[june57Participant]

I was diagnosed with myeloma in 2006 and following chemotherapy had my SCT in sept that year. I have been in remission ever since until 2weeks ago when I was told that the myeloma had returned. I started treatment yesterday with Velcade and steroids. I just wanted to ask anyone who had been or is on Velcade what might I expect ……

[tomParticipant]

Hi June

Sory to hear about your relapse,

had my CTD and Stem Transplant in 2009, but it kicked back in last december.#

I just had my Velcade (Cycle four week three)  I have Velcade, Dex and Zometa.

I am doing great with it albeit tired a lot but I listen to my body and when it tells me to sleep I sleep Ha ha.

I asked my Consultant Dr Jalihal if i could split my dex in half and was given the OK so i now take (just started this week) 5 on a monday morning prior to getting velcade monday aftenoon and will take my other 5 dex on thursday and see how that works out for me??.

Dont ask about levels or score cos I dont know mine ha ha, but am told all going great and am booked in for another BMB 12th may provisionally and hope to move sooner rather than later for another SCT

Stay well June

Tom Onwards and Upwards xxx

[rebeccaRParticipant]

Hi Tom – Is Dr J doing your BMB? he did mine last time and it’s the first time I felt any pain – when Helen did it I never felt anything. See there’s a new man nurse specialist – hope BMBs aren’t a steep learning curve for him/us!

Hi June – I had velcade/dex for 8 cycles and apart from the tiredness which gets worse the longer you’re on it found it any easy treatment with the plus point that you don’t lose your hair tho’ it did get very dry/dull and had to have a bit cut off it to liven it up. Are you going for a 2nd SCT as you seem to have done exceptionally well on your last one? I didn’t find the tiredness debilitating and was exercising throughout but was zonked when my head hit the pillow (considered this a major plus point). Just be careful of neuropathy, I started to feel it moreso on the last 2 cycles and took a while to go.

Good luck, Rebecca

[tomParticipant]

Morning Rebecca

Not sure who will be doing the BMB Dr J did the last one and it was Ok ? Helen done two on me and I had one done in castle hill and that was the worse one .

As for the PN so far its not a problem ? I feel something but nowt to talk or write home about it was worse on my CDT just got rid of it for the darn MM to kick back in again lol.

Stay well

Tom Onwards and upwards xx

 

[Anonymous]

Thalidomide-Velcade combination without steroids is effective for newly diagnosed multiple myeloma patients.

[june57Participant]

Hi Tom

thank you for your response………. I know what you mean  about the tiredness I only had my 2nd injection of Velcade last Thursday and I was completely wiped out for the weekend  although I seem to remember  last time the steroids also bothering me

Hi Rebecca

Many thanks for taking the time to respond ……… I understand I will be having another SCT  and am hoping it will work as well again .   I will be careful of the neuropathy

hope you are both well.

Take care.

June xxx

[jcr2468Participant]

Hi June

I had my SCT in Sept 2011 and relapsed July last year. I went onto Velcade and Dex and coped really well.I had 7 cycles and had no real side effects, even though I don’t feel myself when i’m taking steroids and my partner would probably agree!. I’m now back in “remission” and have been drug free for a couple of months now. I feel better than I have done for a long time – The doctors were keen for me to have another SCT but this has now been put on hold to see how I get on.

I hope you manage OK on the Velcade but listen to your body and if you have to rest then do so.

Take Care

Julie

 

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