[nerParticipant]

Hi all. Hope my post finds you all well. I havnt posted for a while on here but i have been reading your posts and catching up with all your news.
My mum had her sct on the 24th july and although a bit scary at times (she had an infection a few days post transplant which was unpleasant to say the least) she is now home and seems to be doing well. Mum is on the myeloma 11 trial and is now facing a decision as to continue in the trial or finish with it. If she decides to continue she will be randomised once again where the outcome will either be no maintenance or maintenance with lenalidomide. She has been told that the risk with the lenalidomide is that when the myeloma comes back this would usually be the treatment and by then her body may be immune to it. Mum is quite confused and is very worried about this decision.
I would really appreciate it if anyone has any advice or has maybe been in a similar position??? We're all struggling again with the reality of the situation.

All my love to you all.

Ner xxxxx

[MothasParticipant]

My advice would be that if you have the opportunity to have maintenance treatment take it. There does seem to be an increasing amount of evidence that maintenance alongside an SCT gives you a longer remission.

This disease always comes back and hopefully by the time your mum needs further treatment recently released new drugs will be available.

[eveParticipant]

Hi Ner

Sorry Tom but I think Ner should really do her homework on this,if you go to off topic into Stans post on coming home ,there is a post from me there.!!!!,save me explaining again.

I can see we're you are coming from Tom,in terms of extra time,but you do have to think of the quality.plus on the down side if you look at Helen who was on maintenance and look at Slim who was not.Helen only got a few more months than Slim.

I know this does not apply to everyone,Helen and Slim were just unfortunate in there Myeloma is more complicated.

It has to be your mums decision ,but please go into Myeloma beacon forum, plus go back on old post with Revilimid ,and then you can make your own mind up. Eve

[VickiParticipant]

Hi ner,

It really is your personal decision. My Colin went without maintenance as his quality of life on it was tough. He made the decision and I supported him. It's a risk I guess but these conditions are so personal, and unique, who knows!. That said they still keep an eye on you, do the checks, and leave the rest to chance. Good luck to you. We wrestled this decision, felt worried at the time and now don't think…..too much! …..about it

Vicki and Colin xx

[HelenParticipant]

Dear Ner
I opted to take the maintenance Revlimid and was randomised to it, I had 17 cycles post SCT and was called relapsed in April, looking at my blood results they had slowly crept up from 19 in October to 55 in March, Then 155 in April .. I'm a very low secretor so the numbers are small.
We will never know if it slowed the disease down or if it just didn't really have any effect and My light cains which were wiped out at transplant just gradually made their own way back. Anyway relapse was confirmed by bmb and I started Velcade in May.

I think you have to choose very carefully here, maintenance works for some, and I was keen to give it a try, but we just don't know who it will work on! The armoury for myeloma is disappointingly small and there is a real argument for saving the heavy artillery for when you need it….
I for instance will not be able to try Revlimid on 2nd relapse as we know it doesn't work for me now but….. And I hold out for this and future developments.. Pomalidomide and Carfilzomib are just around the corner and… God willing I plan to be there to try them out.
Hope this helps
Helen

[eveParticipant]

Hi Helen

Well said,you knowledge and wisdom is missed on here!! Love Eve

[nerParticipant]

Hi everyone,

Thank you so much for all your responses,your all very kind and helpful. Mum still hasnt mde her decission and is concentrating at the moment on recovering from the SCT.She seems to be getting stronger each day and her mobility is greatly improved. She asks me for advice and i find it so hard to answer as i just dont know what advice to give. She has a bmb coming up in october and then they will need her decission.
I continue to research as much i can and keep asking the consultants and research nurse for help but i suppose they can only provide some advice.
I will keep you updated.

Hope my post finds you all well. Ive tried to read as many as i can tonight while i have a little time!!
Take care everyone and thank you.
Lots of love
nerys xxx

[phil47Participant]

Hi Nerys,
I had my SCT in Sep 12 and was randomised to receive Revlimid and Vorinostat in January. I still had detectable paraprotein (9.4) but it was stable post SCT. However, although I felt no side effects from my maintenance treatment I became neutropenic at the end of the first 2 cycles and remained so for a month or so after the 2nd so my Vorinostat was stopped and my Revlimid dose reduced. I then developed a skin rash that they said was due to the revlimid but I wasn't convinced but they stopped my treatment altogether. My paraprotein then showed an increase on my blood test at beginning of July. Ive now gone back onto Revlimid at full dose with no side effects and we will see if that stabilises (or reduces) my pp levels. If it does that will convince me that maintenance treatment is worthwhile.
Hope all goes well
Phil

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