[BADGERParticipant]

Well its back again para not high 6 but there is some bench jones in my urine so because of the state of my kidneys they are starting treatment next week Velcade once a week and dex on two days hope I manage ok Dia I will be asking you lots of questions if you dont mind BM tomorrow OUCH!!this will be the fourth one they dont get any better I have had 2years 8 months remmission from cdt so not bad
Watch this space:-( 🙂 😉
Jo

[MinParticipant]

Oh Dear Jo,
What a shame, don't we all wish that a long remission was the norm. As you say you have had a good length of time but its so disappointing to know your back on the medication treadmill, especially as Velcade has you tied to the hospital for administration.
But good luck and best wishes for the 2nd part of your journey
Love Min

[lorraineyParticipant]

Hi Jo

I'm so sorry to read that the beast is back. I wish you well with your
treatment and hope it kicks it into touch very soon. Take care
of yourself and keep us posted how you're doing.

Love n hugs Lorraine xxxx

[eveParticipant]

Hi Jo
I was thinking about you today,so sorry Jo you have been doing so well,Velcade has worked well for Slim,and they have caught you early,Let hope the BMB shows low results,I can only say its knocked Slims from 80% to 10% in bone marrow,that,s after 4 cycles twice a week,with no heavy side effects.
Ask away Jo,if we can help you we will.:-)
I know you have faith,so may your god go with you.Love Eve

[RozParticipant]

Oh Jo
I'm so sorry the big [b]IT[/b]is back

I could call it alot worse. Hope you tolerate Velcade and get up and running again.
all the best
Love Roz xx

[shirleyParticipant]

Hi Jo,so sorry to hear your not well again and you were doing so well in remission,i do hope the new treatment will get everyhting under control and that your back on level par,you stay strong & positive,and great care Shirls x x 🙂 🙂

[jmsmythParticipant]

Oh Jo, you were doing so well. I'm so sorry that This horrible thing has reared it's ugly head again. I pray that you next treatment works. Good vibes going to you.

Live Jea xx

[HelenParticipant]

Hi jo
What bad luck, I'll be thinking of you tomorrow with the bmb, I'm not looking forward to my next one.
Love Helen

[brochoParticipant]

Hi Jo its lousy when it rears its ugly head again but you are in good hands at UCH so you have a good chance of beating the beast! Stay cheerful we are all with you lots of love Bridget x

[GillParticipant]

I really hope that you get as great a result from Velcade as Eve's Slim did By the time you read this you will probably have had you BMB I do hope it was not too bad.

MM patients go through enough without nasty painful things on top

Love from Gill xxx

[susannahParticipant]

Hi Jo so sorry to hear the beast is back, but there has been alot of positive news on Velcade recently, so good luck

Love
Sue

[PerkymiteParticipant]

Chin up Jo. the is the time to Vasbyte like mad 🙂

kindest regards

David

[DaiCroParticipant]

Hi Jo,

I am so sorry that your CDT remission has come to an end… but 2 years 8 months for a frontline treatment remission is wonderful and it shows what can be achieved. It is well documented here that I wish I had stuck to my guns in wanting to see how long I lasted on my CDT remission instead of diving into the SCT route… mainly because I was 5 months into my remission and feeling extremely well with no signs of weakening or relapse. But that's my story and this is yours.

What it does show is that you respond well to treatment… extremely well and I hope that the next treatment brings similar results. Velcade once an week and Dexamethasone twice a week seems to be a fairly light treatment – is this due to your kidneys? It looks slightly like a maintenance treatment to me but either way I hope it works, knocks your pp's back, halts the kappa light chain build up and allows you as much normalcy as possible with little side effects. I was on a pretty strong dose of Velcade for my first 3 cycles and suffered for it but as they reduced it the side-effects improved drastically.

As you know I am a great believer in lower doses over a longer period… American studies have proved to them that this is the way forward and your CDT longevity has shown just what this approach can do.

The Devil is back but I believe that you have Angels on your shoulders Jo and I believe that your propensity for responding to treatment plus your Angel promoted positivity and cheerfulness will stand you in good stead over the coming months.

Heres to your next bout of remission… be it straight remission or maintenance led remission… either way I hope and pray it works and works well.

Much love

Dai.

[scott9Participant]

Hello Jo,

I'm really very sorry to hear your news. You are my number one hero on this forum. You've given me great advice and your posts have given me hope. I pray that you will get through this OK. Just under 3 years sounds not too long to me, but better than just under 3 months I suppose. At least mm does give us all time to get ourselves sorted out. I keep meaning to get my will written but still haven't got round to it yet. Not much to put in it so should be easy enough.

Keep up the fight and keep posting to let us know how you are getting on. I'm getting over a bad cold which just won't go away, but that is hardly worth mentioning in comparison to other problems on here.

Take care

Scott

[BADGERParticipant]

Hello everyone

thank you for all your encourageing words they really cheered me up
the BM was horrible as they had to have three digs as my bones are difficult to aspirate so I have a bit of a sore bum at the moment:-(
Love JO X;-)

[Author]

Posts