[MicheleParticipant]

Yes, I know what you mean about the mix-up with Myeloma and Melanoma.
If I do tell people what I have I always say Myeloma first, then when I get the blank look I usually say "bone marrow cancer". The trouble is I then get the shocked look swiftly followed by one of pity. (I hate that!)

😐

[MicheleParticipant]

Hello Tina

Good idea having a little break. Whereabouts in Dorset are you going? I'm just outside Poole.

Have a lovely relaxing time.

michele x

[MicheleParticipant]

So sorry to hear that David. What a bummer. 🙁

Look after yourself and try to keep chirpy.

Michele x

[MicheleParticipant]

Hello and welcome.

I was diagnosed in May 2011 when I was 49 and like your husbands, my MM was picked up via a bloodtest for what I thought was a disease I'd caught on holiday in Australia where I was bitten by loads of mozzies.

I had 6 cycles of CTD. It wasn't an easy time but I can assure you that it was all worthwhile because the drugs did their job.
I kept a diary during the cycles and it proved to be very useful and soon showed a pattern meaning that I could predict when my rubbishier days would be. The steroids made me feel very tired and as though my limbs were made of lead. Some days I had to drag myself up the stairs.

The good news is that virtually all the unpleasant side-effects are temporary and it is worth "toughing it out."

I really wish you well. My husband was a model carer. He did lots of research about MM and made sure I ate well, kept active and most importantly…kept me smiling! 🙂

[MicheleParticipant]

John, I was interested to see your comment about "the vested interests of the giant pharmaceutical companies."

I've often thought that secretly they don't really want cures found for myeloma or any other diseases. Why would they? They're doing very nicely thankyou supplying all our "treatment" drugs………….

[MicheleParticipant]

Hello Pete

It's a shame that you've had to suspend your group but I think everyone with Myeloma copes in their own way and not everyone needs or wants to use support groups.

Keep in touch on this forum though!
🙂

[MicheleParticipant]

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.

🙂

[MicheleParticipant]

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 (thankfully!) I know they're there if I need them.

When you're doing your research on the internet, bear in mind that there's a lot of rubbish about MM out there as well as out of date information. This Myeloma UK site is the best and I also keep an eye on The Myeloma Beacon which is a US site that is very up to date with current treatments as well as those in the pipeline.

Speak again soon no doubt. Take Care.
Michele

[MicheleParticipant]

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 about what your body has just been through being bombarded with toxic mixes of drugs etc. no wonder it wants to shut down more often to get over it all!

Take it easy but at the same time try and have a little walk regularly to stay active and keep you muscles toned.
If you're in good shape just before your SCT it will make a difference to your recovery overall.

🙂

[MicheleParticipant]

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 it was told not to travel abroad long haul for at least a year.
I think the main concern was germ/infection related, afterall an aeroplane is a sealed germ container when you think about it and full of people with coughs and colds usually! Fatigue is also a reason to holiday close to home during recovery. Insurance could be tricky too.
I know that despite feeling much better already,I'd never be able to travel long distances yet, but I'll be packing my case again in the New Year!

Michele x

[MicheleParticipant]

Hi Charlie

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

[MicheleParticipant]

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.

[MicheleParticipant]

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 thought it would benefit side-effects.

I'm sure your doctor/nurse/specialist wouldn't mind a quick phone-call to tell them what's happened and ask about a time change.

[MicheleParticipant]

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

[MicheleParticipant]

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 soon as I came off of it I had trouble getting to sleep at night. It was really noticable. I also had a lot of "restless leg syndrome" which drove me a bit mad!

That said, there's no doubt that if it's possible, do try and build yourself up for STC. I kept active and watched what I ate and it definitely put me in a good position to tackle the STC.

Colin, let Vicki carry the shopping bags for now. Don't be embarrassed about feeling a bit weak at this stage. She'll soon have you doing loads of jobs again when you've bounced back! 😉

Take Care
Michele xx

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