[LyndaParticipant]

Hi Everyone
Just giving you an update on Pete. Diagnosed mm November 2011 after having really bad back pain. Put on CDT which worked well for a couple of months but now has plateau'd out on his paraproteins even when Thalidomide dose was doubled.
He had done really well gradually coming off morphine caps, diazepam and amitriptyline for his back which had completely zombied him but is feeling a bit fed up as they are going to put him on weekly Velcade for a couple of months to see if that will bring those pesky pps down. He had been pencilled in for SCT next month which has now been put back to July/August.
Pete has "A bring it on approach" and just wants to get on with things and finds it increasingly difficult when MM dictates to him instead!!!
Still his count hasnt gone up so we must be thankful for that.
So way to go with the Velcade and lets hope that will move the little blighters!!!!!!!
To use the Lovely Toms phrase Onwards and Upwards. That always makes me smile. Thanks to all for listening. Excuse any spelling mistakes!!!
Lyn xx
P.S. Eve Is it the 23rd Slim goes in for SCT? If so I wish him and you all the luck in the world . You both so deserve it.

[tomParticipant]

Hi Lynn and pete

Ye its a bugger when the MM tells us what to do or not to do :-/ am sure Pete's "Bring it On" tude is going to stand you both in good stead 😎 I hope the iccl beggers are soon moved and SCT is sooner than you think 😀

Love and Hugs

Tom "Onwards and Upwards" (hope it made you smile again 😎 ) xxx

[eveParticipant]

Hi Lynda

Good to hear things are OK with Pete,I think we all feel the same,just want a result and an ending,but it is early days for Pete.

I know he will have to go the hospital more,but if it works!!!!is Pete having sub cut or infusion???,Slim had to go,for blood test morning then infusion afternoon,the actual injection takes all of 3 seconds,use to drive Slim mad.
He had 6 cycles of Velcade,but knocked MM down to under 5% in bone marrow,3 months on he is at last having SCT,goes in to Kings on Monday .
When you are feeling ill,its easier to have treatment,but when you are feeling reasonable well,and you know the treatment,will make you feel ill and 4 weeks in hospital.It is a hard call.:-S
Let us know how Pete gets on,!! Love Eve

[DaiCroParticipant]

Hi Lynda,

As I have said elsewhere, I see Velcade as a bit of a terrier… set upon the MM to bring it to heel… a couple of cycles might not seem much but as I understand it that is where the biggest drop occurs… in the first two cycles… it certainly did for me, dropping my kappa light chains (Bence Jones Myeloma) from 196 to 13 in a 6 week period… the other 4 cycles were used to bring it down that last bit and then consolidate.:-|

So 2 Cycles should hopefully do the trick.8-)

I wish you both the best of luck and as few side-effects as possible.:-)

Dai.

[LyndaParticipant]

Hi Tom,Eve and Dai
Thank you all so much for your replies.It was nice to have such support and to know that Velcade has done the job with Slim and Dai.I feel more optimistic that it will work for Pete now.
Eve- Pete too has his in infusion weekly. I can understand Slims's frustration!!!!. We will be thinking of you both next Monday. Please keep us posted when you can.
Kind regards to all
Lyndaxxxx

[OutdoorsPaulParticipant]

Hi Lynda
I am on PADS induction which includes Valcade this "mixture" has brought down my PP from 2300 down to 37 after only 3 cycles so it works. (I got the myeloma bounce when I came out of remission i.e it came back during Myeloma 11 trail).So pass onto Pete to stay optimistic.
I am now lined up for stem cell harvest 23/24/25 may and stem cell transplant early June with a period of recuperation before allo graph transplant so its all go here in the Pennines!
cheers Outdoors Paul

[LyndaParticipant]

Hi Paul
Thank you so much for your reply. It certainly has given us some encouragement that the Velcade will work. I will keep you posted.
Am really pleased for you that things are moving well towards Stem cell in June. Hopefully we wont be far behind you!!!
Take care. Love Lyndax

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