[nerParticipant]

Hi Liz
thank you so much for your post. It sounds like you too have had a heck of a journey with myeloma. I have to say that your strength and positivity and obvious love for life gives me and im sure alot of people on here a lot of hope! Its fantastic that your in remission and able to enjoy life to the fullest despite the disabilities myeloma has left you with. I pass on all your messages to my mum and these give her hope too and some understanding of whats to come next. I do find she tends to ask me a lot of questions when what the consultant has said hasnt quite sunk in. Its hard sometimes to answer difficult questions (usually abut life expectancy) but we are trying not to focus on that and to focus more on getting to remission and then enjoying life drug free for as long as poss.
We have been told now that she will have another two cycles of chemo (velcade) and then possibly she will be ready for the sct. I do hope that is succesful.
Lovely to hear from you liz. Take care and keep enjoying life to the max! your amazing.
Love Nerys xxxx

[nerParticipant]

Hi Tom,
Nothing selfish about that!! Why shouldnt you want as much remission as possible! I hope you get it you deserve it!!:-D . Ive read loads of your posts on here and you seem to be a huge help to everyone.

Love nerys xxx

[feaseyjaneParticipant]

Hi Nerys

Just thought I would drop you a line to see how you all are.
Any news on mum,s SCT and how is she feeling at the moment

Sending hugs to you both

Keep well and warm

Love jane xxxxxxxxx

[nerParticipant]

Hi Jane,

Hope your well. I read on your post that your to start your treatment next week.I do hope it goes well for you and that your paraproteins come down. We're all ok at the moment thank you, things have been pretty steady for a while really. Mum was told on friday that she will have another 2 cycles of this treatment which takes us to the beginning of may. By then i think the hope is that the paraproteins will have come down low enough for the SCT.As mum is on the myeloma x1 trial they need the levels to come down as low as they can before doing the SCT as i have read on here of people having the SCT with higher levels than the 2.7 mum was at.(last time it was checked)
Do you know what your treatment plan is? is an SCT on the cards or is it a bit early to say?

Thanks for e-mailing. Look forward to hearing from you again.

Take care and good luck if we've not spoken before next week.

Lots of love and hugs

Nerys xxx

[VickiParticipant]

Hi ner

Just wanted to send you and your mum some words of encouragement. Your mums pps are very low….which is a great preparation ready for sct. There is no hiding the fact that it is a tough road, but so worth it and she will then go from strength to strength!

Take care and enjoy your Easter

Vicki and Colin x

[bandityogaParticipant]

Hi Nerys

My husband was daignosed with mm in late October. He had been suffering with backache since April and was sent to a specialist in June who sent him for physio. We had to go private for an mri scan and that was when a tumour on his spine was detected and mm was diagnosed. Like your mum, my husband's legs started to wobble and he had to have a spinal operation and has been bedridden in hospital and partly parylised. Ian is now just finishing cycle 3 of CTD and at the start his light chains were 7000 and now down to 147, his paraproteins are 5.

It has been a nightmare for both of us and we hope that with good physio he will be mobile again soon.

Love to your mum

Maureen x

[eveParticipant]

Hi Maureen

I never realised you had difficulty getting diagnosed,what did you doctor say about it???

How are things going,are you managing to get any rest.Love Eve

[sanParticipant]

Hello, i too have a dear Mum with MM diagnosed 3 weeks ago, she is still in hospital and pain control is the challenge at the moment, as a family we are all shocked to see her going through this, she is 76 and has probably had it since last september as the shoulder pain started then but again the Gp thought that it was muscular, and when she had low back pain he thought that it was a slipped disk, so months on she has bone damage which is so painful and the fatigue is huge for her, she is on the Myeloma XL trial and we so hope that she will improve soon and can go home with our support, as with others we are all reeling with the diagnosis but with a community like this it helps and i know that we have to keep strong for her so thank you, San.

[bandityogaParticipant]

Hi Eve

Ian first went to the doctor in April last year with backache and in his records he said to the gp that he thought it was something sinister. The gp is quoted as trying to assure him it wasn't. Went back several times and was given pain killers each time. By June it wasn't getting any better and he asked to be referred to a specialist. Saw a dcotor in Forth Valley hospital in June who advised that he was a bit stiff and he should go for physio. Went 13 weeks for physio and was getting worse. He asked to be referred privately and the doctor he saw sent him for an mri scan the following week. The mri scan showed a mass on his back and he was kept in hospital. It was such a shock as we were due to go on holiday the next day. 2 days later Ian was diagnosed with mm. The steroids started attacking the tumour on his back but his spine started to crumble and his legs started to wobble. He was rushed to Edinburgh for a spinal operation and we thought he wouldn't survive. The surgeon in Edinburgh said I should make a complaint about the specialist he saw. I have typed my letter but the surgeon wanted to see it before I sent it so I am still waiting for him to get back to me.

