[MothasParticipant]

Went to see my specialist at UCLH today expecting to be given another round of PAD but they've decided to let me go straight to the SCT. Gulp. Scared and excited all at the same time.

They couldn't see any benefit of giving me a 4th cycle of PAD. I've not shown any myeloma in my bloods, urine nor bone marrow. I had an MRI scan in Feb after my first cycle which has shown some progression of the disease in the bone damage from the previous one in November, but given the limited period of time I had been in treatment they expected this. The PAD wouldn't have had time to have an effect by the time of the MRI.

Anyhow, I'm pencilled in for mid June slots permitting.

[EvaParticipant]

Dear Tom,
Am very delighted about your response to PAD. Also enjoying your blog very much.
I understand you feeling nervous – I did too. It's so difficult to generalise about the effects of an ASCT. For most people, the first month is a bit of a write-off, though once home after nineteen days, I was able to read and draw. I got stronger incrementally, and after three months there was another leap. At that stage I could walk a couple of miles without any probs, cook meals, sustain mental activity for hours. I would still need a sleep in the afternoons.
Perhaps your trepidation is not just about physical discomfort, but about the fact that it feels 'monumental' in some way to undergo a transplant, irrevocable. Unfortunately myeloma does invite extreme measures. The literature swithers, with some articles suggesting that ASCT at first relapse is just as good, and other papers ( perhaps still in the majority) implying that a transplant is still a very important tool. I suspect you've researched this very thoroughly yourself.
I was quite conflicted on this topic and after my transplant there was this 'what if?' question hanging in the air. For this reason, I asked my consultant to just repeat induction therapy when I had relapsed after two and a half years. My induction was CDT, and after relapse I had it without the Cycloph. I got a very good twenty months out of this, with quite a bit of this time on a very low dose of Thal which enabled me to lead an essentially normal life.
You are never going to be sure whether you are one of these people who gets a longer time from ASCT then from sequential novel or even older treatments, or if the order would have mattered.
Sometimes we just have to take a leap.
Good luck,
Eva

[PeterJamesParticipant]

Hi Tom
After all the posts re the SCT, as you stand on the edge of the cliff , it comes down to a personnel decision
My advice would be to grit your teeth & go for it
I came out of hospital on 1st Feb this year after sixteen days
We all have a bad few days & some time is needed for a full recovery, I still have some loss of taste , dry'ish mouth & not yet that fit , nothing changed there then
It is a " life extender" giving me full remission, which is all I wanted
I was fully prepared for all the likely discomforts thanks to this site ! Also had huge backing from wife & family. Also could not fault all at Christies
Looking back I am very glad I had the SCT , there is a moment when the mathalan is going in , you think , that can't be drained out , no going back
All the best
Peter

[BADGERParticipant]

HI mothias

great news wonderful Uclh hope it goes well for you and you get a long long remission:-)
Regards Jo x

[bandityogaParticipant]

Hi Tom

Hope all goes well with the SCT and you get a long remission.

Maureen

[HelenParticipant]

Hi Tom
I only had 4 cycles of RCD before my ASCT .As both Eva and Peter have covered just about every point very succinctly I can only add that whatever decision you make will be the right one for you, if you choose asct it will not be pleasant but you will endure it and if you have questions and need answers someone out here will always answer if they can. I vividly remember that trepidation and excitement….. I have also felt it at times on this journey and it is a weird feeling, is it because we are about to take what is a potentially life saving journey but also a very personal choice too.
Good luck with it.
Love Helen

[eveParticipant]

Hi Tom

Start eating ,you can eat for as much as you like,but keep it health, 😛 🙂 😎

Then it will not matter about weight loss,you must be feeling ,it's all bee worth while,lets hope you have a very long remission .Eve

[MothasParticipant]

I want to thank everyone for taking the time to respond.
I'm definitely going for it. I realise that there are other options but on weight of evidence I think this gives me the best opportunity for sticking around for a bit longer!

If anyone out there has had SCT at UCLH I'd really appreciate some insights into what it was like. I've been reading Alex's (of this parish and the under 50s group) blog which has given a very good account of what he went through
http://dialmformyeloma.blogspot.co.uk/

but any further info, reflections, thoughts would be gratefully received.

All the best people,

Tom

[tomParticipant]

Hey Tom

Good Luck with it I had my SCT in December 2009 and am sat here still in remission and drug free 😎

Tom Onwards and Upwards 😀

[VickiParticipant]

Tom,

Good luck. It's strange, but when Colin got,told we were going to,sct it was a huge boost but scary too. It's what had been worked for but when it came to,it we were scared. You can do it as you've got this far 🙂

Vicki and Colin x

[mhnevillParticipant]

Hi Tom

Can I add my best wishes to everyone else's.

Very best wishes.

Mavis

[MothasParticipant]

Thanks Tom, I'm heading vertically as suggested 🙂

[adamsp41Participant]

Hi Tom …hope all goes well with your SCT… and you "kick it between the legs"…stay safe …Phil

[CharlotteParticipant]

Tom – I just popped back to see how you were doing. Very glad to hear you are getting the transplant soon; I really hope it all goes smoothly for you. I'm sure you'll have plenty of friends and family looking out for you, but if you would like this strange face to pop round and say hello as you recover, let me know.
All the best and stay strong,
Charlotte
P.S. I followed your advice re. getting an MRI, and my spine looks fine, thank God (other than being a bit of a mess!). It's really good to have that bit of paper, though.

[DaiCroParticipant]

Hi Tom,

Mid-June seems far off but its only 7 or 8 weeks away… the time will fly but try to enjoy it as much as you can. The further you go along the MM path the more you will want to jam the brakes on.

There are plenty of blogs about the experience of SCT's and even some excellent recollections and SCT 101's… but unfortunately they get swallowed up and then lost in the archives somewhere. I have called for a new heading under the umbrella name of Patient Experiences… with permanent 'stickies' of all the different processes and procedures relating to MM and its treatments, including the different stages and treatment related experiences. i.e.

Frontline Treatments
SCT Preparation
Stem Cell Harvests
SCT's
SCT Recovery and Developments
Dealing With Relapses
Velcade
Revlimid
'Other' Treatments
End Of Life Procedures

The forum can update, delete, add to or introduce new headings as it seems fit but each of the above could have several examples that new members (and old) can read and use as points of reference for guidance as and when they need them… 'as well as', not 'instead of' the normal discussions and advices given on a day to day basis.

I feel that a generic heading with sub-sections along the lines of those above would be an invaluable reference point for forum users… but no one responded… not an iota. Perhaps it will happen one day and we will be richer for it… until then?

Anyway, there are quite a few people who have been through the SCT process in the past 12 months… with experiences still fresh enough to signpost and guide you through the process with good tips and advices, so I wouldn't worry about approaching your SCT blindly.

Many people sail through the process and while it is a relatively unpleasant process it is not half as bad as imagination portrays.

I wish you well and I am sure that it will come and pass before you know it. 😎

Regards

Dai.

[Author]

Posts