Hi Dusk

Can I ask you a nice straight forward question????

Have you started treatment yet??????

You have one thing wrong about me dusk,I am a desperate vulnerable woman,who feels like screaming at the moon,often drive along the road with tears streaming down,for things I’ve loved and lost,just like most people feel on here,that’s how we have…[Read more]

Hi Graham

I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not…[Read more]

Hi Gill

Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well…[Read more]

Hi Eve and Slim I don’t log on very often and I was sorry to hear that Slim had been so unwell, but things seem to have improved a great deal since you changed hospitals.

None of us are oblivious to just how life threatening mm is, and I think the quality of life is paramount.

As you know Stephen died in 2012 aged 57. Up until a few weeks…[Read more]

Hi Dick

Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.

Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most…[Read more]

Hi Dusk

I knew you would come in on this one. Lol

May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,

I…[Read more]

Hi David

Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus…[Read more]

Hi Julie

My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!

So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.

The problem is often the type of Myeloma and how aggressive it is,plus the fact…[Read more]

Hi Jean

Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to…[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 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 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]

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]

Hi Sarah

I don’t post very often but still have a look now and again to see how people are getting on.

It is a very hard decision you are faced with especially as you have years of work ahead of you. My husband was diagnosed in 2008 just after his 53rd birthday I was 5 years older (I always said he was my toy boy but my daughter told me he…[Read more]

Hi David

So glad for you,are the putting you on maintenance ?????

The bloods are good too,just watch out for those horrible DVT,read that e mail,wait till the wife goes out, lol

Seriously glad things are near normal long May it stay that way. Love Eve