Hi eve,
We're just getting ready to go to clinic this morning, kev had 8 cycles velcade/ dex last three were reduced because of PN quite bad in his feet, then was told its not working anymore so went straight onto rev/dex 3rd cycle this week. He's got three vertabrae crumbling and a lot of bone damage to his ribs. Three hospital stays since…[Read more]

Hi liz

Now Slims in remission and off treatment,I find I am posting less,but I like to keep up with what is going on also if you have not looked at the site for awhile you do loose track of what is happening to people,plus all these new people coming on,if they felt anything like
I felt when Slim was first diagnosed,they need lots of boosting…[Read more]

Hi Rob

Just to welcome you to the site and wish you well on your MM journey.

Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on…[Read more]

Hello eve,

Lovely to hear of your NZ trip went well! Hope you get your arm sorted, don't post very much as kevs been in and out of hospital since last November with infections and hopefully got it sorted this time. I know what you mean about all the new and young people posting now its scary and shocking (too young!)

Anyway eve and slim…[Read more]

Hi all,

Kev takes dex 40mg once a week 8.am doesn't sleep the first night grumpy old man for a couple of days,
But then the crash! And we both dread it, I also think it masks a lot of his infections he's been having as they
Appear about the fourth day off dex! It's good in some ways not in others!!

Dexatude! I think it should be in the…[Read more]

Hello Dai,

Sorry just seen your reply, kev is home so I've been busy settling in at home and he'd probably call it fussing!
I agree with what you are saying and after treating kev with what seemed every antibiotic they had I'm hoping they've
Finally beat it. We are in clinic tomorrow so we've got a long list of questions and to begin his…[Read more]

Hi Everyone

Well we made it,and when I learn how to put pictures on here,you might see some.

Has taken a fair time to get over the flight home,at the moment Slim is doing better than me,he,s waiting on consultant for the ok,it's a bit of a worry every 2months wondering if its all ok,as Slim is one of these people that it no longer shows…[Read more]

Hi Maureen

My husband did 6 cycles after CTD failed for him,tolerated it very well,went on to SCT and is now in remission .hope every thing goes well with your husband.

Time soon passes,the worst thing was having to go to the hospital bloods in the morning then home and back again twice a week,use to look forward to the week off.Eve

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]

Tom I got from MMUK I think it was Ellen that I emailed. It got very tattered so I got another one. I find it very useful it has 10 different section, some examples are key myeloma terms, appointments, questions to ask your doctor and for me blood tests results. It gives you what the normal readings on and has a section where you record your…[Read more]

Hello Deb,

We are back at Bart's today for blood tests for Phil, the first since he was released on Wednesday after his SCT. Phil drove us here today as there is no congestion charge on a Saturday and I wouldn't let him go on the tube until we know his blood counts have all recovered. 🙂

Bart's has a hostel that family can stay in right…[Read more]

Hi Paul,

Yes, Phil was in room 3 on ward A – no window but on the quiet side of the ward. 🙂 There is the Internet available on the TVs in the room but Phil never used that. Phil had an iPad that he was able to tether to his smartphone to use the Wifi through the phone. Sometimes the connection wasn't great if too many people were using the…[Read more]

Hi Paul
A warm welcome to the group, it's not an easy task Paul but you can do it, I did it in 2009 bit rough at times but trust me well worth it.

Good Luck in your road to remission.

Tom Onwards and Upwards

Hey Keith
You know am sorry it never worked 🙁 you have been through the mill with it.

I hope the CDT works for you, just to let you know it was my first attack on mm was that and it put me into remission, I hope it works the same for you.

Good Luck with it.

Tom Onwards and Upwards

Hi Lesley

Your more than welcome, now don't forget any question you feel you need to as then fire it in here ????nothing is too much to ask you now you are here will always have an ????to bend.

Love Tom Onwards and Upwards xxx

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 Paul,

My husband Phil was diagnosed in May 2012 at the age of 43 and went through 6 cycles of PAD and as Helen mentioned above I have just documented his stem cell transplant in the Treatment part of this forum (look for Phil's SCT Journey). Phil found the transplant less difficult than he/we had been anticipating. It was not easy and…[Read more]

Hi Wendy,

I too hope this is just a blip Wendy and wow! Training for a triathlon you put me to shame, good for you!
Keep well and take care Wendy I'll keep my fingers crossed for you!

Love liz&kev xx

Hello Dai,

Glad to see your treatment is going well with no hospital for three weeks, so happy writing keep warm!
And bug free. Kevs in hospital this week with pneumonia but over the worse now and hopefully home in a couple of days,
It seems to be getting infection after infection but tbh I think it's the original one that's never really…[Read more]