Hi Sarah and Henry

Its a bugger these chest problems I seem to have too many and I don't bloomin smoke now??.

Now I understand how Henry feels, we had a councillor at the hospital in hull where I had my SCT I used that and he was pretty good 😀 dint even kn ow I was having it till I started to get a bit weepy 🙁 but Hey it worked 8-)…[Read more]

Hi David

Well that's a shame I could have used your contacts for a discount Ha ha, great hotel group is the Marriott 😀
I bet you make them jump when you go into them lol.

Stay well and hope the weather soon picks up for us all

Tom Onwards and Upwards

Well done David,

That sounds like a series of marathons to me at this stage and I bet you are glad to have had Mo beside you to medicate and guide you with stiff words and the occasional stiff arm.8-)

Any more trips on the horizon… or is rest up and recover for a while the order of the day.:-D

Dai.

Hi Maureen

Welcome, may I first suggest Ellen Myeloma nurse on here can help,send EMail or phone.!!!

I do not know the chemo combination ,so cannot comment, I do know he should not be in pain,but you do not say what combination of tablets he has to help with pain,plus what damage he has in bones or if pain area is we're lesions were,so…[Read more]

Hi Dai

You have a good point with Muk 5!

I asked about it,consultant said Slim had not had Revidimide so did not qualify, Helen has not had Velcade so questionable!!!
But I am making further enquiries

The reason why is when Slim had CDT over a period of six cycles it had no effect , the myeloma increased to 80 percent, now they are…[Read more]

Hi Helen,

Have you asked your consultant about the possibility of MUK5? Is it being operated at your hospital? The chance to get on a Kyprolis trial is worth taking if the chance is there.8-)

Go look see and ask.:-)

Dai.

Eve's question got me thinking and is the reason for me starting this thread. This thread got me thinking deeper. A few days away from it and I have reached my own personal conclusion… that the trials are being treated with far more importance than the individual Myeloma patient, to the short term detriment of all those patients who fall short…[Read more]

Hi Nicki

I am so sorry to hear of your loss, My condolences to you and Adrian's family and friends.
Am sure it wasn't easy for you all and am sure you need answers to the why and hows.

Stay strong

Love Tom x

Hi David
Am pleased you had a great time, and am sure the "My Old Lady" was pleased you done it looks like you had good weather 😎

Dads grave you look like you are lifting it up to have a look inside? great stone. just one Q ?? are you related to the Marriott Hotel chain ??.

Great Photo's David and well done I bet it was hard work at…[Read more]

Hi Maureen

welcome to the site and am sorry to hear about your partner, unfortunately I cant help with this one as all I have had is CTD leading up to a SCT in 2009.

Am sure someone will be along pretty soon and give you the help and advice you need.

Good Luck to you both in the Journey to remission.

Tom Onwards and Upwards

Hi Dai

Well you are doing well and am sure you and Janet are well pleased you can now have and do visits :-D.
Am well sure your gonna crack it this time and to help you my fingers are well crossed 😎 , its good to see you getting a chance and hope that something else is on the use list soon.

Stay Well My Friend and am sure summer is just…[Read more]

Well Dia

I think this is good news if anything it will buy you a bit of time i am glad your nuets are good and the purdah can end I have the velcade subcut once a week much less side effects PN etc after my sixth cycle UCH want me
to have velcade once every two weeks stretching it it out to 9 cycles less agressive they say then thalidomide…[Read more]

Hi Maureen,

I was initially diagnosed with secondary bone cancer, primary unknown by my relatively small local general hospital in North Pembrokeshire. They carried out a number of tests including one for MM. The haematologist who carried out the test said that he would bet his house on it being MM as all the symptoms were those related to MM…[Read more]

Hi Maureen

Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.

Wishing you well and it's good to know you have some support . Love Eve

Dear David

Your posting jogged my memory one we have stayed in the Union Jack Club,did not realise it still existed ,mine was no honey moon, ( dirty weekend) springs to mind,still waiting on honeymoon,Slims not a great one for surprises his excuse is I always find out about them!!! Two a few years ago we spent time looking for Slims fathers…[Read more]

Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .

When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here…[Read more]

Dear Dai

I am so happy for you and Janet,I can almost see that big grin on your face.

Velcade worked well for Slim while he was on it,just tiring going to hospital, not the Velcade waiting hours ,I know your experience of Velcade is different,if you are not having it subcutaneous ,get a hot water bottle,worked wonders for Slim,before…[Read more]

Hi Eve and you all

Eve "Tom you surprise me,I thought you would think doctor know,s best ,learning new things about you,takes something to question a doctor or 2 doctors opinions."

I did and the reason is I knew it wasn't a bruised rib nor a pulled Muscle as I have had both of those many a time 🙁 (rough pubs and a cheeky grin dunt help…[Read more]

Hello Eva

I was trying to say once you have been diagnosed and think there are questions to be answered!! Concerning your treatment leading up to Myeloma being diagnosed ,once you write a letter asking questions, the legal implication kicks in, so your chance of any truthful answers if mistakes have been made is nil. As I said lip service…[Read more]