[missray2012Participant]

Hi Emma,

I'm 27 and my Mum is 64.

about 2 years ago my mum had problems with her ribs and was told that she had simply pulled a muscle whilst digging.

After numerous trips to the Doctor and several types of pain killers later, she demanded a chest x ray .

Thats when we got the phone call from the doctors surgery for us all to come down as the x ray and blood tests showed things to be a little out of ordinary.

It took from Oct 11 – January 12 to diagnose it as Myeloma.

Like you I googled it and i've learnt to only look at this site & the NHS one – the others scare the living daylights out of you!!

My mum had 4 cycles of tablets , followed by a stem cell transplant in August.

Today she was told she is doing brilliantly and is back at work!!

Its safe to say the journey is full of ups and downs but you literally have to take it one day at a time.

I went to a myeloma info day back in April and the prof told us that he has two patients that have had their transplants and not relapsed for 20 years.

The man sitting next to me had been diagnosed 13 years ago, and the woman in front 15 years ago! You will find that lots of people with Myeloma have been diagnosed quite a few years ago 🙂

Hope this helps and private message me if you ever need to talk.

p.s sorry for spelling – typing very quickly whilst on my lunch at work!

Rachel

[missray2012Participant]

Hi Kerrie,

I cant seem to private message you. Drop me a message with your email.

Rach xxx

[missray2012Participant]

Hi Kerrie,

All of my friends parents are in their late 40's/early 50's whilst my mum is 64, coming up to 65 so its really hard to find someone who understands!!

Where is your mum being treated? We are at nottingham city hospital.

During my mums 4 cycles of CDT she did have a couple of side effects. She had a rash and the steroids seemed to make her very very ratty!She also got a lot of cramp in her hands for some reason! Emotionally it was really tough. Part way through she became very low and said she didnt want to take any more tablets – she had had enough.

With help from my Dad and I , we managed to encourage her to keep on going.

She is now about 2 weeks, maybe 3 post Stem Cell transplant and is doing well.

I know what you mean about your world crashing down. When I found out I just spent days & days crying my eyes out. Even now, when she was having her stem cell trasnplant I would find myself thinking – is this actually happening to us??? I still cant quite believe it. its so unfair.

I really hope your mum gets on well with the Velcade. I know how it can be a really stressfull and worrying time for you all. I spent the whole time hoping and praying there were no hiccups and I was always really anxious about what was going to happen next.

I know everyone says it to you , and I got fed up of hearing it but I think you need to be as positive and as upbeat as you can. I keep telling myself to be grateful that there are all of these amazing drugs/treatments around and that there are lots of different options should one thing not work as well as expected.

I can give you my email if you like if you ever want to chat?

Rachel xxx

[missray2012Participant]

Hi Mavis,

You are right! We spent the whole of last Christmas thinking it was bone cancer and that there were tumours elsewhere.

Once we had the diagnosis of Myeloma (be it not great) we were relieved to see that it wasn?t immediate death.

The doctors were shocked that she had Myeloma as they said it was quite rare for someone to have a tumour based cancer to go on and have a blood/bone cancer (what rubbish luck!!). Did anyone say anything similar to you?

Best wishes

Rachel

[missray2012Participant]

Hi Sandra,

Thank you so much for your message.

I guess you are right – the cancer doesnt care who it effects.

I hope you, your husband and family are well.

I'm finding the forum really useful with regards to support/answers 🙂

Rachel x

[missray2012Participant]

Hi Tom ,

Thank you for your kind message.

Thinking about it – the SCT was 3 weeks ago as she has been home a week already. Within days of being home she was doing the washing and ironing and pottering around in the garden (very naughty!) and we cant seem to stop her!

She hurt her rib a couple of years ago digging in the garden and after repeated visits to the docs and 18 months later, she demanded a chest x ray. That came back with some dodgy looking areas on the ribs and a broken one! That was when the nightmare began . After further scans and some areas found on her pelvis there was talk of bone cancer. She had cancer of the lining of the womb 8 years ago and at first they thought it may of spread. We spent all of last Christmas not knowing what it was – it was awful!!

Finally in January she was diagnosed and to be honest I still struggle to believe its actually happening to us. I'm an only one so I don't really have any bothers or sisters to talk to.

She is doing well at the moment but i'm scared about the future – but seeing that you are still in remission is fantastic!!

How long did it take for you to feel 100% after your SCT?

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