretJ]

Dear Buntyb

Sorry to hear you are having such a bad time. i was diagnosed 2 years ago in Sept. My problem has, mainly, been constipation and, believe me if diarrhoea makes one miserable (which it does) then constipation has been worse. I have had to have the district nurse out with her equivalent of dynarod to clear the blockage. i manage both with loperidone, given to control diarrhoea while I was on the ICON6 trial and Movicol to manage the constipation. Combine this with a healthy diet and I seem to be doing well. I too get joint pains in my hips, sciatica ty pe pains down my legs and really bad back ache. I do not take pain relief if I can avoid it as I know the time will come when I really need it. I find that a hot water bottle helps at night and thermal patches on my lower back are a wonderful relief during the day. Luckily my arthritis is in my shoulder & wrist.

I have no qualms about ringing my district nurse and my McMillan nurse for help when I need it and the district nurses are more than willing to give help and support.

When i feel really miserable I sit myself down and give myself a good talking to. I remind myself that the alternative is unthinkable and my friends who have MND and Parkinsons are more constrained than I and have years of gradual deterioration to look forward to. Then I go out and do something to take my mind off things. Tena lady cope with the odd accident - I always carry spares - I am now gearing up for my next chemo - 2 nights in hospital - and after effects of steroids (problems with blood sugar control, lack of sleep) and water logging (I get 5 litres I/V and drink 5 over the 24 hour delivery period) I pee 500 ml per 30 minutes.

Good luck! Stare misery in the face and tell it to bugger off and bother someone else!

I am 71 in a month by the way and I know my cancer is not curable.

[MargaretJ]

Ps I have metaclopramide for the sickness as I became allergic to carboplatin and I am now on Cisplatin, I also find ginger and lemon tea and a couple of rich tea or digestive biscuits before I get out of bed help to control the feelings of nausea!

[BuntyB]

Bless your hearts for finding the time to reply to my desperate message the other day - I was having a very black day. After reading some of your responses I feel very guilty for complaining about my problems as other people have even more difficult symptoms. I think my diarrhoea is dying down a bit now, still not gone but not as frequent and although it is one week today since the first chemo, I think I will be back to my GP tomorrow for advice.

[MargaretJ]

Where do you live Bunty? You do not seem to have as much support as I get from the team in Leeds. Don't feel guilty about feeling miserable it is how you feel! For you your misery is 100% and it is no consolation that others may be worse. I just find it helps me to give myself a good talking to but then I am a control freak and I find it distracts me from symptoms and i cannot bear my body getting the better of me. I've left my body to my old University and I'm convinced that as the students are dissecting me I'll sit up and say "are you sure you are doing this right?". I always was a bossy cow!

[AngelaAbell]

i endorse the ginger and lemon tea suggestion. Ginger was suggested by the Ovacome advice line and ever since i discovered the tea i become addicted. Does seem to help mild discomfort like nausea or lack of appetite. It maybe all in the mind but worth a try.