[DaiCroParticipant]

[quote][b]'Good News, Mixed News'[/b][/quote]

Is how my stand in consultant described my Kappa Light Chains readings today.

We started our Velcade MKII venture with the excellent reading of:

[b]Cycle 1: Start: 3,087 Finish: 380 [/b]

Then we had to wait today for Cycle 2 & Cycle 3 results… i.e.

[b]Cycle 2: Start: 380 Finish: 39 [/b]

[b]Cycle 3: Start: 39 Finish: 128 [/b]

She said it was my call whether or not to continue with the once weekly infusions which started on Cycle 3 or to revert to the twice weekly infusions of Cycles 1 & 2. I decided on the former… of once a week infusions because as I see it the reason for going onto this regime was to gain me extra time and as I see it, with the figures above, I have plenty of leeway and the figure might yet come down again or plateau. 😎

Given that we won't have the results of the Cycle 4 Light Chains Test until a fortnight into Cycle 5 we might as well continue as is and make the next call at the consult before Cycle 6. 🙂

[b]Bloods: WBC: 3.96 RBC: 4.47 HGB 112 PLT'S:130 Neuts: 2.32[/b]

Funny old game… and suddenly it's my call… I like that muchly… very muchly indeed. 😎

Dai.

[VickiParticipant]

Dai

That's great news. It must feel even better to have a choice!. The figures look good to me so hopefully that's good news 🙂

Crack on Dai you are an inspiration :-), along with Janet who is playing the quiet support role:-)

Vicki and Colin x

[MariParticipant]

Great to see those numbers looking so good Dai, I remember that they have not always been so good.

Glad that velcade is working for you, keep going in the right direction,

Much love Mari

[DaiCroParticipant]

Hi Vicki & Mari,

Thank you both for you words of encouragement. It is great to have a real choice, enthusiastically given by my stand-in consultant. 😀 Mind you it didn't have any cost issues, so perhaps that was a part of the largesse. 😉

I have now started Cycle 4 and I will not get the next update of my Kappa Light Chains back until halfway through Cycle 6… that will tell me whether the 'Once a week' regime for Velcade is working or not. Even if the figures continue to rise it will not matter too much as long as the rises are relatively small… that Velcade is keeping my light chains either on a plateau or on small incremental rises. If the rises in my light chains are large then we will have 2 choices… a.) To revert to twice a week infusions… or b.) To look for another treatment (heaven knows what though… unless they give me access to a trial, which at the moment looks unlikely). 😛

Of course, there is always the chance that my Light Chains will actually plateau… or even start dropping again.8-) 😉

We will have to wait and see. 🙂

Dai.

[wendyduffieldParticipant]

Hi Dai
Its good to hear your light chains have dropped so substantially and I perfectly understand your tactics. If you can keep the KLC's at a low level with once weekly infusions that keep your disease stable, that is a good thing. Who knows maybe you can get away with once a fortnight infusions or even once a month? I am hearing of people on monthly velcade as a "maintenance" regime. It is also good to feel that you have just a little bit of control over your treatment and your disease but I know its early days!!:-P 😛

[bandityogaParticipant]

Dai

Good to hear that they have found a treatment that is working for you. Ian gets bloods checked tomorrow so fingers crossed kappa light chains haven't risen. He is getting stronger and even managed to walk 2 steps with a zimmer.

Have you any side effecs on velcade/

Maureen

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