[sessakellyParticipant]

Stewart was on mx1 trial. He plateaued at pp15 and consultant sent him straight to SCTin March. Today Stewarts pp are still 15 and consultant has admitted that he may have overlooked offering velcade before SCT- this also means Stewart can't have option of lenolidimide as maintenance.

Consultant seems not to care. Told Stewart he can't offer him maintenance either due to price….and if he had issues he should take it to the nhs board…

Has anyone else experienced this.

What treatment can he get ?
This is a life we're talking about, a beautiful life .

Please , has anyone advice.

Vanessa

[EvaParticipant]

Vanessa, I think you should speak to the Myeloma UK staff about options.
I don't see why you can't leave the trial, have Velcade, and when/if it stops working, then have Revlimid. You clearly need an opinion from another consultant. This is something you are entitled to.
Eva

[eveParticipant]

Hi Vanessa and Eva

I got a bit lost on Vanessa,s explanation!!!

Helen,had CDR then a SCT then was randomised for maintenance treatment,the computer decided,it did not matter if you had Velcade or not!,!!!
All on trials
I understand the NHS will not pay for maintenance until you have had CDT CDV and CdR,my husband has had the first 2 on trials he is now on CDR, after normal cycles he will go on maintenance until it stops working.

I can assure you that is the standed treatment set by NICE,because I have tried to get my husband back on Velcade,and the consultant more or less said no choice,an MP in parliament stood up and condemned the fact that Consultant can be prosecuted,for not following NICE procedure ,under the law of doing harm to patients,so unless you are on trials they have to follow NICE rules. eve

[StanstanParticipant]

Hi Vanessa

Charlie had Velcade before SCT and it didn't make much difference.
He went in last week for SCT so it is early days. I can understand you being angry. Don't you automatically get maintenance on the X! Trials? Or was he randomised for none?

Isn't this the most dreadful journey?
Love Mary

[sessakellyParticipant]

Ro

Thanks to you all for replying. Don't know what else to say, I'm spent, I really am. We placed all our faith and trust in this man and it appears he made a mistake. Just to confirm, Stewart was on the trial he plateaued and the consultant went straight to SCT he didn't offer velcade as per required in trial because he hadn't understood he had too. Therefore Stewart is now removed from trial and can not be randomised for maintenance.

It's very worrying, it's all a bloody lottery.
I'm heart broken, and so full of "what if's" . I worry for my wonderful husband that there are other options out there and we don't know of them. Instead we sit, waiting, waiting and just hoping it will stay at around 15.

Is this supposed to be the only treatment out there….I want a long time with Stewart. I know we all feel the same.

Rant over, my baby girl has woken up so I'd best go.

Thanks again

[eveParticipant]

Hi Vanessa

I can remember when Slim was on trials and he was randomised for no maintenance,and yes I felt a bit peeved ,but it did give us a bit more freedom,plus look at people who have chosen not to have maintenance like Vicky,s husband,or people like Babs who were constantly ill,and came off maintenance,so you have to ask your self are we really missing out on anything.:-)

Now PP 15 ,you are in wait and see mode,they could go down,or rise,,let's say they rise plus you have to start again,then it's Velcade,which is having good results.

Lets say they might go down,which they do,depending on,general condition,your husbands PP just might stay the same.

We have all felt as you feel some time on this roller coaster,this is a life time journey,be it short or long,no one knows,but you are spoiling today by worrying about something that has not happened ,not good for you both or your baby.
The consultant might have made a mistake,I do not know,it's great having hind site ,it's no use saying what if,may be I look at life differently,I tend to think these are the cards you have been dealt,and you have to play them the best way you can.
I went through a similar stage as you,when Slim had pneumonia and caused so much damage to his lungs, so so angry,I had to resought to a little white tablet just to keep my emotions in check,worth thinking about. Good luck Eve

[mhnevillParticipant]

Hi Vanessa

Being angry is quite normal in the circumstances you and Stewart find yourselves in. However, let's hope his PP level remains at 15 for the foreseeable future so that he can keep treatment free for as long as possible.

Is there a chance of you changing Consultant? Is there another hospital nearby?

Very best wishes to you both.

Mavis x

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