Hi Charlie

If you click on your own name to go into your profile page, the word "messages" is on the right hand side. Click on that and it will take you through to your inbox.

🙂

Good to meet you Peter, even under such unfortunate circumstances.

You've got the same positive attitude to MM that I've had from the start.

I had 6 cycles of CTD and a STC and like you, tried to carry on as normally as possible.
My hospital team are wonderful and even though I'm now in remission and don't have to see them very often…[Read more]

Hi Tina

I think the initial relief of finishing 6 cycles of CTD made me feel good to start with anyway, but feeling not 100% after just 4 weeks is quite normal. I had trouble getting to sleep at night and kept waking up every hour or so as soon as I stopped taking the thalidomide.

Fatigue and tiredness is natural too. If you sit and think…[Read more]

Hello Elfriede

You sound like me. I loved to travel the world before my MM diagnosis but obviously have had to stop temporarily. However, I've had a couple of short breaks in the UK.

Stage 3 Myeloma probably means that although you feel good, your bones and organs are at a weaker stage than mine.

I had my SCT 6 months ago and when I had…[Read more]

Hi Charlie

Just to say that I have sent you a couple of private messages. They should be in your "inbox".
Michele x

Hello Bill

What you're experiencing is very interesting and like me you obviously think the link is too much of a coincidence to be pure chance.

Out of interest, does your mum know anything about her parents/grandparents medical history? May be worth doing a bit of "Family Tree" research like I have.

When I was on CTD I always took the Chemo tablets and the Dex. with my breakfast first thing but was advised to take the Thalidomide in the evening a couple of hours after my tea because of the drowsiness they cause.

Fortunately I didn't have any reactions when taking any of the pills but would have asked about shuffling times around if I…[Read more]

Tell them you'll be able to rent-a-crowd of pilgrims if they want some extra audience members! 😀

Hi Vicki & Colin

I personally found my 6 cycles of CTD far more gruelling than the STC. In the weeks between finishing treatment and starting all the STC stuff I felt generally a lot better but did have sudden attacks of fatigue which I knew was to be expected. I think the thalidomide I was on must have acted as a sleeping pill too because as…[Read more]

Well done Paul.
Like Tom said keep as germ free as you can. My husband David turned our house into Fort Knox when I first came home. We were so very unsociable but our friends and family understood why we were like that!

You'll no doubt feel a bit weak and feeble to start with so don't do too much. Rest whenever you feel like it, although I…[Read more]

Hello Keith

I'm so sorry you're having so many problems which seem to be caused by dex.
When I was on 6 months of CTD I hated the days when I had to take the dex. They were on days 1-4 and then 12-15. On the first 4 cycles I took 20 2mg tablets each dex day. Then I noticed that my feeling bad days were expanding every month so I mentioned it…[Read more]

Hello Pat
If your doctor suspects myeloma he/she should have ordered the appropriate bloodtests that would help diagnosis. When I started showing my symptoms my bloodtest results immediately rang alarm bells in my doctor's head and after a Bence Jones urine test too I was referred to a specialist within 24 hours. I then had a bonemarrow biopsy…[Read more]

I hope you don't mind me resurrecting this thread, but being fairly new to the site I've only just spotted it.

No matter what the specialists say, I'm convinced that there is a hereditary link with bloodcancers.

I was diagnosed with MM in May 2011, my father died in 2009 after a 13 year battle with non-hodgkins lymphoma and his father died…[Read more]

Charlie. Believe me, we all know how you're feeling at the moment. I was as fit as a fiddle before I was diagnosed in May 2011, so nothing could have surprised me more when I was told I had MM. I'd never even heard of it. When I started CTD I was still getting over the initial shock and all my thoughts were very muddled and illogical. I didn't…[Read more]

I hope everything goes well Chris. I had my stem cell mobilization day last December 19th. I was attached to a drip from morning 'til late afternoon receiving a whole cocktail of things. It was the most tiring day I'd had for a long time but at least I didn't have to spend the night in hospital. I gave myself the GCSF injections at home which…[Read more]

Thankyou all for such a lovely welcome.

I look forward to participating!