[AliParticipant]

Firstly, I would like to thank you all. Without you knowing it you have been a great source of information to me and at times a comfort.

My mum was diagnosed with Myeloma in November last year, shes 58. Bolt out of the blue to say the least. We had never heard of Myeloma. She had lost alot of weight, constantly tired, aches and pains and dizziness. After many blood tests etc she got her diagnosis. I was devastated (still am), my mum is my best friend and I dont think I could have felt any worse if I tried.

Mums so brave, shes on the Myeloma X1 trial and has just finished her 5th cycle of Revlamid, Dexamethasone and Cyclophosphamide and I think shes coped really well, despite a few hiccups along the way. Pnuemonia being 1 of them. Her Paraprotein level is now 2, down from 31.5.

Shes now waiting to see the Consultant at City Hospital Nottingham re SCT.

Can anyone offer us (me) any advise, has anyone been treated there?

Seem to have run out of room! lol. Ali x

[adamsp41Participant]

Hi Ali…just a quick hello to say welcome to this little band of jolly fellows and gals…the best advice I can offer is to take one day at a time and ask …ask…ask…when your mum sees her consultant…when you discuss with your family write it down and ask at appointments…my case is almost a carbon copy of your mum's (I am now 58 )and I went through exactly the same treatment as your mum and had my SCT in jan 2010 and at the the moment am in Stringent Complete Remission… so stay strong…. there is light at the end of the tunnel…the drugs your mum has to take may knock her for six…but as my nurse said when having my SCT …you WILL get better..good luck and best wishes to your mum … stay safe…Phil

[tomParticipant]

Hi Ali and Mum

A warm welcome to [u][b]YOUR[/b][/u] group, its your group now so please use it, if you want advise or if you want to moan, have a winge or just shout and (nearly) Cuss about this darn MM :'-(

As for me I am 56 and had my SCT in December 2009 so this is the place to ask and ask away.

Sending you and Mom strength to travel the road that MM has dealt

For the moment Love and Hugs

Tom "Onwards and Upwards" xxx

[eveParticipant]

Hi Ali
Welcome to the site,

I think we all worry when a new hospital,is on the cards,I know I did,,what you have to remember is they are designated units.All new to us,but something they deal with on a day to day bases.

It will seem over whelming at first,but treat it all as another learning curve,it will help if family go with your mum as there is so much to take in,if you want to read up on it before,ask Ellen the nurse to send you a booklet,then at least you will have some insight to the procedure.Eve.

[DaiCroParticipant]

Hi Ali,

I'm Dai… I have been treated at the City Hospital since June 2009… the staff and medics at the City are excellent and the set-up for stem cell harvest and the SCT (in their own Haematology suites are second to none. There are quite a few of us here now who have been down the SCT route, so there is plenty of experience and advice at your beck and call… hopefully your Mum will get her dates fro harvest soon and then we can talk.

Dai.

[AliParticipant]

Hi, thankyou for your warm welcome. I am glad I have found you.
Phil, its fantastic to hear you are in Stringent Complete Remission – long may it continue. Also, its encouraging that you were on the same treatment as my Mum. Do you take any meds now?

Tom, moan, winge and shout? Me? My hubby would tell you I am an expert in those fields – which is partly why I have joined here – to give him a break!

Eve, I have got the booklet and have read it several times (hardly bed time reading and hard to take in!) I am going with Mum and Dad to the appointment armed with my trusty notebook.

Dai, its good to know you have been treated at City. We are lucky that we dont have to travel too far to get there. She goes mid May for the initial appt. Do you know the approx time frame from 1st appt to harvest? I would be most grateful for a talk when we know dates! Will she be able to take a laptop in with her? trivial questions I know but need to be prepared.

Take care, Alison x

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