[onlymeParticipant]

Hi guys its only me!!!

Mum has finished her CTD, the trials team pulled her off the treatment as she had plateaud at 12(after 5 months)…. We wondered which way the trials team would send her (A) Velcade or b) transplant)and we finally had call to say that Velcade is next option….

So we starting that tomorrow.. After getting used to last regime wondered how Velcade would affect Mum.. Anybody else been put on Velcade for final hurdle?

Bit down hearted that SCT wasnt next but as with everything else, its a journey of patience!!! So we all going in tomorrow big smiles and confidence that we all ready for Mum to go through next stage…

Hopefully it wont be too long before Velcade kicks in and reduces those bad boys!! (Paraproteins!!)

I for one have certainly learnt a lot on this journey and looking back over the last 6months its been a real eye opener..

Love and best wishes to everyone else out there, hope you are all ok..

Only me!!!
xxx

[RozParticipant]

Hi only me
We have not met on here before. Anyway, Michael my husband went on velcade and then another drug. Velcade is a strong treatment and it never agreed with Michael but it does with others, so maybe it will work on your mum.
This disease is so individual that any response from one person is not always the same with another person.
Try and keep positive, try and get your mum to keep positive too. I know how hard that can be but just try.

Love and all the best
Roz

[brochoParticipant]

Hi onlyme good luck to your mum on the next stage of her mm journey Fingers crossed Velcade will do the trick !!love Bridget x

[tomParticipant]

Hi Onlyme

Good Luck to your Mum on the next course, I cant add anything to this one so far as i had SCT after CTD

Good Luck

Tom "Onwards and Upwards" xx

[beckaParticipant]

Hi Onlyme

2 weeks ago I completed 6 cycles of Velcade which I tolerated well with very positive results. Some neuropatic pain in my hands was a nuisance and fatigue made me an expert on daytime tv but I'm now officially in remission and due to start the SCT process next week.

I know we all can have varying responses to any drug/treatment but I hope Velcade is as good to your Mum as it has been to me.

Becka x

[DebsParticipant]

Hi there.

I have been on the same trial and got randomised for the velcade too. I had about 4 cycles and then was stopped as I've had neuropathy since the beginning but it started to get worse and they wanted to stop. BUT, it has had good results and got my pp down from 28 to 8 (possibly less but they forgot to take the reading last tuesday so I have to wait till I next go in!)

I found velcade harsher than revlimid, and was quite wiped out…often in the week off treatment, which you wouldn't always expect!! But if your mum listens to her body and rests when it tells her, hopefully she will be fine. Just get her to tell them ALL side effects.

I know the feeling about the SCT, despite being pleased to go to velcade as it would get my pp level down, I was slightly gutted not to go to SCT. But now I am and it really isn't that long…..

Good luck to you and your mum
Debs x

[CarolBradley1Participant]

Hi
I had Velcade to get my nasty boy count down for a couple of cycles before my transplant. I coped quite well on it – expect your mum is on it by now and you are finding out for yourselves.

Anyway, good luck to you and your mum – I´m so pleased you have each other.

Very best wishes to you

Carol xxx

[CarolBradley1Participant]

Hi Debs
I wonder if we are both on the same trial Myeloma 11? I have had my transplant and am back on Revlimid now (looking back I think I tolerate this better than I did the Velcade that I had for a couple of cycles prior to the transplant.
Anyway, hope the side effects are wearing off – I do get tingly feet and hands but not as badly as before so am really lucky. It´s uncomfortable isn´t it?
Hope everthing is going in the right direction for you.

Good luck with the CTD – not everyone wants it but if you wanted to let us know when you are having it I would like to put you in our "prayers are requested for" circle. I found it very comforting to know that hundreds of people were praying for my safe recovery – many of them I didn´t know but how kind of them to consider me when everyone has such hectic lives nowadays.

Anyway, Best Wishes

Love Carolxxx

[DaiCroParticipant]

Hi Onlyme,

I had my SCT following an excellent response to CDT but unfortunately, for valid reasons that I can accept (reluctantly), I relapsed after only 10 months, so counted as a failure to launch.

I am now on Velcade as a tertiary treatment for a relapsing patient. I only scraped enough stem cells for one SCT and no one's mentioned any other attempts down that path… so its Velcade/Revlimid/pom-Ben- wysiwyg -ski for me. 😀

I have just completed Cycle 3 and my kappa light chains have dropped from 264 to 13 (after Cycle 2) so I'm hoping for Cycle 4 and then hopefully a bit of remission.

My Velcade experience, in terms of side-effects seems about par with the others here… fatigue and PN as the main contributors to the negative side but with, for me, very positive results so far.

There are still questions hanging over the use of novel agents as interim treatments for me… i.e. using them (Revlimid, Velcade etc.,) just to get to a point for SCT's… especially when SCT's seem to be getting less favoured as frontline treatment… I'd rather see a move towards individual treatment plans based on the patients needs and responses rather than blind trials or 1,2,3's – a,b,c's… we are constantly told that MM is an individual disease but they treat us like supermarket customers. 🙁

Its only a matter of time… and money and organisation… but I'd say that within 5 years it will be the only way.8-)

Dai.

[mhnevillParticipant]

Hi only me

I've just caught up with these posts. Don't be down hearted about your Mum not progressing straight to SCT. Not everyone has a long remission following it and the immediate effects can seem pretty horrid. At least it isn't ruled out for her. For myself, I am in no rush for any treatment and have decided, at 66yrs and with other health issues, that if suggested to me, I wouldn't want to go for a SCT. (Of course i might change my mind, but i don't think so.)

I do hope you Mum is tolerating the Velcade well without the dreaded NP.

Very besrt wishes.

Mavis

[kaychappersParticipant]

I just wanted to let you know my experience too. I was on Myeloma X1 trial and got CDT. It plateaued at 22 after five months and I got SCT arm of the trial. I was taken into hospital and had stem cell harvest only to be told my pps had gone up in a a couple of weeks to 34 (they were only 38 when I first started treatment) so they stopped the transplant. I am now on Velcade and hopeful too that the velcade will knock the blighters back to a low count. I wish your mum all the luck on the velcade and hope that my experience has made it easier that she did not get the SCT straight away and that they have other drugs that they can use to help us. Kay x

[clarabellParticipant]

Hi only me! Great to get an update on your mum, hope all goes well going forward. Dad is still on CTD on cycle 8 and still levels are dropping nicely. We have been told he is suitable for SCT and had no suggestion of velcade etc as an option, Dad feels really drained but it would be another few months before he gets his SCT should he want to go ahead with it, we just need to wait for his levels to plateau before they stop CTD. Best wishes and much love clarabell xxx

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