My Dad (78y) has Chronic myelomonocytic leukaemia ('CMML') which has transformed into Acute myeloid leukaemia ('AML'). He had a really good 9 months on Gilteritanib with few side effects and great control of his leukaemia. This stopped working fully a few months ago and he is now on a triple treatment which includes the two regimens he has had before (venetoclax and azacytozine) plus Gilteritinib. Cycles are injections and oral tablets every 4 weeks and the first cycle was OK, but 2nd cycle he has a funny turn and they gave antibiotics but he recovered well. Since then his guts have been not great and on the 3rd cycle he has developed uncontrollable diarrhoea. This led to more antibiotics a couple of weeks ago, although stool samples are clear and he is now in back in hospital again trying to get it all under control as it quickly returned when Imodium stopped. I would love some advice on how to manage chemo related diarrhoea and nausea. His treatment is ongoing until failure, we are nearing the end of the road, so quality of life is super important, it’s not a case of getting through treatment as treatment won’t go away. What tips do people have balancing Imodium use and stopping a swing from diarrhoea to constipation, how do you manage the gut pain and gas etc. any eating advice? Currently the Imodium is making him vomit as well so he is refusing to eat. Thank you
Hi @Hsmay and a warm welcome to this very supportive forum.
I’m so sorry to read that your Dad is having such a difficult time.
I can’t offer medical advice. However what I can say that I know from experience that Venetoclax and Azacitidine can have side effects that you describe.
Your Dad’s Haematology Team will be best placed to offer specific advice in relation to his issues so I would encourage you to reach out to them.
In terms of eating maybe plain things. One thing I was advised to have was homemade rice pudding. I also had porridge each morning.
The @BloodCancerUK-SupportTeam will be able to get you access to the wonderful support team.
It may be Tuesday before they pick this up with it being the August Bank Holiday in England.
Hope that helps and best wishes to you and your Dad
Dear @Hsmay
Thank you for your post. I am sorry to read your dad is having such a tough time with his treatment. It is so difficult managing side effects and quality of life whilst ensuring treatment can continues.
Please can I ask if the team have discussed reducing the doses of your dads treatment at all to see if this helps? He should be referred to the dietitian whilst he is in hospital and may also benefit from the seeing the palliative care team who are wonderful at providing advice regarding managing difficult symptoms especially if your dad is now refusing to eat.
In my experience, things to avoid when experiencing diarrhoea and pain include no coffee or fizzy drinks, avoiding a high fibre diet and wind provoking foods such as beans and broccoli. As your dad is vomiting with the Imodium, the team may prescribe anti sickness medications to take. I would also suggest (when he is feeling better) eating small, light meals. in case it is helpful, I have also included our information on the treatment of sickness and vomiting here Sickness and vomiting treatment
I hope you find this helpful and your dad symptoms settle soon.
Kind regards
Fiona (support services nurse)