[CarolsymonsParticipant]

Have just received results from end cycle 4…Paraprotein no longer detectable..yeah! iga 4.8 (normal 0.7 to 4) yeah again! pesky lambda light chains 128 (normal 5.7 to 26.3)

Because of the delay in getting results I have already completed cycle 5, but results not in till next week (but even then I will have to do battle with the haematology nurse to get them before the next app't in 3 weeks…..aaaaargh!)

My question is this…why am I being told by the registrar that I have to complete 6 cycles of CDT when clearly the drugs have done their work……and they have made me soooooooo ill. She says everyone at Ealing does 6 cycles but I am reluctant to poison myself for another 3 weeks for no further gain.

I am sure I have read on this forum of other people stopping drugs after 5 cycles with similar good results. Help ……the registrar just would not listen to me!

Carol

[HelenParticipant]

Dear Carol
Your results are going in the right direction but you have raised light chains too so 6 cycles might bring them down to a much lower level. The lower the levels of pp and light chains , then the fewer mm cells in your bone marrow when they harvest is the theory.
Just hang on in there
Helen

[AliParticipant]

Hi Helen

How are things? Have you finished your treatment? Questions, questions, sorry:-) its just reall
y great to see you on here. Time to get up……. Got to dash. Just wanted to say hi xx

Sorry to hijak your post carol. It seems the drugs are doing their job. Just 3 more weeks, see if they can do even more good.

Love ALi xx

[CarolsymonsParticipant]

Thanks everyone I so needed reassurance…I just hate these drugs even though I know I am fortunate to have such good results, but then my numbers did start off very low (iga 18 lambda 549). I spoke to the nurse again yesterday who phoned the consultant and yes it is those darn lambda light chains and the abnormal ratio which makes sense now of course.

I have procrastinated for 2 days as I have my usual temp spike and annoying cough when I breathe (I get this twice every cycle with steroid withdrawal) but neutrophils are still over 3, so hoping I get rid of this today. I promise I will dutifully but reluctantly swallow the 40 tablets scheduled for day 1 tomorrow and visualise the drugs killing those remaining lambda light chains……well that's the plan!

Carol

[HelenParticipant]

Hello Ali
I'm ok …. Finding Velcade hard to deal with …physically tired and my hair is falling out again:-( but i am nearly at the last hurdle…. Only 1 more cycle to go, blood results are really good though…….. They just have to stay down!
I'm a bit bored with it all too….not being at work but not even able to do the garden or housework either, have found my hands too tired to knit much, so it's all the old films and dramas and lunch out to keep me going. It's a very different life.
How's your mum? You must be near to going on your family holiday? Where are you going?
Love Helen

[AliParticipant]

Helen

Its great to hear that the Velcade is doing its job, but im really sorry to hear that you are losing your hair (is it just really thin, or is it like after Melphalan?)

Im sure it is quite a change for you, being at home rather than work. As I tell my kids – you will get square eyes watching all that tele! Nice to be a lady that lunches though for a while! Once you regain your strength you will soon be doing the chores.

My Mum is good thankyou. Went to see the consultant yesterday and she is still in remission – great news (we don't ask for the numbers anymore ) Mum stopped the maintenance Vorinostat/Revlimid and feels better for not taking them too. Her only real complaint is fatigue. She doesnt sleep well at night (this is nothing new) and is exhausted in the afternoons. We asked for some sleeping pills and reluctantly the consultant wrote out a prescription, we shall see if they help – or if she takes them!

Holiday at halfterm, cant wait! Istanbul, Athens, couple of Greek islands then back to Turkey for Ephasus. Think it will be fairly hectic,but we are just looking forward to being together!

Again, lovely to hear from you Helen

Love Ali xx

[mhnevillParticipant]

Hi Carol

I am now over a year post CDT and am at last beginning to feel more like my old self. I go by my colour and at last I have lost that greyish tinge!

Hope you rally quickly once the six cycles are over.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Helen

Had been thinking about you so glad to see your post. Hope you soon come round post Velcade. Are you intending to go back to work?

Lots of love.

Mavis xx

[HelenParticipant]

Hi Ali
It's really thin and I can see my scalp! Horrible, and as you know, I am terribly vain! I've a new form for a wig but can't bear to go and try them on again either, shall be sporting many new hats soon I think!
Not long til the holiday now, hope it is fantastic….. You must visit the roman cistern in Istanbul if you don't go any where else… It's marvellous. I love it.

[HelenParticipant]

Dear Mavis
I'm nearly at the end of it and it can't come soon enough, my sore feet and bad temper are most annoying….. To everyone! I'm not a good patient..in fact, I'm really dreadful…. I keep trying to be dignified and resigned with the situation but end up snarling and being horrid to everyone, then I feel guilty as they are only trying to help! I'm best left alone…… Then I feel neglected! So it's a no win situation for all.
Yes I will go back to work and see how I get on, if it all gets too much I can retire on ill health grounds, but I quite like the discipline of work and I have discovered that I like planning the holidays and spending the salary on ourselves for the first time since the children were born. ( though we still have one of them on the books -hopefully he graduates next year)
I hope you are well since finishing your chemo?
Love Helen

[mhnevillParticipant]

Hi Helen

Well, I admire your determination to return to work and as you say, having a bit more financial freedom is great. We have found this since we retired. Just a shame MM has made traveling so much more difficult for me.

Still, I am still in remission a year after CDT and can't believe it is now over three years when I was first diagnosed. We have just got back from our third visit to my daughter in Luxembourg this year! Takes some planning and we hate the long journey, but at least it has meant we could see the family. My youngest grandson, three yrs, loves riding round the streets on the front of my electric scooter.

I was in clinic yesterday, for my regular Zometa infusion, and there was a man there having his fifth Velcade injection. He had been having severe pains in his legs and there was some talk of reducing his Dex dose. In the end they didn't. I thought, this could be me sometime in the future! Doesn't pay to think too far ahead does it?!

Like you I question my mood swings and I'm not on Dex! Maybe some of it is just the uncertsinty that is part of MMer's lot!

Take care. Hope things work out well. Keep in touch.

Love.

Mavis x

[HelenParticipant]

Thanks Mavis I will do my best? You keep fit. Love Helen

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