[kevinParticipant]

Hello all,

Had CDT followed by SCT back in 2006-7. All went well and achieved full remision untiL Nov 11. PP's went to 4 then to 9 in Mar 12 and 17 in Jun 12. Saw my Consultant and decided we shoul start to treat. Since November Vecade had been suggested as the next step. Unlike the first time I was treated I knew what to roughly expect (good in some ways not in others) and learnt more about desease and other peoples treatment and experiences mainly through this site. My thoughts were maybe rightly maybe wrongly that my previous treatment worked as well as it possibly could have with few problems that I can remember. I asked my Consultant if it would be possible to have the same treatment again. My other thought was that if it worked again there were other treatments to try next and that if it didn't work this time then we could move to Velcade. He agreed and I started my CTD last week. Would be greatful to hear anyones opinions, thoughts and experience of my decison.
Thank you
Best wishes to all
Kevin

[eveParticipant]

Hi Kevin
Let us know how you get on,it is interesting that you are having CDT again!!!. I suppose the fact that it was 2006/7 since you had it last time.might make it work again.As you say it will leave you Velcade for another time.

Slim used up CDT plus Velcade just to get to SCT.At the moment waiting for BMB,to see if it has worked.

As for your decision to go down that route and the consultant agreeing,I can only think you have a very open minded consultant,who does listen to you.I can see why ,because it leaves you Velcade for another Day.So good luck Eve

[tomParticipant]

Hi Kevin

Well for my ten pence I think you are going the corect way you had a good remission with it first time around so it should work this time againn and hope it gives you a longer remission, Like I tell my Kids "Save some till you aint none then you will never be without"

I done CDT ion Feb 09 SCT Dec 09 and am still in remission and if mune rears its ugly head again I will talk about going the same route 😀

Keep Well Keith

Tom "Onwards and Upwards"

[kevinParticipant]

Thank you Eve and Tom. Hope all has gone well with Slim. There is more choice available now than when first diagnosed and more in the pipeline so deciding the right way to go can be difficult. Logic tells me I have done the right thing – time will tell. I will this time however take up Gills idea of keeping a diary as i dont recall too many details of how I felt last time. I thought I wasnt too bad but think my good lady may have other thoughts on that.
Best wishes
Regards
Kevin

[tonyParticipant]

Hi Kevin

I was dianosed with light chain myeloma in Dec 2004 and did CTD Plus SCT in June 2005. Relapsed April 2009 but have managed to avoid treatment so far. The closest I came to treatment was in November 2010 when I actually signed up for Myeloma X and got a phone call 2 days before starting treatment from my consultant to say he wanted to hold off until after Christmas as my BMB results were looking better than expected. I like yourself wanted to redo CTD and 100% would agree with your decission to do so. Really hope the treatment goes well for you. Other than my SFLC results (which jump all over the place) I have been stable for some time and will not start treatment until I show CRAB symtoms. When I do start treatment I will again push for CTD.
Regards
Tony

[mhnevillParticipant]

Hi Kevin

I am just finishing my first, successful CDT (six rounds!) Certainly, I concur with you, leave the bif stuff off for as long as possible, especially as first CDT obviously did good for you.

All best wishes. Let us know how you get on. I think it is so important that we run our treatment regime not our Consultants. Fortuately, I have had Consultants who have worked with me. I am about to change hospitals, because Airedale is proving too far to travel and Bradford Royal Infirmary is just down the road. I am hoping that things work out for me there. Is there anyone out there being treated in Bradford?

All best wishes to you.

Mavis x

[DaiCroParticipant]

Hi Kevin,

CDT worked very well for me bringing my light chains from 3,500 to 0 in 3 Cycles… I completed the 4th to make sure and then had my SCT 4 months later.

I have regretted that decision ever since as I was still in full remission with excellent BMB results when I started my SCT. I wanted to wait until the first sings of upward movement before starting the SCT process but my then consultant was quite bullish about the SCT saying it was a 'No Brainer' as far as she was concerned. 😛

This attitude convinced my wife who was frightened that I might compromise my chances if I insisted on staying with my CDT remission. Knowing what I know now I wish that I had insisted… but although it was my choice it didn't seem it at the time.:-(

I hope you get your CDT and run with it if it gets you to a decent plateau… or preferably full remission.8-)

Regards

Dai.

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