[judy2Participant]

I have recently been diagnosed with lambda light chain MM.  I am on a clinical trial CCRD – anyone else on this trial?

[wendyannParticipant]

HI judy,
I also have lambda light-chain myeloma but I am on CDT chemotherapy with a view to stem cell transplant if all goes well. What does your clinic trial CCRD involve?

[judy2Participant]

Hello Wendy

CCRD involves IV chemo twice a week for  3 weeks in each monthly cycle with a drug called carfilzomib.  Together with Lenalidomide and steroids.  Quite a cocktail but sadly not the sort I would rather have!  After 4 cycles I have responded well and, like you, will have a stem cell transplant in due course.  Good luck with your treatment Wendy.

[CarolsymonsParticipant]

Hi Judy and Wendy

I have iga lambda light chain myeloma and just today have received another set of good blood results, still staying in stringent complete remission 6 months after my SCT. My initial therapy was 6 cycles of CDT which while that obliterated all of my paraprotein didn’t manage to get the lambda light chains down to normal. However, after being blitzed with the etoposide before stem cell collection and of course the deadly melphalan before the transplant, my light chain ratio has been normal ever since. Fingers crossed it stays that way now for a long time. The sweetest words I have heard for a long time came from my consultant today saying next appointment in 3 months! Hallelujah! 3 months……excited much! So excited that I zipped into central London and spent an hilarious few hours watching “Dirty Rotten Scoundrels” at the Savoy Theatre….great show!

Carol

[eveParticipant]

Ho Carol

You make me laugh!!! Thought that plane to ozz was this month????
Phi Judy2 sorry cannot help you,out of touch with new trials,try going into new trials on here,might be some help!!!!!

I can say this journey is like a roller coaster so many highs and lows,you learn to ride with the flow,you will get lots of help on here and also from Ellen and Maggie phone number top of page,hope you have a good ride.

Why worry about tomorrow and spoil today. Eve

[CarolsymonsParticipant]

Hi Eve

Can you believe it? Work finished last Friday, consultant appointment today, I am ready and raring to go to Oz except for 1 huge problem….no bloody contract for the sale of this flat. Almost 5 months now and I am in limbo. Cannot resign my job, cannot book my one way ticket out of London so here I sit, waiting waiting…..I don’t want to be critical as I am a foreigner here, but the real estate system in this country is ridiculous! In Australia you have a 10% deposit on day 1 with a 28 day contract usually and it us all done and dusted. So far I have missed my eldest grand daughter’s birthday last Monday, mum’s 86th birthday yesterday and at this rate I will even miss the youngest grand daughter’s 1st birthday on 9 August….remember I haven’t even seen this little one yet due to stupid myeloma! NOT HAPPY! Going to Bosnia on Saturday to see my husband and to sulk over there for a week…too depressing sitting here alone.

Carol

[eveParticipant]

Oh my that’s awful!!!

I agree my daughter in NZ sold here house 10 percent deposit,done and dusted !!

My youngest daughter has had the chain broken 4 times,moving anyway! Does need up heavily .

Sorry for taking over post Judy,you will find in time you will make cyber friends,!!!?,Eve

[judy2Participant]

Dear Eve

It’s taken me a while to get back on this site but just to let you know that I’m not at all possessive about my posts!  Everyone seems to be so positive about the ‘roller coaster ride’ that we’re all on.  I’m a very positive person and just biting the bullet and getting on with it all.  I’ve had good news and have responded well to the initial chemo and now waiting to hear when my stem cell transplant will be.  Must say I’m not looking forward to it but needs must!

Bye for now

Judy

 

[judy2Participant]

Dear Carol

Sorry for delay in replying to you and it’s good to know I’m not the only one with light chain myeloma.  When I first told I had it (5 months ago) I was looking for pretty little lights in my urine!  Doh.

I’ve responded well so far and after my bone marrow biopsy reply will be on the list for a stem cell transplant so things are moving ahead for me.

Good luck with selling your house and hopefully you will soon be with your family back in Oz.  We spent last Christmas in Sydney and I would move there in a heartbeat.  Loved it.

Best wishes, Judy

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