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]

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]

My dear Bridget

I am gutted at your latest post – missed earlier because of grand childrens visit. (A great but exausting few days!)

What to say? Your positive approach must stand you in good stead and I will be praying for a miracle.

Enjoy these days of no infusions! I'm so glad you've got a supportive family around you. Will think of…[Read more]

Hi Tina

How I sympathise with you over water intake. I know it's so important to me, but I really struggle with it. I hate our tap water (and feel guilty about it!) I have to drinl squash which my son-in-law says are full of carcigens! Your post reminded me I must try harder!!!

Best wishes.

Mavis

Hi Dai

Glad you have at last got…[Read more]

Hi Chris

Good to hear from you. Glad PP levels are going down steadily.

What lovely news about your forthcoming wedding. I'm sure it will be a very special day and brting some well needed normality into your life to put against the invsion of the dreaded MM.

I'm not going to put any bets on you not getting to pension age though! You…[Read more]

Hi Jacqueline

So sorry that your Father has this rare development of myeloma.

I send you my love and prayers.

Mavis

Hi Gemma

Welcome from me too. It is veru generous of you to be willing to share your experiences, and your Dad's, after what have obviously been four difficult years.

One thing I would be interested in is, how was your Dad diagnosed? From all the complications your Dad suffered I presume he was at a late stage when he was diagnosed?

All…[Read more]

Hi Terry

Welcome from across the pond! I enjoy visiting the Myeloma Beacon site. It is interesting that there are differences between treatment regimes here and in US.

Do hope your smouldering state lasts for many years. I think that the Trial you are on will be very helpful for people who are diagnosed early.

All best wishes.

Mavis

Hi Dai

I realise how gutted you must feel for not getting on the Trial. Yhere have been some good reports of Revlamid as a maintenance drug. I do hope that you are surprised at how well you do on this regime. Eventually, if you need it, maybe the Carfilzomid will be available all tested and dose adjusted.

Hope those PP levels remain very…[Read more]

Hi Bridget

Put it down to a senior moment!!!!! I just read the date on your post. I'm sure there have been some later ones in this category. Wonder what happened to them?

Still, good wishes anyway!

MAVIS XXX

Hi Bridget

How like you to be focussung on others when you have so much to cope with -including supporting yur own daughter. I do have to say I didn't see anything in our local paper about CF Week, but do hope it has been generally successful.

Your daughter has obviously inherited your inner strength.

How is your grandson? MY two arrive…[Read more]

Hi Eve

So glad that at last there is good news. Do hope everything goes smoothly until the STC.

Maybe a last minute cruise will come up. Mind you, after the news today perhaps another kind of holiday might be better! Still, think, after SCT and recovery, there will be so much time for lovely holidays.

Lots of love to you both.

Mavis x

Hi Dave

Interested by your reply. Someone else on the site said their Consultant said PP of 30 before any treatment, if no other problems with blood and kidneys, but when I asked my Consultant, she said she'd rather go by how the PP was rising, i.e. whether steeply or slowly.

Aim of all other treatments is to get PP down to zero for full…[Read more]

Hi Dave

Welcome! It will be encouraging to folk reading your post that you have managed to dance with this dreaded MM successfully for so long.

As your PP levels are so low and you have no other symptoms, why would you be thinking of any treatment at the moment?

I haven't had a SCT. My current PP is 13 and I have no inclination to go…[Read more]