Hi Dai, I know I'm hijacking your post but I'm feeling absolutely terrible also. I took your advice and got some Movicol and the constipation issue has now been sorted out. I still get cramps in my abdomen but not as bad as it was. The main problem is fatigue and coincides when I stop taking the Dex starting on the second day. I am also getting…[Read more]

Hi Andy/Steph,
the answers you got seem to have raised a few more questions in themselves and that can't be a bad thing in itself.
Although the Consultant says she has never come across this before I'm sure it can't be totally unique and someone somewhere will have seen it before. One thing is for sure you've got the best brains on the case in…[Read more]

Thank's for that Dai, first thing I did was to go to my nearest supermarket and stock up with Movicol. Things seem to be moving a little today but I want to be prepared and ready just in case.

Thank's again…Keith.

Hi Phil,
great to hear things are working out for you after your 2nd SCT. I had mine in August also but relapsed after only 8 months. I never got the magic zero PP's as I did the first time but that isn't unusual in itself so I battle on.
As for the passing out incident I think it was just a blip on the day. Once I managed to get back on the bed…[Read more]

Hi Andy,
me along with everyone else hopes that everything turns out right for you and you get the answers you deserve.
Like Eve I strongly buy into the Know your enemy stance and have said so on here many times. It's how I've always approached it and always will as long as I live. Burying your head in the sand and living in denial won't do any…[Read more]

Hi Helen,
I agree it's a small price to pay to get the PP's under control so I'm with you bring it on. I had really bad constipation and agonising pain during the first two cycles of Vad (my first treatment) but no problems with my second treatment which was velcade. Have you had any mouth ulcers? My tongue in particular feels like I've been…[Read more]

Hello all,
Yes not a pleasant post Dai but one I concur with. I haven't experienced any problems with constipation as yet in fact the total opposite. Today I took Dex early morning and Rev at 18.30 to see what difference if any that makes.
I've had slight cramps today but not so severe and the diarrhoea has abated and haven't felt so tired.…[Read more]

Cheers Dai,
Been to the Hospital today for blood tests and told the nurse about the fatigue and now extreme diarrhoea and abdominal pain which is keeping me awake. Was told if I have any other bouts then I have to take a sample to the Hospital on Thursday when I go for my Zometa injection. Bloods haven't changed very much apart from PP's which…[Read more]

Hi Andy,
I'm with Dai on this one, it's most important you get all the information you can so you have it clear in your mind and can be part of the decision making process. This is paramount when things aren't quite going to plan.
You want to be leaving the Hospital confident that everything is being done that should be done.

Best…[Read more]

Thank's Dai,
What dosage of Rev/Dex are you on? I have started at Rev 25g/40g Dex 4 days on/off.
Will taking the Rev at night really make a difference to the fatigue issue?
I am also suffering from abdominal cramps although my bowel movement is ok.
As for sweating well yeah I get a bit of that too. If only this blooming weather would…[Read more]

Thank's Andy and Jen for your replies,apart from the one incident Sunday morning I've not since had the passing out feeling but I get a constant feeling of wanting to pass water through the night which interrupts my sleep.
I take Rev early morning so maybe the idea of late at night might be the answer to my sleeping problem.
These drugs are…[Read more]

Thank's Vicki/Tom
Didn't quite hit the deck Tom but it was a close run thing. If I hadn't got back on the bed I'd have been out cold.
I have also developed a pain in my lower back which seems to come and go.
I've met Phil a couple of times and wondered how he was doing,I think he relapsed around the same time as me first time around. This…[Read more]

Hi Andy,
Sorry to hear about the rise in your PP's but pleased you had a good break in the Lakes.
I started the Rev/Dex on Tues and feel absolutely wasted. The whole of my body feels numb but at least the lump on my head seems to be disappearing. I'm back at the Hospital for bloods and Zometa on Thursday when the PP's will be monitored. Mine…[Read more]

Dear Siobhan I'm so so sorry to hear of your sad news. I didn't know your mum personally but through her many reply posts to me I certainly felt I knew her very well. She was invariably one of the first to reply to my posts with very kind and positive words and I'll miss her dearly as I know everyone else will who are regulars on this forum.
I…[Read more]

Hi David,
that's great news…0.04 rise PP's is nothing to worry about as small fluctuations are irrelevent in the great scheme of things and as long as the doc is happy then that's all that matters.
Keep living for the day and don't neglect that water intake just to achieve that magic zero you still aspire to LOL.

Best wishes with…[Read more]

Hi Tom/Elaine,
Great positive news for you both and I'm sure you'll make the most of it.
Drugs free and fewer Hospital visits is fantastic news and something we all aspire to.
I'm back on the old treadmill again but I still won't let it get me down,just have to make the best of things.

Take care.

Keith.

Hi Deborah,

I had 8 cycles of Velcade leading up to my 2nd SCT last August. I have to say I had very few side effects apart from fatigue during the first two cycles and spasms in my right hand when the Velcade dosage was slightly reduced after four cycles which seemed to do the trick. The downside was the remission only lasted 8 months but…[Read more]

Hi Eve/Slim,

My platelets and Neuts were also very sluggish and slow to rise. I had both Blood and Platelet transfusions after being re-admitted into Hospital with Neutropenic Sepsis and then contacted e-coli which was quickly sorted out.
My platelets eventually topped the 100 mark but only just and nowhere near the heady heights of 130 first…[Read more]