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Severe Diarrhoea

JohnG6489ba57
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Hi All

ok so this is becoming an issue for me as stated before living in Thailand and Thai laws means that treatments could be different.

5 days ago i came off of my first cycle of Capecitabine and when i did WOW did the diarrhoea start. i have been back to the hospital twice but they just say there is no oncologist available on evenings and weekends and so i should wait to see my normal oncologist. as she only works wednesdays thats another 2 days to put up with going to the toilet 10+ times a day.

ok i get that its a side effect and that it varies from person to person, but has anyone else had it this bad? they have given me 2 meds to stop or slow it down but so far (2 days) very little difference. so far in 5 days i have lost nearly 7 kilos in weight.

what can i do? there is no help line here and the oncologists only seem to work monday to friday 8am to 4pm   oh and all treatments have to be paid for.i am covered at my current hospital but if i go to another it is likely to cost me around 2 grand a week or more and i dont have that in spare cash

any advice is always very helpful

  • Hi again  Can you tell us what they’ve given you? Are your stools very loose or is it more number of times a day that you’re having to go? Apologies if ‘too much information’ requested. There is also a Ask the Nurse board in here where you could try posting for advice?

    https://community.macmillan.org.uk/cancer_experiences/ask_the_expert-forum/ask_a_nurse

    I know it’s tempting to cut back on liquids but it’s very important to stay hydrated and keep your electrolytes up so maybe have some diarolyte if you can get hold of it.

    Really hope things start to improve for you soon

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • in reply to Kareno62

    Imodium is all they will give until I see an oncologist. And it's 10+ times a day all very very liquid. 

    Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me 

  • in reply to JohnG6489ba57

    I would insist on speaking to an oncologist today (any oncologist) and tell them how severe the side effects are and your weight loss? Surely they can contact your allocated oncologist in an emergency and I feel that this is warranted in your case? 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • in reply to Kareno62

    Done and all they would do is up my dosage of imodium from 1 every 4 hours to 1 every 3 hours. I know going through cancer and chemo is rough and that there are others worse than me, but I am struggling with the mental side of things because of this. 

    Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me 

  • I’ve had really bad diarrhoea whilst on Lonsurf/Avastin, taking up to 8 Imodium a day with very little effect. The onco prescribed some codeine and that did the job. I have since found that intermittent fasting (16/8) really helps and I don’t have anymore issues at all. 

  • in reply to Cecile

    The problem being codeine in Thailand is illegal even 1 tablet can get you 5 years jail time, but thanks anyway. As for intermittent fasting I have been doing that for 3 years it just seems strange that on the last day of capecitabine this started. I am finding it hard to mentally deal with. 

    Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me 

  • Hi  Just wondered if things had started to improve for you yet? x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • in reply to Kareno62

    Hi thanks for checking in. I am currently in hospital and finally we know the cause and believe it or not but it's not caused by side effects! It seems I have an infection of the stomach lining I am on antibiotics but should be out in 2-3 days and all being well cycle 2 could start next week

    Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me 

  • in reply to JohnG6489ba57

    Oh that is good news?! Hopefully the antibiotics will kick in quickly and then you can continue with your chemo Fingers crossed tone1  

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • in reply to Kareno62

    The antibiotics are already starting to work. Suggested chemo delay only 7-14 days I am fine with that 

    Hi they found the issue and it's not side effect related instead it's an infection of the stomach lining. Should be home in a few days and second cycle hopefully in a week or 2. Thanks for the kind wishes and support it means the world to me 

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