[GinaHParticipant]

Hi Everyone
I was just wondering if anyone had received melphalan as a treatment when not as preparation for a SCT? My Mam has recently started this treatment after several other unsuccessful treatments (rev, velc, thalid, high dose dex). Our consultant is extremely busy (only works part time and works alone – no nurse or support team) and often doesn't have time to talk through treatments/results and I generally try to fill in the gaps for my Mam after researching on the internet. I am struggling to find any relevant info and was hoping someone could share their experience of this treatment. All literature seems to talk about melphalan been given before a SCT so I'm a bit confused. Any info would be greatly appreciated.
Thanks in advance x

[meganjaneParticipant]

Hi Gina,

My husband Phil had Melphalan as part of his stem cell transplant but the info guide on this site about Chemotherapy does mention Melphalan as a treatment option taken as tablets.

http://www.myeloma.org.uk/files/8012/8031/0094/Chemotherapy%20Infoguide%20Dec%202009.pdf

I hope this helps. Good luck to you and your Mom.

Megan

[tomParticipant]

Hi Gina

I am like most I had mine prior to SCT so cant help.

Its a Shame and a disgrace that the consultant is on his own but that should not detract from the fact that without proper consultations and discussions a decision cant be made.
I would Email/Phone the Nurse on here as am sure you cant be forced into this with not knowing the how's and why's

Good Luck and dont forget the Nurse on here 😀

Love Tom Onwards and upwards xxx

[KeithH17Participant]

Hi Gina
Yes I've heard of this treatment,in fact it was one of the options I was given after my 4th relapse.
It is given with Dex and thalidomide and has a good record fighting MM. I was given it as preparation for both my transplants but neither really set the world alight,in particular the second which only gave me 5,months remission.
SCT's are becoming a thing of the past and in the states I don't think they even use them.
Good luck to you and your Mam.

Keith.

[GinaHParticipant]

Thanks so much for all the support, advice and information. It's nice to know we are not alone. It is soooo useful to know there is a nurse we can contact as, and I don't mean to complain, we have never been given treatment 'options'. We have been told what is going to happen next without explanation (on average our appointments last 2 minutes- seriously!).
At the beginning of November 2011 my Mam was told no more treatment options were available and that she may or may not see Christmas – miraculously she went from strength to strength on steroids alone. The steroids stopped suppressing the myeloma Nov 2012 and I think we were just so grateful that they were prepared to try something else… but I guess it's time to start questioning!
I apologise for rambling, but this is the first time in 8 long years I've found people 'in the know' to talk to.
Thank you x

[tomParticipant]

Hi Gina
Well I dont think you are getting what you and os your Mum Deserve?, its shocking to hear you only have such a short time with the Consultant, Now i am one of those that say "If the Dr Smiles am Happy" but I do know as and when I need to know anything nothing is too much bother from him or his team, am sure i am not the only one that has a Team thats Bloomin Great.

Am very pleased your Mum proved the Dr wrong by going Past Christmas deadline 😀 I wonder how such a poor set up has been running with no complaint? dont get me wrong I think the NHS is a great system 😀 But that only if the Dr has enough time and is willing to give it to his Patients.

I would insist on getting more time to ask and for things to be explained to you both.

Hope all goes well

Love tom Onwards and upwards xx

[Author]

Posts