[MicheleParticipant]

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 tried not to sleep too much in the daytime so that I didn't mess up my nights sleep pattern.

Be aware of feeling a bit emotional about the whole isolation experience too. It was most odd with me. I couldn't bear to touch anything I'd had with me in hospital until it was washed, I didn't touch my laptop for at least 3 weeks because it reminded me of my "prison" and I didn't watch any TV programmes I'd watched in hospital for ages. Very strange but very real!

Take it easy and keep us informed of your progress.

Michele x

[MicheleParticipant]

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 to my specialist and for the last 2 cycles I was on 20,20,10,5 each time. It did improve my good/bad days ratio.

The possibility of developing diabetes was never mentioned to me. My appetite was always surpressed whilst taking them, then I found I was ravenous a couple of days after stopping them. It took a lot of self control not to give into the cravings and put on loads of weight. My face always puffed up though and I looked like a chipmunk for a few days.

Being a newbie I don't know anything about you and what stage of treatment you're up to, but all I can recommend from experience is whatever's thrown at you during treatment, just tough it out and keep reminding yourself that your body will come through it all.

Take Care.

[MicheleParticipant]

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 that confirmed suspicions and my CTD treatment started the next day.

As Jean said, there's no point telling you not to worry because you naturally will BUT even if myeloma is definitely detected, don't go into an instant decline. There's so much that can be done to help you and after treatment you'll hopefully bounce back as well as I did.

Let us know how things go.
XX

[MicheleParticipant]

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 in 1964 with chronic leukaemia. My aunt also has a blood disorder.
Too much of a coincidence for me.

I therefore take the attitude that I was always destined to have MM (or something similar) and could have done nothing to prevent it happening.

[MicheleParticipant]

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 even want to leave the house for a long time. It had a dramatic effect on me emotionally too. Good research done mostly on this site plus help from my specialist and community nurse helped me understand that a MM diagnosis is not the end of the world. I was told from the start that at the moment it's not curable but it is VERY treatable.

CTD was pretty grim at the time but I can assure you that all the side effects you get are TEMPORARY. When the drugs have done their job you'll feel your old self again.
Take everything one step at a time. Concentrate on getting through CTD before you start thinking too much about the next stage.

I had a weeks holiday in Wales during cycle 4 and everything was fine. I just took my pills with me and enjoyed myself.

I had my STC nearly 6 months ago and I'm feeling great, making plans for years ahead rather than limping from one 3 monthly appointment to another!

Take it from me, your life will get back on track. Try to stay positive and keep asking as many questions as you like. We're all here to help in any way we can. XX

[MicheleParticipant]

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 saved a lot of hassle, then had my harvest on 28th December, Much to my relief 4.6 million cells were collected in just one session so I didn't have to go back again. They were split into 4 bags ready for 2 SCT's. The day wasn't too bad at all. A nurse stayed with me all the time and talked me through every procedure including what would happen when I had the SCT. The only downside was the rubbish on TV that day!!!!

[MicheleParticipant]

Thankyou all for such a lovely welcome.

I look forward to participating!

[Author]

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