Stand Down & Wait Around

This topic contains 19 replies, has 8 voices, and was last updated by  Vicki 11 years, 7 months ago.

Viewing 5 posts - 16 through 20 (of 20 total)
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  • #102217

    andyg
    Participant

    Oh and as to cost – I read over the weekend that Revlamid is $425 a pill :-0 obviously that's in America.

    Every day is a gift ( and expensive )
    Andy

    #102219

    DaiCro
    Participant

    Well I went in today at 11am and had my blood taken… my Neutrofils were 1.17 which meant that Thunderbirds were Go… but very slowly, in 1st gear and with a hill start, on a 1 in 3 hill. The Bendamustine was ordered at 12pm or slightly before. It arrived in the Day Case Unit at 3.50pm and I left the unit at just gone 5pm. It made for a long day, leaving us both more than a little stiff and sore. I knew that things might be a bit slow with the catch-up following the Bank Holiday but even so.

    But never mind, at least I am back on treatment and I will hopefully be back for more next Tuesday as long as my Neuts are OK.

    David, my experience with Velcade was both good and bad. Good because it knocked a secondary tumour for six and my light chains for seven within the first 2 Cycles… I was in complete remission after 5 Cycles and treatment finished after 6 Cycles. I should have pressed for the full 8 Cycles (as I was told I would from the start) to ensure that the disease was properly put in its place as, like Slim, my MM returned almost immediately (I was declared in full remission in mid-October and declared as relapsed in December). I was told at the start of treatment that remission could be anywhere between 6 and 18 months but I only got 6 weeks. From what I can work out it seems that the more bone damage you have the less remission you get.

    I have always responded well to treatment but not as well when left to my own devices while in remission… which is why I haven't given up on Revlimid as yet. I started Revelimid (after waiting for five weeks while trying to qualify for the Carfilzomib trial which I missed out on by a week) in February 2012. My Light Chains were at 125 at the start of treatment and at 525 at the end of treatment in December 2012. I am still convinced that my struggle with C-Diff and the difficulty in absorbing the Revlimid was the reason for the rise in my light chains. Even so, my Light Chains rose by 400 over a 10 month period. In the interim period of 4 weeks between coming off Revlimid and starting Bendamustine my Light Chains rose from 525 to 2,800… they are now down to 575.

    So Velcade is certainly effective as a treatment but I am not sure of its efficacy as a long term remission giver. But I am a believer in Revlimid. As you have relatively little bone damage you may well do better.

    Here's hoping. 🙂

    Dai.

    #102218

    eve
    Participant

    Hi everyone

    Andy I think Velcade is around £ 750 per phial,but the makers of Velcade have some form of agreement that if it does not reduce the Myeloma. by 50 percent the health service do not pay for it plus it is a trial drug unobtainable,as not passed by NICE,,that's the way I read it any way,don,t quote me David. Lol

    To give my local hospital a boost,we do see the same one,but its the Myeloma x1 nurses who know the individual person and history,and you can usually go through them,for a lot of things,but its the consultant who decides what test are done.
    I have. Always seen one consultant,except when we go to Kings and that's what I call a factory line, lots of patients usually blood test not up although you added an extra 2 hrs befor your appointment,then it,s hello how are you??? That's the question,then you see a glazed look in there eye and it,s by by see you in 6 months,then an expensive journey home.
    Although it seems less personal.i could not fault one doctor or nurse concerning high dose chemo harvesting,or the standered of care,excellent ,but the food was uck!!!!
    Andy I like that Every Day is a Gift ( and expensive ) made me smile love Eve

    #102220

    tom
    Participant

    Long day for you two Dai and Janet 🙁 but it looks like it was worth the wait 😀 albeit am sure it can be done faster, it cant be good sat up in hospital waiting.
    Keep well Dai and hope you stay on treatment till it sorts it all out.

    Tom Onwards and Upwards

    #102221

    Vicki
    Participant

    Well done Dai, those neutrophils got a wriggle on then 🙂 result!!!!

    Keep going 🙂

    Vicki and Colin x

Viewing 5 posts - 16 through 20 (of 20 total)

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