[DaiCroParticipant]

Hi All,

I will be starting my 3rd Cycle of Velcade next Monday. As many of you know, this is my second time on Velcade, having successfully completed 6 Cycles, gaining complete remission in November 2011 (although I relapsed after only 6 weeks).

This time we are aiming at stretching out the time on Velcade, rather than aiming at remission. The plan is to switch from twice weekly infusions to once a week… which will give me an extra 84 days onto the 6 remaining Cycles… dependant on my first 2 Cycles bringing my Light Chains reading down from the starting point of 3,087.

Ordinarily the remaining 6 Cycles would take me into mid-November. An extra 84 days added on to the normal time gained from the 6 Cycles would take me into mid-February, 2014. So understandably the Free Light Chain test has been dominating my thoughts for the past 6 weeks. The other side of the coin… where the Light chains are resistant to Velcade doesn't bear thinking about (although I have had to consider that option and where it might take us next.

My lead nurse rang me at home this morning to sort out my medications so she could order them from the pharmacy, ready for us to collect on Monday. She didn't mention the results from the Free Light Chain test (taken at the beginning of Cycle 2). and I was on tenterhooks.

I had to bite the bullet and ask if she had seen the results.

'Oh I am so glad you asked me, I have been dying to tell you', my lead nurse said. (Some sort of protocol had stopped her from telling me without my asking because she had not been instructed to tell me).

'The results from the FLC taken at the start of Cycle 2 show a reduction from 3,087 to 380'. She was as excited as I was shocked.

[b]3,087 to 380 in 1 Cycle[/b] – unbelievable. I thanked her and she rang off. I burst into tears and called Janet… she was as delighted as I was a wet cloth.

So, here we are… ready for Cycle 3 with the 1st infusion on Monday and the next 3 infusions on consecutive Mondays followed by 10 days rest… the first of the Super Cycles and I know I will have to watch myself, follow all instructions from my medics and above all stay alert and positive.

Back in the game for the first time since November 2011. 😎

Dai.

[AliParticipant]

Hi Dai,
Fantastic results, how wonderful. Just keep it up!

Love Ali x

[jmsmythParticipant]

Dai what fantastic news. Keep it up 🙂
Love Jean x

[meganjaneParticipant]

😎 😀 🙂

That is wonderful news Dai, long may it continue!

Megan

[MothasParticipant]

Dai that's great, Velcade is a powerful treatment as my consultant keeps telling me. I'm delighted for you, you've had a great response.

t

[tonyfParticipant]

Good news Dai, you'll be ready to take on the world soon.
Keep it up.
Regards
Tony F

[HelenRParticipant]

Fantastic news!!! I'm so happy to hear that Dai – back in the game indeed!!

That velcade is indeed a wonder drug. I always forget what a proteasome is, but once you get a proteasome inhibitor on the case your myeloma cells seem to just wither and die!! I had the same, cycle 1 and BAM! very lucky for me as it was the first thing they tried.

I think actually I once saw a diagram showing that the proteasomes are for recycling waste products and if you inhibit those, the myeloma cells can't survive. Quite nice to think of your myeloma cells drowning in a big heap of rubbish…. they bloody well deserve it after all they've put you through.

Good luck for the next cycles. Is there a way to stay on velcade maintenance to stop them ever coming back, if last time that happened after 6 weeks? I feel like I've heard of people in the US on lower less frequent doses of velcade but not sure.

Helen

[VickiParticipant]

🙂 🙂 🙂 🙂

Result result result…..Dai that is absolutely great news. I almost couldn't read the next line….blinking eck that's some kind of a reduction and you've got that extra time. Your post made me laugh too. I have images of this nurse just dying to tell you and would she not if you hadn't asked. lol. I would be a rubbish nurse as protocol or not I don't think I could have kept it to myself. I'd have had to think of some way of giving you a clue 🙂

Great result of Janet too….

Vicki and colinxx

[LizMaywoodParticipant]

Dear Dai

I often follow your valuable and supportive comments to so many on this site- you so deserve this good news-long may it last.

Take care,
LIz

[PatGParticipant]

Dai, such wonderful news. Janet will have to stop you jumping up and down I think!
Velcade has worked for me so far as I am sure it will for many others God willing. I had my last injection this week with FLC's all back within normal range at 24. I had velcade weekly for 4weeks with the 5th week off, and at a reduced dose as I couldn't tolerate the full whack, and it STILL worked! Two more weeks on the cyclophosphamide and dex then it's all over for a little while (I hope). I really hope you continue to get wonderful results Dai. I am sure we will all be rooting for you.
Love
Pat xx

[JacquieParticipant]

What a result Dai

long may the good news continue 🙂

[BADGERParticipant]

great result Dia:-) 😀 😛

I am doing really well on velcade PP'S 0 I have it once a week for four weeks then a week off mine is SUB CUT which is marvellous I am on holiday next week then UCH what me togo on a two weekly regime one week on one week off this will take me to 9 cycles i hope this gives me another good remission lets hope its a wonder drug for us
Love Jo x

[PerkymiteParticipant]

Well done Boyo. you are an inspiration, just keep going, keep bl***y well going.

Kindest regards – vasbyte

David

[bandityogaParticipant]

Wonderful news Dai hope it continues.

Maureen

[DaiCroParticipant]

Thank you, thank you, thank you all. 😀

I hope to be on the same regime as Jo from Monday… although I will be trying to slip in a period of rest days every 2 weeks if the regime and my body can take it. 😎

It's a pity my regular consultant is away next week as she was enthusiastic about stretching the treatment out as far as possible. I don't know who I will see and knowing them all I am only sure that each of them will approach the task differently. My best hope is that my usual Consultant has left a proposed plan… ah well. bring it on. 😉

3,067 to 380 Tra, la, la. At least the numbers are on my side. 😎 😀 🙂 😎

Dai.

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