Hello Elaine

I'm glad you have decided to join this site. I am sure you will fimd it very helpful. You haven't said which treatment you are on. If you share this I am sure there will be folks who can compare notes about side effects with you.

Do be kind to yourself and don't try to do too much while youa re on the chemo.

All best…[Read more]

Hi Caz

Sorry you have had to join this "merry" band. I was interested to hear of your journey thus far as I also was diagnosed following a plasmacytoma and RT. Was the break the thing that heralded your MM progression? Had your paraprotein levels jumped up? I am currently having zometa monthly (starting last month) before that I was on…[Read more]

Dear Eve (and Slim!) and Helen

I'm sure you have both found reservoirs of strength this year that you didn't know you had. Hang in there and enjoy the good times. I remind myself often that "this is the day"!

May there be many more years and may they be good ones.

Mavis

Hi Only me!

Can't offer any suggestions but just wanted to send your Mum my love – she is a very brave lady.

Mavis x

Hi!

Love to all of you on these Trials. Do hope doses continue to be tweecked so thzt side effects are minimised.

And Bridget,

So glad they have finally agreed to the treatment. All best wishes for this next stager. Let's hope it is as successful as the RT.

Much love.

Mavis x

Dear Briget

Thinking of you. Hope all goes well and you get the OK for the drugs soon.
Do hope that pain is still under control and that your holiday lited your spirits as much as mine did.

Love.

Mavis x

Hi david

You raise an interesting question. In another post I point out that I have just been moved from Bonefos to Zometa this month – first infusion this Tuesday (and had shivering and a temperature yesterday! but gather that can happen in the first month).

I had read that it was now NICE's recommendation as first line treatment because…[Read more]

Dear Gina

Do hope your Mum is feeling better soon and the transfusion works a miracle.

Much love to you both.

Mavis

Hi Mari

Sorry that Steve's PP levels are rising, but as the Consultant says, no need to panic – in the scale of things they are still very low. What were they at their highest? More worrying, at this point would be if he was having lots of other complications like infections or kidney damage. Tell him to keep drinking the water!!!

Love…[Read more]

Hi Dai

Agsin you rsise a very important point and one which is very worth our debating – and maybe an article in "Myeloma News". I read an interesting post this morning from Pat – Myeloma Beacon blog, where he poses the first part of a discussion on individualised treatment plans, something very dear to my heart.

You are so right though…[Read more]

Hi Nettie

Having seen the photos I realise you really were mad! What a height for someone scared of them!!!
CONGRATULATIONS! a REAL CASE OF "feel the fear and do it snyway".

Thank you so much for your great fundrasing effort.

Love

Mavis

Dear Gill and Stephen

Like everyone else I am devastated by the prognosis Stephen was given. Who knows what prompted the Consultant to deliver this news. I'm with everyone else on this – who can tell what the outcome will be once Stephen is on Revlimid. If prayers and good wishes can make a diffference you will prove the Consultant…[Read more]

Hi Dai

Just got back from holiday and great to read your upbeat post. Do hope thst 13 days later you still feel that post Velcade high.

All very best wishes for a much better few months.

Mavis

Hi Bridget

So glad to get back from holiday and find your pain is at last under control. I am so pleased for you and hope that you get onto the drug regime soon so that you can go the next stage towards doing the dancing!

Much love

Mavis xxx

Hi Wendy

Good luck with such a difficult decision. I have read quite a lot on the Myeloma Beacon (the American site) It does seem that allo SCTs carry much more of a risk and there seems to be quite a lot of Consultants who question the nessecity of them.

Good luck with your decision.

Mavis

Sorry David said "Ted". It's post holiday lack of concentration!

All the best.

Mavis

Hi Ted

So glad the dreaded MM continues to lay fallow and you have another three months reprieve – may you have many more.

Mavis

Hi Peter

Welcome from me too. Good of you to come on with an upbeat post. Long may your remission last.

Best wishes.

Mavis

Hi Etta

Sorry you have had to join us. All of us can sympathise about the information overload on top of the shock of diagnosis.

I am just starting on Zometa on Tuesday, having taken tablets for my bones so I will let you know how I get on.

Very best wishes for a quick and long remission.

Mavis

Hi Terry

Have been away and just read your post. Like everyone else I am glad you have now found out how to post to this site. I know you will find lots to help you as well as adding to all our knowledge too.

I haven't any experience of Velcade, but can empathise with your efforts to regain your walking ability. I am currently on two…[Read more]