Bone myeloma - anyone with experience of this?

[Tumbleweed101]

My dad has just been diagnosed with Bone Myeloma in his pelvis and hip and there is bone damage to these areas. He had a biopsy last week and is having a CT scan on Monday and then we should get results and plan of action on weds.

They have said he will need chemo starting ASAP.

Our problem is he lives alone about 2-3 hours from anyone able to support him. I am a single parent with children in school. My brother already is primary carer for our mum with copd and vision loss and we all live locally to eachother. Dad is the only one elsewhere.

We aren't sure what support routes to go to help him get the care he will need day to day during his treatments. Until now he's been fully healthy and independent but has been struggling about two/three months prior to the diagnosis.

Neither myself or my brother is really is a position to stay down there with him and we are all worrying about what to do next.

My late mum had this in the early 2000's. I was abroad and my siblings lived quite far away from her too. All of us had young children and jobs. Depending on his age and how developed it is there may now be option of stem cell transfer as well as chemo. There was quite a lot of tooing and fro-ing with blood tests at local docs and sometimes at home and then follow up appts at hospital which sometimes were pointless because the results weren't ready . Sometimes she went with a friend or local volunteer taxi service. We tried to coordinate some of our visits near appointments so we could drive her.The main thing is that appointments etc are all joined up - hopefully this is easier now with online and smart phone and key nurse contacts in the oncology unit. Things were hard when she deteriorated as travel to hospital needed more physical support. In the last year she had a live in carer which she funded herself.
Myeloma uk charity may have more up to date info.

It's a shock for everyone- not a very well known cancer
I'm sorry and take care.
Ask anything here and I'll answer if I can.

Contact Age concern. They are really good at giving advice.

If he needs people to go in and offer care age concern will help fill in forms to claim attendance allowance to help pay.
www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-Managing-your-finances-benefits-Infosheet.pdf

If he contacts his GP practice to ask if there is a social prescriber there, or if they can signpost him to a social prescriber service nearby, They can let him know what there is local to him in terms of advice & support.

So hard when you are so far away

Thank you.

It is a bit of a shock and I haven't really taken it in yet. He's our healthy parent, it's mum who has been the worry the last few years with her copd and vision. Dad has always been active so was the last thing we expected. He's been complaining since end of November with pain in lower back and hip but he had a slipped disk many years ago so we assumed it was that flaring up. Cancer was most definitely not expected!

My DF had myeloma. The first treatment he had was thalidomide which didn’t seem to impact him too much. Had to sign something to say he wouldn’t father any children (as both he and DM were in their 70s that was unlikely). He also had a monthly calcium drip to strengthen his bones

My dad had it for 7 years. There are lots of treatments out there and most of them are trial and error tbh. The fact it was caught quick is good news. Im sorry though...it was a massive shock to me too.

My mother and my late FIL had myeloma. My mother's doing fairly well, three and a half years after diagnosis. She found her chemo, at 81, bearable. Although my father was at home when she was diagnosed he was disabled so not able to support with cooking, etc. He died about nine months after she finished treatments which took six months. She hasn't had treatment since then (nearly three years now) but her paraproteins are rising slightly. They are the sign from the regular blood tests that something is amiss.

Fill his freezer with meals from Cook. He may not want to eat but should be encouraged to eat well when he does. The nutritional shakes might be worth getting in too, just to keep calories up. My mother lost quite a bit of weight and she was slim anyway. Encourage him to get a cleaner and gardener.

There's a myeloma Facebook group that is very good. UK Myeloma Support Group. There are lots of people on that group who have had myeloma for years and years. New treatments regularly appear.

To update my thread. Dad had stem cell therapy in the summer and just got the news he's now considered to be in remission which is a relief for all of us 😀

Amazing news!! Here’s to a happy and healthy 2023 😊