[MJC1970Participant]

Hi Everyone.

My mum was diagnosed with MM in December 2011. Since her diagnosis, she had two weeks of chemo together with Velcade, then contracted pneumonia so was hospitalized again. She was then released and is now suffering terribly from peripheral neuropathy to the point where she can't sleep, can't walk, can't hold a pen. 3 months ago, you would never have known there was anything wrong with my mum.

She was admitted to hospital yesterday because her neuropathy is so bad. The hospital released her again the same day. She has no quality of life at the moment – she has tackled the news of her Myeloma with determination and bravery, faced pneumonia head on, but this constant pain is wearing her down. I have read that Vitamins B6 and B12 may help with chemo-induced neuropathy – at the moment she is willing to try anything.

Does anyone have any tips, anything, that I can suggest to her? My mum is in the UK but I live in Canada. I'm coming over to visit in 2 weeks so I'm hoping that this is giving her something to look forward to.

Warm wishes to you all.

Mandy

[DaiCroParticipant]

Hi Mandy,

I'm sorry that your mum is having such a rough time at the start of treatment. Peripheral Neuropathy (PN) can be both debilitating and painful and if your Mum has been hit so bad then the medics should be looking at the possibility of another treatment regime. A couple of years ago the standard frontline treatment was CDT (Cyclophosphomide/Dexamethasone/Thalidomiide) but recently there has been a move towards several novel frontline combinations.

Velcade seems to be the worst harbinger of PN and it sounds like your Mum is intolerant. Most people with PN get Gabapentin as the staple relief drug… Gabapentin aims itself at nerve endings – where most of the effects/pain occurs.

Is your Mum computer literate? If so then get her to sign onto the board… if not then get someone to teach her… this site at this forum is all she needs by way of information and support. This board is an eclectic mix of patients and carers and has proved to be an invaluable place for support and friendship.:-)

With best regards

Dai.

[MJC1970Participant]

Hi Dai

Thank you so much for your quick response – I've emailed my mum with the name of Gabapentin and suggested she discuss this with the hospital and doctor. She really needs some relief from this as she has been positive up to this point, but this is debilitating and she sees no end in sight.

Hopefully she will join the forum – right now she feels very alone – I am hoping that by me taking the first step to introduce myself (and therefore my mum, through me) that she will follow suit.

I hope you are keeping well.

Mandy

[eveParticipant]

Hi Mandy

Welcome to the site,it must be worrying for you being so far away.One of my own daughters is in NZ,so have some knowledge of how helpless she felt although my husband,has me and our other 2 daughters.

I do not think anyone going through Chemo treatment has a good quality of life and many of the side effects,can bring you down to a very low state of mind,what I can say is it will get better,very hard to believe,when you are going through the mill,but every one will tell you the same.

The big thing is to keep your mum positive,as a carer of a man who was very ill last year,and watching things going from bad to worst,it was hard,this year he is in remission,not in the best of health, slowly improving .When you go from a healthy person,to a very sick person and the treatment makes you feel worse,your mother is going to feel very down.she must tell the staff all her symptoms get her to write them down,they can offer all sought of help.
Eve

[tomParticipant]

Hi Mandy

A Warm welcome to the site and hope your Mum's Journy along the road is a good one and your Mum takes it one day at a time, dont expect great things as it takes time to find out what works.

Hope your Mum gets on the site as am sure it will be of a great help to her like it has and is to myself and all the others on here.

Love

Tom "Onwards and Upwards" xxx

[MJC1970Participant]

Hi Eve and Tom

Thank you for your replies – it is hard to believe that 3 months ago, before my mum knew that she had MM, before she started chemo, she was living a normal, active life. At the the moment, she is is confined to an armchair and can't even walk to the toilet. She has an appointment with her consultant on Monday to discuss her next round of chemo and I'm hoping that she can be given something to minimize the PN pain that she is in.

Her mantra today is "this is a small bump in the road, its not permanent" and I told her that we will keep repeating it until she starts to believe it. She is the lowest I have ever seen her – if she she could just get some relief from the PN, I think she could tackle the rest with more determination and fight.

I want to thank you for taking the time to reply to me – I know that everyone has their own story and their own fight to fight, and I am very grateful for your support.

Mandy x

[kaychappersParticipant]

Hi Mandy so sorry to hear about your mums pain and also that she has this horrible illness. Treatment affects people differently, but I can understand her frustration with the PN. I was extremely active before treatment and now I have finished the only thing that is still with me is PN. Gabepentin is what I am on. It takes time to build up in the system, but I found it very effective. It takes the edge off the pain. She can always telephone the Myeloma Nurse, number on the website, she is wonderful. Best wishes. Kay x

[MJC1970Participant]

Thanks for your response, Kay. I am hoping that the hospital will diagnose something for my mum when she has her appointment tomorrow.

I hope you are doing well, despite your PN.

Mandy x

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