[MicheleParticipant]

Hi Tom
I had CTD for 6 months and am now 15 months post SCT.
I still get the odd bone twinge in different parts every now and again and have been assured that it's due to damage done prior to my diagnosis.
My PP's have remained steady at below 1 since SCT so I have no reason to disbelieve what the specialist says.

Hope this reassures you a bit!

Michele

[MicheleParticipant]

If the CTD mad such an impression on the MM after just one cycle, I too would stick to it.
Getting the virus was just very unfortunate, but shouldn't cause a drastic change of treatment plan.

It took 6 cycles to get me into remission. It was pretty gruelling but well worth it. The drugs did their job and the side effects all turned out to be temporary.

Very best wishes.

Michele

[MicheleParticipant]

Hi Terry

Only you know your own personal financial circumstances and whether you enjoy the job you're currently doing or not.

All I can say is that if I could afford to give up a job I didn't enjoy, I would.
The impression you give is that you don't enjoy the work you do and you'd rather be using your time up restoring your cars. Maybe you've answered your own question.

None of us with MM know how much time we've got left, but I'm mentally aiming for at least 10 years and am planning accordingly.
I've given up all work now and am enjoyng every minute of freedom to do as I please. Not selfish, just practical and life's good.

Have a good think and don't be frightened to make any major decisions.

[MicheleParticipant]

Hi Terry

As long as you don't have an extraction, I was told that there's no problem with just a filling, but you must tell your dentist of any drugs you're on, particularly biphosphonates. (eg Zometa).

I'm sure the most painful bit for you will be the cost!

I hope you get it sorted quickly and easily.

Michele.

[MicheleParticipant]

Hi Debs

Just a thought, but could your cheeks be anything to do with your hormones?
I sometimes get a hot face and I presume it's just a natural thing.
Chemo. leap-frogged me past any sort of menopause, but I suppose our bodies still have a few side-effects to spring on us every now and again.

Hope this helps. 🙂

[MicheleParticipant]

Hello Dai

It's strange that you should post this thread today.
Just recently I've been pondering on the fact that as wonderful as this forum is, the actual MM PATIENTS tend to have their comments and messages lost amongst those posted by carers/family members who naturally only post thoughts from their points of view and at the end of the day cannot step into our shoes and experience what's going on in our brains.

Having a thread where only the actual folk with MM could post and exchange thoughts would be of great benefit I think.

I hope my saying this doesn't upset anybody. Hopefully it will have a positive effect.
🙂

[MicheleParticipant]

Well I for one don't blame you Dai. I'd have done the same, especially on such a rare sunny day. Infact I think I'd have gone at the 1.5 hour mark…

I always think it's ironic, but life's literally too short for us with MM to waste time in any sort of waiting room!

🙂

[MicheleParticipant]

I know that feeling Tom! It's great news and will hopefully be repeated many many times.

Felt like the first day of Spring today. First blob of frogspawn in the pond. Spent the afternoon out in the sunshine. It really did me more good than any pill!
A bit different to last year when I was in the middle of SCT…..

Michele x

[MicheleParticipant]

Before I was diagnosed with MM it was rare for me to even take a paracetamol let alone anything else. I had and still have the idea in my head that if the body can fight something off on its own, let it do it!

However, I'm not stupid and knew that I had no choice but to take all drugs prescribed to me when I was on CTD and during the SCT.

When I was discharged from hospital I was given a long list of drugs to take ranging from 6 months to a year post SCT.
At first I took them all but after a couple of months I began to question why and came to the conclusion that some were indeed "just in case" drugs rather than "definitely need" ones.

Rightly or wrongly I stopped taking those that I didn't think were essential (bearing in mind I made a very fast recovery) and stopped all at the 6 month stage.

It's not something I'd recommend to all but I knew it was the right thing to do for me.

Unlike when I was first diagnosed and blindly obeyed every instruction, I've got a mind of my own now and do question anything I'm not happy about. I feel far more in control of my own quality of life.

Dai, I would definitely query your cocktail of drugs. It does sound a bit OTP, but on the other hand it may be exactly what you need.
Go on……show them you've got a mind of your own too!!! 😀

[MicheleParticipant]

Hi Janet

It's so good to hear about how well you're doing. 6 years on and still doing well is excellent news.

My stem cells are having their 1st Birthday Party on Sunday (10th) and I'm living a totally normal life again at the moment.

MM is one of those weird diseases that has no set pattern for any two people, and this forum seems to back that theory up with a cross section ranging from doing very well to hitting every problem going.

It's so important to all support each other whatever hand we've been dealt. Positive news is a boost for us all!
Take Care
Michele x

[MicheleParticipant]

Thanks for doing that Stuart.
Is there any way a more secure firewall of some sort could be put in place to stop these scumbags registering?

[MicheleParticipant]

Hi Grayham and welcome to the site.
We don't mind having an Aussie join us.:-D
I'm really glad you found Myeloma UK. It's a brilliant site and it definitely helps you to understand what's going on in the MM world.

I was diagnosed in May 2011, had 6 months of CTD and then a SCT in February 2012. I recovered very well and am now living life to the full, drug free. Fortunately the MM was caught very early on, so not too much damage.
It was 2 weeks after we got back from WA that I started having arthritic-type pains in my joints that made me go to the doctors. I'd been bitten a lot by mozzies in Mandurah and really thought I'd picked up Ross River Virus.
Anyway, thanks to bloodtests, MM was found to be the cause and so my new way of life began.

Whereabouts in Perth are you Grayham? We have friends in Sorrento and always stay with friends who own a vineyard in the Swan Valley when we come over. (Edgecombe's). We love borrowing your Summers when it's below zero here! Hope to get back out there at the end of the year.

Take Care for now and stay positive and optimistic. Are you being treated in Perth General?

Speak again soon.
Michele

[MicheleParticipant]

Hi Lesley

Yes, it's a terrible shock to be diagnosed with MM and frightening too. I hadn't got a clue about and had never heard of it before May 2011.
It felt as though my future life had concertinered and I honestly thought I only had a couple of weeks to live. I was only 49 at the time too.

Let me assure you that this is NOT the case.

As with any disease, knowledge is power, so I'd strongly advise you to use this site to learn as much as you can about MM. Don't do wild-card searches on the internet. It's mostly full of out of date information and will only scare you.

MM is very treatable and you do still have a future.

Can you tell us a bit about yourself. How were you diagnosed, where are you going to be treated, how old are you?

There are plenty of us on this forum who'll be able to help and support you along the way.

Speak again soon.
Michele x 🙂

[MicheleParticipant]

Hi David

I had a really enjoyable Christmas and am looking forward to an active New Year. That started today when along with my husband (also a David) I started ripping wallpaper off in the hall. New year, new decor! 😎

I had a bit of cramp at night a few months ago and was told by my nurse to drink some tonic water in the morning (for quinine) and as I didn't consume much salt, add a touch more salt to my diet. I did that by eating the odd packet of crisps! (plus a glass of lager to balance things up).
It did the trick though, so may be worth a go.
🙂

[MicheleParticipant]

Fortunately I didn't have any itchy rashes post SCT but did when I was on CDT and that was caused by a drug I was taking at the time.

Was your husband given a new drug to take just before he was discharged? It could be an allergic reaction.

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