Hi Jeff.
Are you having a tough time with the Leicester Royal infirmary? That’s a great shame because I have nothing but praise for the place. I was at the clinic last Thursday for my three monthly check up. The system has recently changed, I am on the myeloma X1 trial, been through SCT, opted for no maintenance drugs. As I am on the trial I…[Read more]

Hi John b.
My cycle of drugs was completed in the September, as our daughter was getting married in early Octobers I had said that no matter what I wanted to be there to give her away. So no drugs no treatment. In fact it was planned to start stem cell collection late nov early dec but I went down with an infection so it was abandoned until mid…[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 Dusk,

I read your original thread and please don’t think people are gunning for you. Reading through the posts I would suggest that people were a little unsure as to what you were saying and when some have had very stresfull times either as a carer or as a sufferer then they possibly felt you were being a bit too negative. Anyway, that is in…[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]

David what great news. Long May it stay there

Love Jean x

Hi Trigger

Well I had a sct in 2009 yes it was a bit of an uphill struggle at times but for me it was a doable and you know your Mum better than most, most people differ in how and what they can and do achieve, My SCT gave me 4 year drug free and that I am grateful for .

I have decided to go down the SCT route again as I think as it worked once…[Read more]

Hi Maureen and Ian

Yes a good bottle of red should be on NHS Scrips lol,and I aint got any side effects to speak of cept the Dex and sleep (lack off) so am going to have my week three of Velcade in Morning plus me ten iccle Dex Mates lol, so nearly just over half way on my first four week cycle and doing good

Enjoy whats left of the week end…[Read more]

Morning Andy and (The ever watchful) Steph

I bet its been a long week for you both ?
I hope the Anti B’s have worked for you and those lovely Neuts have got to a point where you can restart your treatment.

You can always get the beer in and invite those that aint Buggie lol.
Stay well my Friend and Steph stay on watch young Lady

Every Day is…[Read more]

Hi everyone.
Well here I am it’s a week tomorrow errr nearly today now that I was discharged from my little stay as a guest of the wonderful NHS. I’m still feeling ok, though I was feeling ok before I was rushed of to hospital, and I take the last of my antibiotics tomorrow morning.
I’m at the day case unit Monday for blood tests and a decision…[Read more]

That’s great news David.
Let’s hope it stays that way for a long time.

Every days a gift

Andy

Hi David.
Glad they’re on top of your DVT at last. As been pointed out its a well known side effect of Revlimid and all the Thalidomide based drugs. I’ve been on anti coagulants since diagnosis. Must of injected myself over 700 times. I’m now on Rivaroxaban so at least I’m not stabbing myself any more.

Every day is a gift.
Made more pleasant not…[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

Hi Fiona
How are things going!!! Is hubby responding to new treatment,or are you still at watch and wait,because you have not been posting I have lost track a bit,he came out of remission!!!???
Please correct me if I am wrong,the last 6 months have flown by,just when you do not want them too.

You must stop typing and delating response !!! We…[Read more]

Hi David

That’s amazing news and I’m very very pleased for you.
I thought I’d been doing well with 2 years of a “bare trace” reading, but your results are terrific!

Well done. You deserve such good news.

Love
Michele

Hi Carol

Sounds like you are getting there. Hope you get home soon. Re the vaccinations. Frank had his SCT March last year and only started the re vacInation about 8 weeks ago. I kept asking consultant and her reply was “the jury’s out on that one”. Then On one visit she said she had informed our doctor to start the procedure. So far he’s had 3…[Read more]

Hi Trigger

The best thing you can do is ring Ellen on the free number above 9 to 5 weekday she can answer your questions,the reason I say this is some of your mums information plus yours seems in correct,but I could be wrong.????

My husband has had the following treatment CDT CDV and CDR these are the three chemo,s that NICE allow if not on…[Read more]

Hi both john b and carol.
Like both of you I was/am on the myeloma X1 trials.
Today is my one year SCT anniversary! Looking back some of it was a little troublesome, it took a few weeks before I was out and about, walking the dog etc. a year on my pps are at 1.9 I only visit the clinic very three months and opted for no mantainance drugs, so am…[Read more]

Yahoo! Probably the best news you’ve had in ages. Hope you keep it up for a long while yet. Will they do a BMB to confirm?