Reposted from the carers section of the forum chat as I realised this may be a better section. Thanks in advance!!
Hi everyone,
As you can probably tell I am new to the forums on Myeloma U.K. although not unknown to it at the same time.
My dad has been living with myeloma for the last 11 years now (a now young 78yo!) Early in his diagnosis he underwent a stem cell transplant, went into remission but since has relapsed at least twice in the last decade. He has done multiple different chemo treatments but recently in the last 3 months he has been admitted into hospital 4 times for infections (one chest, and the others unknown).
Of course it isn’t the best time for any person to be in hospital for weeks on end given the pandemic, so it’s been a stressful time. His cancer consultant has determined it was the myeloma and we had started new chemo treatment with a new drug panobinostat alongside fortnightly injections and dexamethasone (technically he was on dex for about 2 years straight!). Despite the new chemo regime he ended up being admitted again into hospital 4 days after starting.
Has anyone had any experience with panobinostat? Or similar trajectory of living with myeloma?
I think the hardest thing I am facing as one of his primary carers (alongside my mum) is seeing how his health has deteriorated over the course of the last 11 years. But specifically, the last 3 months his mobility has really taken a hit, so much so, we’ve installed stairlifts and are getting NHS support in terms of bath seats and toilet grips/guards. If anyone at all has any coping tips when seeing someone they knew to be a strong figure in their lives suddenly become incredibly frail, I’d really appreciate it – I’ve been trying to allow myself time to accept the change but as someone in my family who is seen as the “strong one” / “problem solver” I’ve been consoling others but am struggling myself.
Best wishes to everyone
