Hi Carol

I had iced lollies and they seemed to work for me, good luck withheld transplant, I had my first on in May 2013 and in November 2013 was told I was in remission. On Monday I was told the cancer was back so remission was only 7 weeks, looks like I have to do it all agains
Anyway, try the iced lollies and as I said before Good Luck ❌❤️❌

Hi Jo and welcome back to the forum, it’s still playing up with me at times not posting half postin and blooming double posting, hope your ok Jo and it’s not too cold for you

Love Tom onwards and upwards xxxx

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]

Hi Jo welcome back. Hope all is good with you

Love Jean x

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]

Hi Judy
Welcome and sorry to hear about your pain with Velcade but am pleased they soon sorted you out. Where are you now in your treatment Judy ??.

Maureen just to let you know am still on the vodka and red wine lol.

Liz Elaine is doing great ta and ye she has hawk eyes ha ha, but am pleased about that as am sure I would miss something out he…[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 Everyone & thank you so much for taking the time to reply.
I was at the hospital today & had a bone marrow extraction (owwww) they let my sister come in with me which definitely helped me. I go back tomorrow morning for a skeletal X-Ray & I have received an appointment at the Christie Centre in Manchester. Just hoping that whatever I choose…[Read more]

I’m sorry you’ve obviously had and are having a bad experience with the NHS, but I can assure you that that’s not always the case.

Fortunately, I was diagnozed very quickly thanks to a brilliant doctor who referred me within 24 hours to a specialist who arranged bloods, x-rays and bmb the same day and I was told I had MM 5 hours later.
My…[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]

Well double post and some missing

Hi Carol
Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

Hi Carol
Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

Thanks you all.

Had first one done today and that consisted of Bloods taken, Zometa infusion,10 iccle Dex tabs, oh and one amaprasil (check spelling lol) and my Subcut Velcade, The Velcade will be given every week, the bloods every three weeks, the Dex and Amaprasil to be taken once a week. jobs a good un.

Chris when my cells were collected in…[Read more]

Good luck today Tom as you set out on the next stage of your journey. I hope everything goes to plan and you are drug free again soon.
Don’t forget to keep on taking your vodka.

Every day is a gift
No matter the weather.

Andy xx

Hi Liz.
My wife is from Grantham and has a house in Nottingham. So we go there quite often. Yes we go to the Nottingham beer festival when I’m fit enough it was a very wet visit in October.

I’m on my third week of my first cycle and as yet no major problems with side effects. Got the usual Dex effects – sleeplessness and moodiness

Every day is…[Read more]