[DizzylizParticipant]

Hi all,

Kev takes dex 40mg once a week 8.am doesn't sleep the first night grumpy old man for a couple of days,
But then the crash! And we both dread it, I also think it masks a lot of his infections he's been having as they
Appear about the fourth day off dex! It's good in some ways not in others!!

Dexatude! I think it should be in the dictionary?

Keep well liz & kev xx

[stevo72Participant]

Hi guys sorry for delay in replys hope I find you all well I'm just starting my dex comedown yippee lol thanks for your input seems to be a mixed bag of opinions ill have to stick with I hate it but I gotta take it is the new motto, I've been busy trying to find out the criteria for sct as my kidney function is not great and oncologist says no until they improve, but I've noticed a couple of people on here have been offered sct even though they have the same prob as me,seeing as there is no compare the sct.com I thought I'd ask here any ideas? Love and health to all

[eveParticipant]

Hi

I can only tell you about my hubby,admitted with AKF,but kidney function improved,after a few blips,pneumonia which left him with wholes in his lungs plus blood clots,resulting in injections for 8 months, finally,referred to Kings for SCT.

Had SCT,but a reduced dose of chemo,enough to do the job,it worked SCT successful .
He had 2 strikes against him,kidneys,plus lungs,I think every one is amazed how well he has done,in one hand he was a smoker foe many years,but also very healthy as ex marine who ran marathon ,plus he had the attertude ,he was going to be first,has never regained his health,and bones so poor,never complains just excepts,this for what it is.

Gave up smoking 8 years ago,and drinking gave him up,when Myeloma. Kicked in. Eve

[stevo72Participant]

Hi eve thanks for reply sounds you you've both been through the wars, I don't suppose you remember what hubby's kidney function levels were at time of sct? Happiness and health to you both x

[BADGERParticipant]

hi Steveo

my kidneys were working only at 20% when we discussed SCT they still are I was told there was every chance with the chemo that went along with SCT it would probably put me on dialysis I didnt want to take that chance so no more was said hope this helps you
Regards Jo

[EvaParticipant]

Hi Steve,
I can't comment on kidney function as I still had enough to cope with the transplant in 2008. My husband tells me that during the transplant I swelled up hugely as if my body was having probs getting rid of waste. My creatinine readings before the TR were normal. Afterwards, the swelling went down. Admittedly, they were pushing a lot of liquid through my system via iv. in order to keep me well hydrated.

On the topic of steroids- they are an important tool as they really increase the chances that a treatment will work. However, studies overseas have been uncovering that often patients did better on half a dose of steroids, not just in terms of immediate responsiveness, but also in survival. It may take a while until these trials are replicated here and their validity is tested, though I have already seen signs that lower doses of steroids are sometimes used in the UK.

Unless the mechanism of steroids is understood, or at least, the side effects are discussed, some patients might be at risk of assuming that they are in a dire state at the tail end of each cycle. It certainly apppears that way. I still can't believe that suddenly it feels as if the gravity on this planet has increased hugely, and that no matter how motivated I am, after a number of cycles of steroids, I reach a stage where I look upon a small staircase with the same awe as the pinnacle of Mt Everest. On one occasion, I have also experienced 'myopathy' while on steroids. I had to give them up for ten days and then I was better. While I had myopathy, I lost control of my muscles to such an extent that I couldn't get up off a chair or the loo without assistance – a kind of disconnect with my muscles. After a break and with a much lower dose of steroids in me, I was able to continue with treatment and not only get back muscle control, but also respond well to treatment.

I hope that this will be comforting news to some of you who are struggling with this treatment. Oh, and while I'm consuming steroids, if I haven't slept for a couple of days, then I won't hesitate to take a sleeping pill.

Eva

[sharonboyleParticipant]

Hi my name is Shaon and new to this site as well i am a carer for my mum who has been diagnosed with mm in dec and is now just on second round of CDT. She seems to suffer just with sore bones 2 days after coming off dex, but can i ask if anyone suffers tremors on thalidomide, sometimes it is worse than others, also after her infusion of zometa she was more shaky and really sore bones the next day any advice welcome,This is so hard as she smouldered for 3 years was totaly well and full of energy but pp jumped from 14 to 29 in six months so following a bone maow it was decided treat was required and she has not been great since starting and to make matters worse we lost my dad suddenly at xmas time so a lot to get our head around.She has no kidney damage and was only slightly anaemic which has resolved in the last week now hb up to 11.4, no results from skeletal survey which was done in dec so hope no news is good although she is suffering with neck pain so waiting on mri, she was given gabapentin but felt they knocked her off. Sory came on to ask advice about one thing and have gone on and on just finding this all so hard to deal with just now but reading all the positive posts is def a lifeline thanks again

[EvaParticipant]

Hi Sharon,
I had tremors after a couple of cycles of CDT, but I thought that the shakes came from the steroids rather than the Thal. I guess I can't be sure, though a year ago when I was on Thal alone my I saw no evidence of trembling. When I'm on 100mg or more of Thalidomide a day, I feel dizzy and I tend to drop things. Also, an hour after I take my dose I'm tired. This lasts for most of the entire next day, and then, I have this period of one hour – my magic hour, before I take my next dose when I have more energy…
Best,
Eva

[Author]

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