Hi Charlie
Doing great thanks, I am now on (today) my third cycle of the Velcade and the dex and to be fair it has been a bit strange to me ?? .

The first few weeks after taking my Dex (take that every Monday ) I lost my sleep pattern for four days then Friday hit the preverbal brick wall then normal for the week end to start all over again…[Read more]

Hi Andrew
Well done and yes you should be pleased I had mine done in 2009 and at the start it was 100 but as the months moved on I got the all clear and spot on and am under the impression it’s near the norm, stick with it with a big grin and a skip in your step.

Good luck you are well on the road to remission

Tom onwards and upward x

Aww bless you Frank well I can’t help as yet but just wanted to wish you luck with it Frank I hope someone will pop up and give the advice you both need.

Love Tom xxx

Carol I award you an “A” also well done you, it’s great news, and as for your consultant be like me Carol if he is happy am happy.

From one onwards and upwards to another have a great week

Love Tom onwards and upwards xxxx

Hi Maureen

Thanks for that, yes I am doing pretty good on it the sleep I think has come back to me and near next to normal pattern so that’s good.
Am sure Ian will cope with the Velcade and it’s good to get away before treatment starts pewee went away before I started treatment all booked I a weekend lol.

Good luck to you two and enjoy your…[Read more]

Hi every one
I am now on second cycle and just done third week of that cycle and kast week I lost sleep on Monday as normal but after that I could sleep for England ? Fall asleep on sofa wake up and go to bed it was wayyy too easy to sleep, so let’s see how this week falls.
Went to Scunthorpe General today and talked for a few seconds to a couple…[Read more]

Hi myelomaminx

When you had your growth injections did you get pain in ribs/back and or hips ? Because when I had mine done in 2009 I had bad Iain for three days/nights just prior to the day of collection.

Just wondered, and good luck with the next time

Tom onwards and upwards xx

Hi myelomaminx (love the name ha ha)

So sorry you never got any let alone enough, I am sure some one on thus site was the same as you and it all worked out well.

Good luck with ur and hope next time is better

Tom onwards and upwards xx

Hi Hilitli

Sorry to hear about your Mom,I can’t add to this although I am on the Velcade injection once per week but have just finished my first four week cycle do am sure you understand for me IRS early day.

Good luck to your Mum on her long journey, I hope it’s a smooth one.

Tom onwards and upwards x

Hey Andy
The drink of a Sunday is the norm for me lol.
Pleased you say the bloods are good am hoping my consultant says same when I see him ???
Keep well my friend and enjoy those weekend pints.

Love to you both.

Tom onwards and upwards x

Hi Julie
Your more than welcome as am sure it’s difficult for you as well as you Mom and dad, as for looking back it can’t alter things I/we had made decision that wasn’t right but they were right at the time and that’s all that matters we just dust down and move on it’s not easy being a carer it takes its toll,I was a carer for my wife when she…[Read more]

Hi Julie

Sorry to read your mum has been through a lot, it’s a hard illness to find the one that will kick it into touch, I have had the CTD and SCT all in 2009 four years remission then it kicks back in again so am now on Velcade getting ready for my second SCT at the end of this year all being well,

Am sure they will find the one that will…[Read more]

Aww and here is my bloods, tell me what they look like lol

lol. My blood markers were at the start of Velcade …….
Hb…13.4
WBC..4.9
Plts..2.50
Neuts…2.58

Then after 3lots of Velcade it is……

Hb…128
Wbc…6.0
Plts….191
Nuets….5.4

Not sure where the Dec point should be as I have one middle front and back on these lol.

Hi Andy
Well done on that beer, am sure you have seen my photos on face book from Sunday afternoon I had more than the one started at 12 and went home (was taken home to be fair) at 5.30 ish lol

Enjoy more beer as the weeks go on and I will help you at Scunny lol

Love to you both

Tom onwards and upwards ..

Hei hei from Norway, we have just completed the first cycle of Pomalidomide-velcade-dex. Blood counts have dropped, extreme fatigue, extreme back ache. The blood counts controlled with infusions of platelets and hemoglobin. So far no white cell stimulating. Values down to 0.7 on the neutrophils.

We used paracetamol 1 gm for the back ache and this…[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 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]