Ian managed to go in a wheelchair today and wheel himself along the corridor. It is such an achievement for him but he has a temperature of 38.4 and raised crp so he might have to be given antibiotics iv. He has mrsa in his bed wound. We always seem to go one step forward and 2 back. Won't get much sleep tonight worrying about him. I pray he will be ok.

How is Slim?

Maureen x

[eveParticipant]

Hi Maureen

I am not surprised by your story,as Slim and a few others have gone through a similar path,I actually sent a letter to my original doctor asking for an explanation ,thinking he might just have the guts to admit,the mistakes he made,but it was a waste of time.I phoned for a referral ,you need them private or not,another doctor phoned me and asked me to bring Slim in straight away.She examined him and straight away said there is a disease were calcium leaves the bones,then are story began.So you are not alone,the myeloma forum have a campaign going you can send for information pack to give to your doctor.
The problem seems specialist are only special in the field of medican,they qualified in. The sad thing is a simple blood or urine test would have started alarm bells ringing,and that should be done as standard bloods and urine at GP.

Ian would possible not be in the position he is today,no one expects miracles,but you expect doctors to listen and take onboard the condition,when it gets to Ian's stage the pain level must have been awful,a simple cheap ex ray would have shown the growth.
I hope things improve for both of you soon.Love Eve

[feaseyjaneParticipant]

Hi Nerys

Just catching up with my messages

So how is you mum and how are you

Thanks for your lovely reply

Just started chemo CTD so it's early days for me
My Consultant did talk about SCT but that is a way off yet.

Keep in touch and let me know how things are

Jane xxxx

[RuddParticipant]

Hello your mums journey sound do similar to my mums
She was diagnosed finally in October 2011 after
Six months of severe back pain. Again was told
That it was posture etc etc, but had X-ray and
Nothing showed had blood tests and still no
Diagnosis. Eventually mum lost the use of her legs and
Was rushed to A&E where we received the bombshell
Myeloma! She had surgery to rebuild her back
And radio then chemo. Mum had her sct in October
2012 which was very traumatic. Besides being
Very poorly from high dose chemo, she fell over
In hospital and broke her wrist. So another op.
I don't think that anyone can tell you how difficult
It is to rebuild after sct. It has taken until now for her to be
Able to walk properly although she has limited
Time that she can walk for. But she has done
Amazingly well. I couldn't believe how your
Experience resembled mine. It has completely
Changed life. Also the way you look at things now.
Mums levels had to be v low before transplant.
Prior to sct she had injections to promote growth
Before they harvest. It was a fantastic experience
Watching the harvest. But the road is long and you need
To be able to talk to people. It's such a difficult
Thing to have to come to terms with. Now mum
Has a bad cold and has been told by GP that
Her red blood cells are larger than they should
Be so More tests ! I really would love to know
If anyone had experienced this? I could talk all
Day do I am sorry to ramble. If I can help you
With any thing I will. I hope your mum is okay
I would like to know how she gets on. Keep posting
Stay strong and there are so many lovely people
To talk to best wishes to you and your family.

[nerParticipant]

Hi all, soo sorry its been a while since I posted on here. Dont know why really, I guess its been a bumpy few months and just with everything hapoening I just didnt. Anyway! I hope my post finds you all well. I have had a read of a few of your messages. Rudd, you sound like youve had a rollercoaster few years with your mum, I hope things are ok and cross everything for you that you get good results from these lots of tests. Let us know if you can.
Well where are we at now! I now understand a little more than I did and realise that I posted incorrect numbers on here. My mums paraprotein levels actually started at 49 and after nearly 10 months of treatment they are down to near enough untraceable in blood tests which is amazing! So next step SCT! We've obviously had a lot of info now about the procedure and we are all feeling very anxious, it gives me some hope that so many of you had ansct and are enjoying good remission. The sct.is due to start in.july so we'll see how that goes hopefully it will get tge results everyone is praying for.
It would be lovely to hear from you all. I wish you all the best whichever part of this strange journey your on. Lots of love
Ner xxxxx

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