hi Stevo
CDT was ok for me had a bit of PN in my feet two outer toes on each foot went very numb but not painful so i could live with that and at night it gave me a good four hours sleep even on the DEX time, doesn't suit everyone but it did me
Keep well;-)
Love Jo x

Well done Stevo

lets hope you have a break after eight or one over the 8! i have had a temporary break from velcade been in hospital with a chest infection temp of 39 and all that, after a few days on IV anti b,s nearly back to normal as for MM Murky Mud Blood disorder from the depths of hell come to mind:-
Keep well love Jo x

hi Phil

sorry you have had a bug 2 years well done keep it up we need good news
Love Jo 🙂

Lesley,
I can't speak for everyone but the Myeloma XI trial is certainly working for me. I was diagnosed just over a year ago, had 6 cycles of RCD by which time there was virtually no sign of myeloma any more, had my SCT in July 2012 and am now in complete remission but taking maintenance treatment, again as part of the trial, with the view to…[Read more]

hi Steveo

my kidneys were working only at 20% when we discussed SCT they still are I was told there was every chance with the chemo that went along with SCT it would probably put me on dialysis I didnt want to take that chance so no more was said hope this helps you
Regards Jo

Hi ANdy
Superstition or not fingers crossed that this treatment is the one for you as you must of read SCT is not now concidered an option by a lot of at least American doctors less is more! SCT was not an option for me either so i am hoping that first CDT which gave me 3yrs6months remission now on Velcade Sub Q hope it works just as long have…[Read more]

Hello Maureen

velcade is not so bad as for dex i take 20mgs twice a week Ians consultant can ajust the dose if needed but its best to try and take the full dose if possible he may be able to tollerate 20mgs
Regards Jo x

Hi Megan and Phil

I've just read this post for the first time and wanted to say Welcome Home Phil. It made me cry reading the post, just because it brought back memories of the journey that Nick and I went through 18 months ago. I remember so well, those first steps outside of the hospital room and what a HUGE achievement it was 🙂

As…[Read more]

hello Maureen

I am on velcade at the moment I have it Sub Q an injection once a week into my stomach on day one 20mgs of Dex and cyclophosphomide 250mgs some people have a higher dose of this but i need a renal dose(damaged kidneys) day 2 another 20mgs Dex this regime isnt so bad and i am coping well with it the only problem seems to be a drop…[Read more]

Hi Stevo

My belly is not very bruised only haveing Sub Q once a week so not so bad
I always take the DEX as early as poss in the morning with brekkie so i do get a bit of sleep at night no sleep if taken later in the day kidneys seem ok but have a real app next week its always like the sword of damacles hanging over me when i go there…[Read more]

Hi Keith

sorry to hear the treatment hasnt worked CDT worked really well for me its a much gentler regime so it may really suit you Thadidomide is a bit of a wonder drug it gave me 3yrs 6month remission and not too many side effects just a bit of Pn which wasnt so bad it also gives you a bit of sleep at night even with the DEX I got at least…[Read more]

Hello Lisa and Mick

Cdt worked for me did feel low at first after treatment but soon recovered i got 3yrs 6months remission no SCt due to kidney damage had MM for 4 years and have just started velcade so be positive things will get better;-)
Love Jox

Hi
Eve
Velcade not so bad if it didnt keep knocking my Hb out 2 units of blood every two weeks bit fed up today as waiting for blood but the clinic forgot to send my sample down until this morning has the cross match done at 2 oclock yesterday!! How is SLim I hope he is doing well and getting stronger and you are getting your lives back together…[Read more]

Hello Deb

welcome and so sorry you have had to join us what a 50th birthday Shock I dont think any of us really get over the shock UCL Is marvellous i am there every three months attenting my local hospital lister in stevenage inbetween UCH is the best as Mathias said 15 mins walk from Kings cross or 10 mins from Euston or the 73 bus which…[Read more]

Hi Wendy

I do hope its only a blip I have been having velcade last two months as my free light chains were rising if my kidneys had been normal they would have waited a bit longer as pp were only 8 but need to protect whats left of my kidneys so if no other damage they may just moniter you for a bit
good luck for Feb
Love Jo x

hello Stevo

Dexitude is the word I am on 20 day one and 2 and side effects most of the following week but when I was on CDT it was 40mgs four days running hell on earth but it worked and i got 3yrs 6months remission so hang on in there i am on velcade sub Q at the moment once a week so i hope i get a good remisssion from it just starting third…[Read more]

Hi Deb,
Welcome to the site and I hope you find it as useful as I did….it got me through the first weeks and months after my diagnosis.
I would echo what Lorraine has said above. It is scary in those early days when even the terminology sounds scary! But it does all get easier. I smouldered for a year, then went onto the Myeloma XI trial where…[Read more]

Well Dia

touching wood and fingers crossed this is the one, you are a surviver i am sure you will get through this you are an inspiration to us all

Big hugs Jo xx

Hi Stevo
CDT is cyclophospomide Dexamethasone and Thalidomide my creatinine
was 500 on collapse i was at about 350 when it was considered but there would have been grave danger of the aggressive chemo fully destoying my kidneys i didnt want to risk it but i am a lot older than you your body
may take it you may need a long discussion with your…[Read more]

Christmas blessings to you mavis

I hope all keeps well for you for a long time to come

Love Jo x