[DebsParticipant]

Hi all,

Just thought I'd give an update to say that I'll be starting CTD (first time!) in 2 weeks. I've had some back pain for the last week or so and my consultant seems to think now is the time to hit it and hope that we can stop it before I see any end organ damage.

Feeling surprisingly positive about it all (probably because I don't really know what will hit me when it kicks in!) and almost pleased that after a year of 6-8 week appointments, that something is happening and that I have some control back over my body….even if it will be with a huge load of drugs!!!!

If anyone has any CTD advice, would love to hear it (though perhaps not anymore about the side effects of Dex which alreadys scares the living daylights out of me, and even more out of my husband!!)

Thanks guys
Debs

[michelleakitt29Participant]

Hi Debs

At least something is now being done, your life seems to have been hanging in the balance for a long time now.

Good luck with it all, and to be honest My mum doesn't seem to have much trouble at all while she is on dex, not sure why when I read what everyone else goes through lol, Most people get on relatively well with CDT think the worst thing for mum was perepheral neuropathy.

with love michelle x x x

[ElizellenParticipant]

Hi Debs!!

I had no discernable side effects from my CDT cycles at all. I hope you will be the same.

Eliz
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[GayeParticipant]

Hello Debs – I'm not sure if I should be here as I am way over 50 but just wanted to say good luck for the start of your treatment. I only had a year of smouldering and then the b****r needed treatment. I have not had CTD so can't answer your questions but I do hope that it treats you kindly. As for the dex,:-S well I'm afraid it has to be endured, but it is a means to an end and one that I hope will give you a complete and long remission. You deserve to have that.

Good luck you know that we will be rooting for you all the way8-) .
Love, Gaye xx

[MariParticipant]

Good luck Debs, I am glad you know where you are now and can go forward with the CTD positively.The one thing I can say from my experience of seeing Steve on CTD is that the time goes by very quickly and when you come off it the side effects disappear very quickly.

Thinking of you and wishing you well,

love Mari xx

[TinaParticipant]

Hi Debs,

It was great to meet you last week, good luck with the table sale tomorrow. Patrick didn't suffer any side effects worth mentioning and like Mari says the time seemed to go by very quickly.
All our very best

Tina X

[DebsParticipant]

Thank you to one and all!
Gaye, please don't ever apologise about giving advice on the under 50 title….I wasn't really sure where to post this one, and to be honest age is irrelevant isn't it. Not always, but definitely on the treatment side!!!

It is good to hear about the fact that a number of people didn't get side effects.

We told the kiddies today but given that they're only 4 and 6, I don't think they really understood. Which is a good thing. Our 4 year old got a bit concerned when we said I'd be in hospital for a little while (we didn't want them to think the medicine hadn't worked at the end of the CTD when I go for a transplant and thought by telling them all upfront they'll know it was expected) but he was happy when I said it wouldn't be for long and that he could visit and we could talk on Skype like he does with one of his aunties and nieces.

Tina, thanks for the items for the tabletop….I'll let you know how it's gone when I've recovered!! I have to say, I think doing the 3 Peaks was easier than organising this!!! And probably more enjoyable despite the photos and all my moans!

Debs x

[DaiCroParticipant]

Hi Debs,

CDT must be imminent, so a quick note to wish you good luck and send you some positive vibes.

My body was near enough broken, with rampant and ravaging bone deterioration and very limited mobility as constant companions when I popped the first pill (cyclo) in May '09. 3 cycles later there was no discernible trace of Myeloma; after the 4th cycle I was told I was in 'virtual' remission.

17 Months down the line from that first pill (harvest and SCT in March included) my problems are all related to the damage done before the pill, not to the disease itself.

I felt a tad nauseous for a day or so a couple of days after each C but anti-nausea pills held that at bay and the only problem I had with D was in dealing with the sheer number of the little blighters. I though of the T as the magic potion, the miracle pill and took them with hope and relish.

CDT was a miracle for me and I hope it has the same effect for you.

My MM (or My My as I call it) might come back next week, it might stay at bay for a number of years and coming to terms with that fact is my biggest challenge, everything else is just life and I deal with it… and I am grateful, beyond measure, for that life, challenges included.

Dai.

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