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 againHsmay and welcome over to this corner of the Community.
As I said in your post in the New to Community I don’t have Acute Myeloid Leukaemia (AML) but I have been on my journey since 1999 when at 43 I was diagnosed with my first rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting…… plus Asbestos and recently Prostate Cancer.
My main treatment….. 750+ hrs chemo, 45 radiotherapy zaps and 2 Allogenic (Donor) Stem Cell Transplants between Oct 2013 and Oct 2015…… and although my treatments were very different (See my story)…… for some chemo related diarrhoea, constipation and nausea are unfortunately a regular issue.
I was told that with regards to balancing diarrhoea and constipation I had to take one sachets of Laxido every day during and between treatments and on the whole this worked well for me resulting in me only having a few diarrhoea/constipation episodes over the 2 years.
As for nausea…… I must have tried every anti-nausea med available ending up back at the same med I started with….. as each treatment journey is individual it is all about working with his clinical team and finding the best way forward.
Around about my 3rd or 4th cycle I developed Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation. Up until this time I was doing ok with eating - even hospital food!! The 3 pack antibiotics I was given for the HP were horrendous and put me in bed for a week and I lived on soup, but I got through it
There are a few active group members so let’s look for then to pick up on your post and get back to you.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing.
Always around to help more or just to chat.
