Hi Jo

Lovely to hear from you,I have been thinking about you and wondering what was going on specially with the Damocles falling a little bit.

Thank you for information on Velcade I did not know about the second batch of Velcade only that it can be used again on patients who have responded well first time round,all good news.

How are you Jo??…[Read more]

Just wanted to say good luck to everyone,although it’s a big thing for the individual having this procedure ,ita an every day thing to the staff,expect to be emotional and do not worry if you have an odd accident,nothing they have not seen or done before.

It’s a bit lonely in isolation,so make sure you have home comforts around you,this is the…[Read more]

Dusk if you are a Myeloma person,please think about putting you name plus picture,and explaining your story,because that,s what this site is about,helping people!!!!

Stop trying to scare people,this Myeloma is scare enough,specially for people who do not prefer to know a lot about it,it’s there choice,educate yourself by all means learn as much…[Read more]

Hi. Dusk

Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it…[Read more]

Can I join in this post,as a few on here realise what my husbands position is at present .

I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

The facts concerning treatment,NICE has 3 treatments on Board…[Read more]

Hi Peggy

Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
The problem Slim has is that after 3 recommended…[Read more]

Hi Mandy

You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your…[Read more]

Dear San

I am so sorry for you that your Mum has lost her brave struggle. However, in view of the pain she has been in over the past few months and the repeated infections, I do hope there is some comfort to you in the fact she is, at last, at peace and she hasn’t had to struggle for many more difficult months in a Nursing a Home.

You will have…[Read more]

Hi San

So sorry about your mum,I do not know which is easier knowing it’s going to happen or not.

I hope you and your family find some peace at this sad time,no more pain for your mum,I also hope you were able to spend some time with your mum doing normal things with out the myeloma being up most in your thoughts. Eve

Hi Jeff

Well age and not having SCT explains it.

I also think,we do not take every thing in when it’s not good news,I am sure the consultant will explain if you ask,or see the myeloma nurse who is in charge of the trials,they are usually better at explaining it,in none medical terms.

People can be smouldering under 10 and it’s only when other…[Read more]

Hi David and Andy

Good to see you are still around and doing as well as can be! Are the Myeloma masses outside the bones David,you do not say???,
Glad the PP are right down,how are your bloods with the Revilimid ????.

Have to admit David I am not keen on the new format,my I Pad,makes it difficult to log in,and cannot get the site to remember me…[Read more]

Hi Chris

You are lucky in many ways,because of routine blood test they have caught you early plus SMM,so that’s all good news.

There is no reason why you cannot live a reasonable normal life,I would advice you to ask to join the under 50 as you will find people of your own age!!

What I will recommend is you educate yourself concerning…[Read more]

Hi Deborah

Good luck with the Trial. Hope you find some other fellow travellers out there!

Best wishes.

Mavis

Hi Andy

Happy New Year!

I do hope the new treatment works for you. It has very good write ups which is why NICE has agreed to fund it. I think it is related to Thalidomide, but I might be wrong. You are another front runner for us all.

All blessings.

Mavis

Hi Jeff

I can imagine how you feel not knowing the answer as to why you were taken off the Trial. I have learnt to be more assertive and ask “why?” I also always take a written list of the questions I want answering so I don’t forget. I nearly always see someone different, but I find having my “list” helps them to see I want to understand…[Read more]

Hi Sarah

Welcome from me. I have been having trouble getting on site lately and am only just catching up.

I came into MM the same way as M, but fortunately with no break to complicate things -only the caging in my back. I had a further trauma a year later when I again lost mobility. That’s when I starter on chemotherapy, CDT. Fortunately I…[Read more]

Hi Tina

Also so sorry you have been in hospital. I’ve had a bad cough, but fortunately although I still haven’t got rid of the cough I have been OK apart from that.

Do hope that this apart life is going well for you.

Love.

Mavis x

Hi Andy

Well do you feel,you have had your hand slapped!! Lol

Andy after all these years on this site and your countless experiences of so many,many different chemo,and people with different opinions and approaches!!!

Hope you intend to go out for Sunday lunch and enjoy a pint of real ale,treat it the same way as the BT .lol.

As for…[Read more]

Hi Harmony

I do not know much about counselling as I chose not to take that root,I am a firm believer that unless you have had the same experience how an earth can you help some one,there are very good books on dealing with people who suffer a trauma.

As for telling people or not to tell is a hard one,try not to have regrets about it,people will…[Read more]