[TinaPParticipant]

Hi all,

Well eventually I have started on the long road. Had another bone marrow sample taken yesterday and my first Zometa infusion. All ok so far although my hip is still a bit sore.

Started the day with 40 tablets!

Any advice from you 'old hands' who are further down the road would be helpful.

Thanks for your support
Tina

[BADGERParticipant]

Hi Tina
hope your journy is a good one I struggled mostly with the dex and had mood swings and found I could not sleep very well I took dEX with yogurt which made it easier to swallow I managed to take 100mgs of thalidamide for a year after CDT until my feet got red hot so I had to stop good luck
And keep well:-)
Regards Jo x

[tomParticipant]

Hi Tina

Good Luck on the CDT I started my CDT in Feb 2009 and had 5 cycles then onto my SCT in December 2009 😀

Now My CDT well I was tired and week lost weight and taste buds were not working 🙁 think I had to go on sick on my end of my 3rd cycle (just too tired) so I will tell you listen to your body when you feel tired sleep and when awake (in the middle of the night) post on here and we will catch it in the morning He he.

Its a rocky road that you are going on but well well worth it in the end 😎

Good Luck on your road to remission girl 😎

Love and loads of hugs

Tom "Onwards and Upwards" xxxx

[DaiCroParticipant]

I had several side-effects with CDT but nothing major… at that time nothing to compare to it either.:-)

Thing is, while it was a bit rough at the beginning I have to take into consideration the fact that I started treatment with a Kappa Light Chain reading of 3,500… so obviously the CDT was having to work hard… and work hard it most certainly did because I was down to 'negligible' after only 3 Cycles and in full remission after 4, when it was finished. Due to a serious infection with my Hickman Line which had to be replaced, I missed my Stem Cell Harvest window and had to wait 3 months for my SCT. At the start of my SCT I was 6 months into my CDT remission and still going strong… I would have loved to have known how long that would have lasted as my SCT failed after only 10 months. I will never know but I still feel the rush into the SCT process was premature.

Dai.

[wendyduffieldParticipant]

Hi Tina

its hard to manage all the pills isnt it especially with the shock of the diagnosis and everything else you have to take in. A pill box thing might help.

I was assigned to CTD on the myeloma XI trial and had to stop after approx 1.5 cycles due to side effects of Thalidomide such as nerve damage and skin rash. However everyone is different and some people dont experience any major issues. The most common ones are fatigue and constipation, take sennakot or whatever laxative your doctor prescribes you even if you dont feel constipated. I wish I had followed my own advice as I had terrible problems!

Good luck

Wendy

[EvaParticipant]

Dear Tina,
I think that looking back on it, I wasn't told enough about what dex withdrawal can do to you. I was afraid when I felt very sluggish after I went off dex each time. Because my onc had seemed to imply that really I might have no symptoms or side effects from CDT, I thought something was terribly wrong with me when I felt bad. I've now talked to a number of people on CDT, and I've realised there can be side-effects.
Dex can make you feel a bit 'wired' for a few days. When you go off it, you might feel rather tired as your adrenal gland has to start working again. If it's really bad, the dose of dex might have to be adjusted. There has been one overseas study in which patients were given either 20mg or 40mg of dex. The arm of the study with 20mg had a better survival rate, so sometimes, less is better. It's whatever gets the results without too many side-effects. I remember that at one stage I passed out briefly when I was on the max dose of dex. I was also a bit dizzy from the Thal though I enjoyed its sedative properties. If you are on Dex for a long time, then watch what you eat. The last time I was on dex was for a period of nine months. I was so so ravenous that I ate more than I should have. I regret that now as I'm overweight for the first time in my life. I can't fit into my clothes and losing weight seems unusually difficult even when I eat very little. Perhaps exercise is the key.
I hope you will share any side-effects if you experience any, rather than thinking you are weird or wimpy.
Best,
Eva

[TinaPParticipant]

Hi Eva,

Day 2 and the only side effect in loss of appetite. I feel very tired and have a sleep in the afternoon. But I have been doing that for a while now.

It is a bit daunting faced with all the tablets! My haemotologist gave me a spread sheet to use. I find it very helpful. Expect I will get used to it soon.

Take care

Tina

[TinaPParticipant]

Hi Tom,

Thanks for your support, it seems a long road at the moment and I'm only on day 2!!

Thanks for the hugs.

Love
Tina

[TinaPParticipant]

Hi Wendy,

Thanks for the advice on laxatives. I have some already here, and took a dose last night.

Day 2 and I have no appetite. But still trying to drink loads.

Take care

Tina

[tomParticipant]

Hi Tina

Dont worry about the sleep in the afternoon I do that and am only 56 and not on any meds these days Ha ha.

Keep strong and sleep often

Love and ((Hug))

Tom "Onwards and Upwards" xx

[mhnevillParticipant]

Hi Tina

I am just ahead of you. Day 14 of second 21 day regime. Only side effects swollem ankles, slight taste change and very sleepy, but this could also be because of new pain control. Glad my hair has stayed thick!

I haven't had any difficult effects to Dex yet. Like you I wonder why we have to take so many tablets and some of them are so small. I find getting my head round the schedule ddifficult. I nearly forgot my Cyclophoshamide last week.

Keep in touch. I shall look with interest at how you progress. Are you hoping for a SCT? I am not expecting to go down that road.

Love Mavis x

[ali49Participant]

Hi Tina,
I'm on day 7 of my first CTD cycle. Glad to read Eva's notes on the dex because I've noticed the swing from high to low. I got so much housework done at the weekend, I'd cleaned the kitchen by 8.30am! Now I feel a bit 'on-edge' and fuzzy headed!

It's great that we can all support one another, hope all goes well for you,

Alison

[TinaPParticipant]

Hi Alison,

Also on day 7 and feel really tired. Hope the energy comes back when I take the dex again.

Seems its the 'norm' to feel like this. At least we can chat to oneanother
about how we feel.

Take care

Tina

[TinaPParticipant]

Hi Mavis,

Yes SCT is the ultimate aim for me. I feel really tired and 'down' at the moment. Hope it improves when I take the dex again.

No change to hair either.

Take care

Tina

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