[pjollopParticipant]

Hi,
Is there anything that we as patients can do to hurry up the approval of getting Velcade Subcutaneously?

Considering that it is said to be just as effective this way but with fewer side effect you would think things would be progressing faster.

It would also seem to save the NHS money in shorter treatment times (saving nursing hours and treatment room time), no need for Hickman line (and its maintenance)etc.
Is there a trial on this method of delivery? anyone we can write to?

Good luck all.
Peter (who hates Hickman lines with a vengeance and will probably be on Velcade when I relapse)

[BADGERParticipant]

Hello Peter
This method is widely used in America it sounds a much better system
I have a friend who attends a local clinic with me in Stevenage she is on velcade at the moment she asked the consultant she sees who is the head heamotogist about having this method she said that she had never heard of it!!! thats a big worry,as it happens we are both also under UCH we were there on thursday she asked them no problem! you can have it here come up twice a month so it is available we will just have to push for it
Regards Jo

[MinParticipant]

So if you don't ask you don't get, these consultants need to read more Jo. Its not good when the patient is keeping the consultant u to date with current events.
Love MIn

[DaiCroParticipant]

I have just completed Cycle 3 of Velcade and I pressed my consultant (one of the UK's leading lights on research and innovation) about subcut Velcade… and she told me it was coming and not to be surprised if it started while I was still on treatment.8-)

Nothing as yet though.:-(

Dai.

[pjollopParticipant]

hi, Badger, what is UCH ?
My understanding at the moment is that it isn't licenced for use Sub Q by the [u]FDA[/u] Why are we waiting for the Americans when (as I understand it) the research was done by Prof Gareth Morgan [u]in the UK[/u]. I really do not understand what is going on when this research would [b]seem[/b] to radically improve the quality of life for so many people. I visit
support groups and the number of people who get side effects forom Velcade (pn etc ) is significant. I am scared of turning into Victor Meldrew but am happy to if it will help:-D

[brochoParticipant]

Hi Peter UCH is a London hospital I am also a patient there. Several of us have have asked our docs about the sub-q Velcade and apart from them being aware of its use in US no good reason has emerged as to why we are not !! It is so frustrating as this would make the use of Velcade so much easier for us . Have you ever had a PICC line? It is so much better than the Hickman It does not need to be put in in theatre for a start , needs only a local anaeshetic , I have had 3 now and it really is painless It is not an open wound so less risk of infection and easier to live with too, all you need is a dressing on your upper arm covered with tubigrip, very discreet too It may be your hospital has not yet trained nurses to fit and use them but definitely worth asking Please let us know how you get on Bridget

[scott9Participant]

I was on Velcade for about three months. I just had to go to the hospital once a month. They stuck a line in a vein each time and put a saline solution in first then the velcade which took about ten seconds to inject. I can't believe you need a permanent line for it.

However, it nearly killed me. I lost nearly 4 stone, couldn't eat, kept getting sick etc. The consultant then switched me to lenalidomide and I'm coming to the end of that six month course. Hopefully he will give me good news when I see him in a couple of weeks. This is such a random disease though it can come back at any time so you just have to accept the situation and be thankful for any extra time you get. That's my view anyway.

Good luck with the Velcade and associated side effects.

Scott

[mhnevillParticipant]

Hi Peter

Don't know if you read the American Site "Myeloma Beacon" but they were sugesting that it isn't licensed for all US yet, but said UK would follow. You do wonder why things take so long when it is obviously going to make things better for all of you on Velcad.

Take care.

Mavis

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