My Dad (78y) has CMML which has transformed into 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? Thank you
Hi Hsmay and a warm welcome to the Macmillan Community but I am sorry to hear about your dad’s AML diagnosis.
I am Mike and I help out around our blood cancer groups.
Having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' treatment journey, be it as a patient or caregiver can help a lot.
This New to Community area is like our reception desk where we try and link you in with the best areas in the community. The community is actually divided into dedicated Support Groups (Discussion Rooms)…… and I can see that you have already found and joined our dedicated…….
……. support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
Do copy the text from your post and jump over the the AML group and put up a post as this will help you connect with others.
I will keep an eye open for you ((hugs))
