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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

Have cll and PID

lisa loo
Posted by

Hi my name is Lisa I have CLL had treatment 2011 drug trail FCR+M was diagnosed with PID in 2013 and have iVIG every 3weeks in hospital  . In 2016 told I had relapsed had small nodes enlarge every where and I am on watch and wait  my bloods seem to be ok even though my nodes had enlarge at the moment I am having terrible night sweats and I am now really struggling with reflux which I take meds for but they don’t seem to work , and now if the food is not coming up it’s now fulling out I sometimes don’t even make it to the toilet . This is only happing to me at night . Should I be worried ? I am not getting much sleep  have told my GP who says it because I take so much medication  . I can control my bowel during the day but when I go to bed I lose all control . 

Caroline- Macmillan

Hi Lisa,

Thank you for your question. Poor you, this sounds awful but I don't think that its related to your CLL. It does however, need investigated. You say that you are on lots of medications, and this might well be why you are having problems with reflux. It only takes 5 medications to drastically increase your risk of interaction!  I would suggest that you go back to you GP and ask for a medication review. He will be able to discuss wit you all your medications, why you are taking them and be able to adjust or stop any that are not completely necessary or interact with others. It may be a case of adjusting the times you take certain ones! Or he might refer you onto the GI  team for investigation to find out why the reflux is so bad.

The bowel incontinence definitely needs investigated and your GP can help you there by onward referral. I hope this helps.

Caroline - Macmillan  Information Nurse Specialist

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