HI everyone,
im new around here but unfortunetly in our lives, cancer is not. Hubby got diagnosed CML in 2014, lost his cousin to AML in 2019, I lost my uncle to brain cancer in 2019 and I got diagnosed with a Neuroendicrine tumour of the appendix in 2019 as well.
I wanted to ask a question specifcally about my husband today though...
does anyone here have much experience with the long term use of Imatinib/Glivec? Hubby was taking Dasatinib from diagnosis until 2017 when it was offered to us to switch so we could have a family (I told him I didn't want him to take such a huge risk but he wanted to do it so he did). He's now been on it for 4 years and his hematologist is trying to get him to take a break from it and he so far doesn't want to (he's been in complete stable remission since 2018). However, I think I'm starting to see why it might be a good idea.... he was still the man I fell in love with and married on the dasatinib but since the Imatinib he's slowly changing... we do have two little ones now (3 and 1) and they are a handful but its not the stressors of parenting thats doing this to him, I'm sure of it... he's so short tempered and every little thing sets him off. LIke just dropping a tissue on the floor makes him angry. When our son was born in 2018 he was very involved and wanted to spend so much time as a family and with our little man and he was loving, affectionate and what I needed mattered. He helpped with breastfeeding and made sure we were happy but as time as gone on I've seen such a huge change... even when our daughter was born he'd come home from work and want space instead of helpping me and being a family... now shes 18 months old and he loathes looking after them entirely. He literally sighs and grumbles and gets uptight about having to watch them or help around the house, he gets grumpy at me when dinner isn't ready yet, he wants to spend all his time shut in his study and not with us. Every so often he comes back, for example on Christmas Eve after the kids went to bed I gave him his Christmas present and he gave me mine which was a beautiful necklace with a heart and infinity symbol and he was his gentle, kind, loving self for a while and then the next day he was gone again, back to being cranky at having to look after the kids and everything else and wanting to do his own thing. He can go days and days without asking me how I am, saying I love you... he no longer offers to help or ask to spend time with me (unless its in the bedroom and even then he can tell me he's keen and still not come to bed before I fall asleep). Just the other day,for the first time since diagnosis I even heard him complain about having leukaemia and being in pain which isn't commonplace for him... I've also noticed an increase of physical side effects as well. He has always had some kind of upset tummy or the runs if he takes his meds on an empty tummy or with any kind of dairy but he's had aching bones, sore necks, loads of headaches, more fatigue than usual and just isn't himself most days... he says his hearring is sometimes cloudy and his ears ring... I don't know how to approach the subject that his treatment might be behind all this and I'm so lost and confused... I have the kids 8-10 hours of the day 8-10 hours on my own whilst also living with the after affects of my right hemicolectomy surgery, ADHD and several other mental health issues so its not easy to keep up on my own.
sorry this is so long... I guess long story short, Im desperate to help my husband feel better and get him to come back to me a bit and I'm feeling a bit sad and sorry for myself... all we've known our entire 7 years of marriage is cancer cancer cancer and I think we're both just sick to death of it...
Thank you x
