[fragileukParticipant]

A relative has just been diagnosed last week. She was admitted to hospital by ambulance – I called it after a month of her repetedly going to GP in more and more pain, and finialy unable to even stand up because of severe back pain – 5 fractures were detected. Xrays have also shown problems in her pelvis, shoulder and thigh. Her bloods showed severe anemia thus an immediate transfusion has been undertaken.

She started chemo today (cyclophosphamide, thalidomide and steriods anlong with weekly biophosphonate infusions). She is also on morphine & tremadol but these are not really cutting it even at high doses. She is still to have an MIR later this week (requires transfer to diff hospital) My biggest concerns are

1. how long does it take for the pain to subside.

2.Also she is not really eating (and hasn't for about a month, her stomach is now very destended – is this usual.

3.Now for the big question she lives on her own quite a distance from family, is this something that people on this treatment would manage to continue to do. We can visit her at weekends (and during the week in an emergency) but it involves a ferry journey so we are not on hand to get to her quickly if she need us- and that worries me – a lot.
Between health problems with other family members (including myself) my childern schooling and my husbands work we are not in a position to go over and stay with her.

Until this happened she was very fit and would go walking trips to remote places- I am hoping that with time she will be able to do some walking again

On a happier note, I do know that this can be sort of beaten. An Aunt of mine had it 19 years ago – She was one of the very first people that underwent and transplant – back then it was a full bone marrow that was done – she was also one of the first to be treated with steriods. When the docs started her treatment, she was given 6 months to live – that plus 19 and a half years!! – no relapse as yet. However, I didn't live near her so didn't know much about what she went through on a daily basis- I don't want to ask her much about it as she never ever talks about it now.

Thus why I am on here.

[meganjaneParticipant]

Hello,

MM is very different for each person so it is hard to say what it will be like for your relative. My husband, Phil, needed a lot of help at the start when he was diagnosed but he had the added complication of operations on both legs to recover from. Since he has recovered from the operations and has been able to stop using the crutches he has been fine (relatively speaking) and has not needed to much help. Phil was originally using morphine and diazepam to control the pain but that was only for about a month, since he has recovered from his operations he has taken an occasional paracetamol but has not needed too much pain medication.

As I said, it is different for each person. The Doctors will prescribe medication to help with the pain but if you are concerned about how your relative will manage at home I would ask at the hospital about what help may be available.

Megan

[eveParticipant]

Hi,
My name is Eve I am a carer.Welcome to the site.
You ask questions,and expect answers with very little information for anyone to give an answer.

From what you are saying the person concerned had severe bone damage which in it,s self brings it,s own problems,as you have an aunt who had Myeloma and is still alive,she should be your first port of call.

I would not advice any person to try to cope with this on there own,

It depend were you live,how good the treatment is,plus the support you have,this is a terminal illness ,age health and mentality play a big part.

I hope this is some help.Eve

[ellenModerator]

Welcome to the discussion forum. I hope you don?t mind me replying to your post. My name is Ellen and I am one of the Myeloma Information Specialist at Myeloma UK. I hope I can help clarify a few things for you.

Pain is a big problem for many myeloma patients. There is much that can be done to treat and manage pain but sometimes it can take a little while to find the most effective pain relief for each individual patient. In most cases, the pain will begin to subside once the treatment brings the myeloma is under control. In addition, the bisphosphonate your relative is on not only helps to protect their bones but can often help relieve pain caused by the bone damage from the myeloma.

Sometimes, radiotherapy for localised areas of bone can help to relieve bone pain especially if the painkillers are not working. It is not uncommon for myeloma patients to be referred to a pain specialist or a palliative care expert and is something she should ask her haematologist if her pain continues. We have an Infoguide specifically on pain which I can send out to you if you call the Myeloma Infoline on 0800 980 3332 or email me on askthenurse@myeloma.org.uk or you can download it from this site http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infoguides/

A distended stomach is not usual for myeloma patients and it should be seen to by the doctor as soon as possible so that the underlying cause can be treated. This may or may not be the reason for her loss of appetite. Instead of eating three meals a day, she might perhaps prefer to have 6-8 snacks/small meals throughout the day. There are also liquid food supplements she could take and it may be an idea for her to be referred to a dietician.

I?m sorry that your relative lives alone and this is causing you some worry. It is important that her healthcare team are aware of this as it may be possible for her to get some home help. It is important also that your relative has the details of who she can contact if she is worried about anything.

All the best
Ellen

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