[2ndbubbleParticipant]

A huge thanks to all who replied to my last post. And thank you for making me feel so welcome.
Mum has made the decision not to have the SCT and i support whatever she decides but am now just wondering what happens next. Anyone have any experience with this. What options should be available?
Want to be able to support her choices as best i can so want to know what we are up against.
Thanks again for all your advice.
So good to be able to talk to people who understand
Love Sarah x

[BADGERParticipant]

Hello SArah

I didnt have an SCT due to kidney damage I had cdt and achieved 3yrs 6 month remission just started on velcade there are lots of ongoing treatments:-) so it not all doom and gloom so I hope your mum keeps well on the treatments so keep your chin up good luck to mum
Love JO

[2ndbubbleParticipant]

Thanks for your reply Jo
Can i ask if you were on any drugs except what your GP would normally prescribe. Some sort of maintenance drug or something? Or do you get to be myeloma related drug free?
Just trying to get a heads up as I know mum is fed up of feeling so lousy all the time and the hair loss gets her down terribly

Love Sarah

[tomParticipant]

Hi Sarah and Mum

Well I also support your Mum in the decision not to have a SCT I had one but its not for everyone, I wish your Mum a good responce to the treatment she is given and with little sde effects.

Give your Mum my best and tell her i wish her well in the road to recovery, its not over just because she is not having a SCT, stay strong and we are with you and your Mum on this Journey.

Love Tom "Onwards and Upwards" xxx

[SueMParticipant]

Dear Sarah

Is she any happier now shes made the decision?
I'm pleased she made a decision she wanted not what she thought she ought to do

Maintenance is common in USA but sadly not here unless part of the myeloma trial.You could call lovely Ellen at myeloma uk helpline she can find out if any maintenance trials for people not having SCT

How many cycles od CTD has she had?I realise shes feeling worn out but if she can have the max cycles or have it prolonged to get her best response then she will get the deepest response she can and hopefully have far more "normal time without drugs ie a longer remission.
Many recommend that say 8 cycles are allowed if at 6 cycle person shows complete response or has stayed same they should do another 2 cycles to deepen the response,some drs here seem to think levels ok at say level 6 and stop but thats not whats written as to how it should be done.

Do you know what her paraprotein level was at start and what it is now?

If shes having side affects they may agree to reduce dosage and continue? Thalidomide does make many very dopey and this increases with dose ,I only managed 2 weeks on it as my cognitive skills when dreadful but velcade suited me

Also do you have a macmillen nurse? they are supportive for both you and your Mum and can liase with hospital etc if needed

hugs to you I helped my Mum when she had breast cancer and its hard having your views and theirs differing and wishing to have a magic wand

Is she harvesting her cells just in case she changes her mind in the future(they can be frozen for 10 years)
If was me i would be happier to have them frozen in case i changed my mind she needent have cyclophos prime (consultant mark cooke at qe Birmingham does use it for 1)

http://bloodjournal.hematologylibrary.org/content/114/27/5436.long

maybe useful info goes through all the steps including what to do if patient not having sct(you could show dr the relevant part?)

best wishes PS I didnt have SCT after first treatment had no maintenance and got 12 months before needing next treatment the average response/remission from sct is 12 months to 18mths
Sue

[BADGERParticipant]

hello Sarah
I had a small dose of thalidomide 50mgs for a year after was ok with that then 2years 6months free from myeloma drugs had to take some tablets for the kidneys but nothing else hope this helps
Love Jo x

[mhnevillParticipant]

Hi Sarah

I had six rounds of CDT and this banished the PP completely so for the time being my only treatment is a four weekly infusion of Zometa for bone strengthening. Like your Mum, I have decided not to go down the SCT route and feel very comfortable about it.

You don't even have to get down to zero PP to be able to have a drug free period so keep looking forward. I'm now getting toward three months post CDT and am feeling better every day.

All best wishes to your Mum and you!

Mavis x

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