[newbie123Participant]

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

[kh0305Moderator]

Hi Newbie123
I’m one of the new volunteers on the discussion forum and just saw your post. I truly hope that your dad is still doing ok on his latest regimen and has seen some improvement since your post.
Your post really resonated with me as I volunteered here for the same reasons that you say about at the end of your post about being the strong one and looking after everyone else but then not having anyone you can really talk to! I am very much in the same position as you and wanted to come on here to let others in same position know they aren’t alone. It is really hard as you try your best to be positive all the time and it can leave you feeling mentally exhausted. My dad was in remission for 7 years and was doing brilliantly. You would never know anything was wrong with him and even when the bone pains returned in late 2020 he managed it so well. He started on his new chemo regimen mid 2021 and we were so positive but then he reacted badly to it. He lost so much weight, he was lighter than me and looked frail and grey-skinned and was back to being wrapped in a blanket, shivering 24/7 and falling asleep throughout the day. It was such a shock to see, I think particularly because he had been doing so well. It was confirmed at the start of this year that his meds weren’t working and he started a new regimen last week so keeping fingers crossed this one does the trick and gets him back to remission again. In terms of coping mechanisms, I’ve just been trying to research the various drugs as much as possible and bombard dad’s consultant with questions so I understand the situation, treatments and options as best I can. I talk to my friends when I’m feeling down as many have had parents/relatives with cancer or illnesses so understand the stresses and can offer me an ear and hug. I also try to get out and do something when I feel overwhelmed and I find it tends to be the days after dads consultations and test results that I feel particularly down so I can at least plan to be doing something those days. Other adhoc days when it catches me I have a good cry and then try to get myself involved in something other than thinking about it like going out with the dogs, doing some exercise or seeing friends. It doesn’t always work but its often when my mind isn’t busy that the feelings catch up with me. I hope you’re doing ok and managed to find coping strategy that worked for you. Take care x

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