[peterlParticipant]

Hello again Maureen,

Thanks for your post.  I also have the lambda variety of FLCs.  And they’ve dropped from a massive number down (in their thousands) to just 6 !  (with Velcade, steroids and thalidomide).

One of the problems regarding SCT, for me, is that it will be in a large London Hospital (which is in special measures), very difficult to get to for my wife visiting, and from what I understand – it’s a long time in hospital for replacing the stem cells, after the massive chemo’ doses to clear out the ‘nasties’ – which itself has got a lot of risks.  I’m sure they will offer me a SCT, but I’ll need a bit more detail, at the moment before I think I’ll take it on.

Peter

[peterlParticipant]

Hi Andrew,

Thanks so much for your post – and all you say makes a lot of sense to me.  Do you know how long you’ll be in hospital (do you get a break between harvest and the full works?) for the whole thing?   Has your consultant(s) estimated your likely remission time after your successful SCT?

Peter

[annlynnParticipant]

hy peter. In response to your questions i had my harvest 30th and 31st july last year addmited to freeman hostital 12 august chemo same day late ish at night my husband stayed till it was all in ha ha s
i was sucking ice pops like a goodun !!!! stemcells back in 24 hours later in hospital 17 days in total. hang on in. its worth every minute to get yourself in remmission. not sure about the statistics are about times and length of remission everyones diffrent im just tickung of my first year and praying for t he next one. best wishes. Ann xx

[andrewrParticipant]

Hi Peter,

I have about a 6 week gap between harvest (yesterday) and stem cell transplant (Oct 4th). I’m using this time to go to the Southampton Boat Show, visit Mum in Law, and spend a couple of weeks on my boat in Spain. How’s that for not letting MM rule you – even when in treatment phase. All fully supported by the Leeds Consultants.

As far as I understand…..

Day one in hospital is high dose chemo (Melphalan),

Day two is stem cell transfusion

Next 14 days is checking to see if graft has taken and that there are no infections. Obviously again no guarantees. Then about 2-3 months for full recovery.

My consultants hope, on 2nd transplant,  for about 50-75% remission of original remission. I wouldn’t guess how much remission you might get from a 1st SCT.

In my experience ALWAYS, ALWAYS pick up the phone and speak to the staff at Myeloma UK or go to an Infoday. They always gave me good info or pointed me in the right direction and in 1997 they didn’t have the resources they have now (it was just Eric and an assistant).

A

 

 

[peterlParticipant]

Hello Annlynn,

Thanks for your post.  17 days is not too bad.  And it sounds as though you almost had a ‘fun time’ ha ha.  But I take your point regarding the value of the SCT – I can see I’ve got some thinking to do.  It’s just whether my general state of health and age (66) will cope okay.

Thanks again,

Peter

[peterlParticipant]

Hello again Andrew,

Absolutely brilliant that you’re so active between the harvest and the second stage of the SCT.  Also the estimated timetable (which pretty much agrees with Annlynn’s earlier post).  Can I ask how much remission you got the first time?  And was this after your first SCT, or didn’t you have one?

Nearer the time I certainly will be speaking to the Myeloma staff.  I’m just trying to get a broad sense of what’s involved at the moment.

Have a great time at the show – and when you get ‘aboard’ in the sun.

Very best wishes,

Peter

[annlynnParticipant]

ha ha peter. fun time might be pushing. it. a bit !!!! if my husband hospital visiting. while. i. throw up or holding. my. hand. sitting. on. the. loo sounds like. fun. then well ???? it takes all sorts. but what i will say. like rebbecca always says. it is dooable I wrotea diary every day and when. i. look back there. was some. scary days but i came through the other end. xx ps i was 59 xx

[andrewrParticipant]

I was diagnosed in 1997, had first transplant in 1999, crawled out of hospital on Dec 24th 1999 and just made a Dec 31st Millenium Party.

Obviously I am one of a tiny percentile

 

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