Hi Wendy

What a rotten and difficult time you are having.

The unfortunate thing about MM is it creeps up in very varied ways making diagnosis difficult as you have realised.

Do keep in touch and let us know how things go. This is not a nice disease, but there are worse, AND, we do get through all it’s challenges. I’m sure you will get lots of…[Read more]

Hi Jean

You will never get away with Gushiness at Scrabble!!!! Miss playing but did not like the new format and I tend to use an I Pad,also lack concentration these days,so it’s jigsaw puzzles at the moment,it’s something we can do together.

We now go to the Royal Marsden in Surry,bit of a journey,but easier than going to central London.Started…[Read more]

Hi J

Welcome to the site,if I was you I would put your post in general,as people do not look at carers very often,I post here as I am a carer and at the moment my news is not good and I am aware,some people do not want to hear bad news!!

Now to you J,it’s going to be a hard roller coaster ride no matter what your Dad decides,you will not get…[Read more]

Hi Ozzy

Just a quick one about Claxane ,There is a pill I cannot remember the name,Slim used to be on it,and I think Andy is on it,does the same Job,so might be worth asking consultant about it,Eve

Hi Eve

I don’t know how I missed your post. I’m so sorry to hear about Slim, I know you don’t like gushiness (is that a word – must look at a scrabble dictionary). Just want you to know I’m thinking of you both and hope you get second opinion soon. Slim is a lucky man to have you fighting on his side.

Love and prayers to you both
Love Jean x

Hi Stephen

Well I can only tell you about Slim,after SCT and 100 days BMB,he was told he was in full remission and had 0.00 Myeloma cells in his body !!! It came back before 6 months was out!!!

As you know different people different results!!!

So make the most of your life,lock the Myeloma away,get on with living,Eve

Forgot David ,only had…[Read more]

Hi Carol

Sorry I thought I had replied to you,I have been following your SCT,and must admit you have done really well,must be the desire to get back to Australia !!!!
We have taken up the option of a second opinion and would recommend it to any one,even the experts have different opinions and views,I think it’s because Zmyeloma treatments are…[Read more]

Hi Jan

How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!

Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I…[Read more]

Hi Julie
Your more than welcome as am sure it’s difficult for you as well as you Mom and dad, as for looking back it can’t alter things I/we had made decision that wasn’t right but they were right at the time and that’s all that matters we just dust down and move on it’s not easy being a carer it takes its toll,I was a carer for my wife when she…[Read more]

Hi Julie

Sorry to read your mum has been through a lot, it’s a hard illness to find the one that will kick it into touch, I have had the CTD and SCT all in 2009 four years remission then it kicks back in again so am now on Velcade getting ready for my second SCT at the end of this year all being well,

Am sure they will find the one that will…[Read more]

Aww and here is my bloods, tell me what they look like lol

lol. My blood markers were at the start of Velcade …….
Hb…13.4
WBC..4.9
Plts..2.50
Neuts…2.58

Then after 3lots of Velcade it is……

Hb…128
Wbc…6.0
Plts….191
Nuets….5.4

Not sure where the Dec point should be as I have one middle front and back on these lol.

Hi Andy
Well done on that beer, am sure you have seen my photos on face book from Sunday afternoon I had more than the one started at 12 and went home (was taken home to be fair) at 5.30 ish lol

Enjoy more beer as the weeks go on and I will help you at Scunny lol

Love to you both

Tom onwards and upwards ..

Hi Nicki,

Welcome to you and Kevin. My husband Phil was on the PADIMAC trial at Bart’s. His paraprotein did not reduce enough to delay the SCT so he had his transplant after he completed the six cycles of the dex-dox-Velcade. The trial was looking at delaying the SCT if the initial treatment decreased the pp or light chains by 90%. I know of…[Read more]

Hi David

I’m so delighted to hear your news. I know how excited I was when I got that news. Long may it last for you it couldn’t have happened to a nicer person
I would have said so earlier had I been able to log on to see it. For reference, I managed by resetting my password.

Lots of love.

Mavis

Hi Everyone

As some one who is a carer to my husband,and over a period of 3 years,and going to are local hospital 15 miles plus Kings in London 86 miles,now Royal Marsden in Sutton just on 100 miles,double with return journey I know a fair bit about it.

As Ellen says unless you are on Trials treatment by NICE is adhered too.
If your local…[Read more]

Hey Vicki how did you know I drunk Vodka lol, yes it would be rude to stop at the moment as i feel it has helped in my remission lol.

Tom Onwards and upwards xx

Hi Fiona

Well it is really nice to catch up with you princess lol !!!

It is a hard decision when it comes to an Allo ,if you are on Facebook and go into a private group called UK MYELOMA SUPPORT GROUP, Jet has put up some stuff on Allo plus there is a separate group,!!! So lots of information, Jet had hers over a year ago she only got 5 months…[Read more]

Hi Liz and Kevin

Thank you for your kind words,one of the reasons I posted this was for people to have an incite,because by the time you get to are position,all the upset and fear has gone.i suppose it’s knowing the situation before it’s confirmed,you do not ask,but wait to be told.
The bad thing about that is,since coming off Revilimide the…[Read more]

Morning Eve,

Oh eve I’ve always admired your written word and your sayings ( say it as it is) I must admit I’m rubbish! I’m so sorry to hear slims prognosis and glad your not giving into this ***** MM
And getting a second opinion, I’d certainly do the same if kev were in the same situation, Eve you come across as a very strong and together person…[Read more]

David what great news. Long May it stay there

Love Jean x