How did I miss this post last time I logged on!?!

Many congratulations on your forthcoming wedding, Chris and Lena!!

And my wishes for an uneventful journey towards your SCT and beyond.

Eliz
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Hi Mavis!

I had 6 cycles of CDT prior to my SCT and only really experienced general tiredness during that time – according to my husband I did not get much of the Dex attitude others got, so maybe you will miss out on that "privilege" too!

I have also been lucky with having no pain from bone marrow biopsies, but others have said they always…[Read more]

Hi Nichola

Like everyone else, I am so sorry to hear about your Dad's disappointing response to his treatment and his loss of morale. It is understandable, but if yuo all continue to surround him with love, and show him you don't give in, hopefully he will begin to get some fight back.

I think, sometimes folk do know "when their time…[Read more]

Hi Penny

Have you looked up Allo Transplants on the Myeloma Beacon (USA) Web site. I feel I read quite a lot on there.

You are very brave to be considering this, but I guess, if it presents the best hope…. Jet's comments were very encouraging about the lady who seems to have had a cure.

Do keep us in touch.

Best wishes in your…[Read more]

Hi Kay, Tina, Helen and Dai

Thank you for replying and especially Dai saying it beat his MM back so quickly. I guess I could tolerate four months "in hope"! Common thread seems to be tiredness and dex days!! Typical when I was just wanting to be licenced as an Associate Priest in the parish we have retired to, and hoping to start a Bradford…[Read more]

Hi tina

Aren't we all different. You can't wait to start treatment – I can't delay it long enough!

All best wishes to you. Hope the shoulder heals well, I know they can be tricky.

Love.

Mavis

Hi Terry

Excuse me if I invade your post to reply to Fadia! Hope you are keeping well.

Hi Fadia

You seem to be in a similar position to me in being led by the nose to CDT and not being happy aboout it!! See my posting "Starting CDT." There have been very helpful replies.

I am awaitng full body xrays and a bone marrow biopsy. I will…[Read more]

Hi Paul

IT took me a long time to get Slim to claim benefits,his thinking, was he was retired.he would not get anything.
All though it was costing us a lot of money on petrol, parking,and general things that I would not normally buy,all his clothes were to big for him,plus lots of extra washing,not to mention the carpet that was ruined.

I…[Read more]

Hi Paul glad you got hold of someone at last and I hope it gets sorted quickly for you love Bridget x

Hi Bridget
Spoken to a Mac adviser to today who was very helpful,thanks for the advice.
cheers Paul

Hi Mavis
Lets hope this is just a blip and your BMB and your test comes back negative,Giving your condition you will not go on the intensive pathway,so should have a break in treatment.Slims has injected himself for over 6 months,because of blood clots,so you will soon learn

He did not loose his hair,but it got very thin,and blocked plug…[Read more]

Dear Joe,

So sorry for your loss. Of course all of you will be feeling wretched. It is very early days and the grief is very, very raw, especially as your Dad had such a bad time of it and died so young. It does seem unfair.

Don't beat yourselves up because you feel you can't cope – it is natural at this stage. Is there anyone else who…[Read more]

Dear Tom. Bridget, Lyn and Penny

Thank you all for your encouragement. I knew I could rely on my friends on here! I am awaiting bone marrow biopsy and full bone scan then I will know when I start. Being an optomist I am still hoping I can delay it a bit longer if I drink loads and get my kidney figures down.

You all take care of…[Read more]

Hi Nicola sorry to hear Velcade didnt work for your dad but as Keith said you never can tell Its very possible that Revlimid will work for him even though Velcade didnt Hang in there hopefully he will start to improve with a new treatment plan Dont forget we are here if you need us love Bridget x

Hi Shirley
Just replied to a post on treatment you might be able to answer a few questions???? sorry to put this on you .Eve

Hi Penny

First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost

I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in…[Read more]

Dear Mavis so sad to hear you need to start treatment but hopefully CDT will knock the little blighter back !! I remember feeling exhausted and very weak after the first 2 cycles One bit of advice dont force yourself to do things because you feel you should be able to do them , rest when your body tells you . I didnt lose my hair either One of the…[Read more]

Hi Paul some hospitals have Macmillan advice centres based there pop in and see them If not ask your specialist nurse to refer you to Macmillan for help with benefits Someone will come and see you at home and go through it all with you . I think your GP could also refer you . Let us know how you get on . You will get backdated payments too which…[Read more]

Hi Bridget
How do you get a Mac Benefits advisor?
cheers Paul