[susieParticipant]

Hallo
I've just joined your very interesting site, and my tale is as follows.
8 weeks ago I went to my GP coz my arthritis was causing me problems. The results of the bloods she took led me down a very unknown road. Mind you, it did take the surgery weeks to call me in, just for Dr to tell me she was refering me to a haematolagist. Imagine my response when I arrived to find myself in a cancer unit 2 days later. I nearly had a fit.
I was greated by the most charming and confidence giving consultant and I learnt about myeloma. Apparently my bloods had shown a paraprotein level of 30. I don't know what the normal count is and I was too shocked to ask. I had more bloods taken and a full skeletal x-ray the same day, then today I had a bone marrow done. I've got to see consultant in 2 weeks for final results.
Can anyone tell me what the normal paraprotein level is ?
There was no anaemia or calcium so I'm hoping its not the worst.
Thanks for listening.

[kaychappersParticipant]

Hi suzie sorry u have to join the happy bunch here but that is what they are and very supportive. I went to my doctor with tiredness and was sent to a haematologist soon after as my para proteins were 37. But I had no calcium or anaemia. My bone marrow was 13% I was told anything above 10% without other symptoms was called asymptomatic or smouldering myeloma. No treatment was required. I was monitored with monthly blood tests. 18 months later I started becoming anaemic and they intervened with treatment. It's great they have caught it early for you. You will find lots of help here as myeloma is such an individual journey. After treatment my pp is still 18. Others go down as low as 1 or 2 but my consultant is not worried as I am no longer anaemic. Let us know how you get on. Best wishes. Kay x

[HelenParticipant]

Hi Susie
Welcome
A very worrying time for you but Kay seems to have covered it well. I have a different, low secretory myeloma so my pp was only 5 at its highest, though the anaemia I had meant immediate treatment. Each of us has their own 'level' and the pp is only one of the measurements used, when all the tests are done then they will decide what happens next. Where are you being treated?
Helen

[andygParticipant]

Hiya Susie
Sorry to have to welcome you to the war on myeloma. You will find loads of support and advice from the happy band that makes up this forum. I was diagnosed October 2011 after 18 months of back trouble when my paraproteins were 50. I'm down to the mid 30's now but it is proving difficult to get them lower. My consultant wants me below 10 before a sct but others have had sct at higher levels. Everything is different for everyone as you will be told numerous time myeloma is a very individual disease with lots of variables – fitness , tolerance to the drugs even, as in my case, the stubbornness of the paraproteins the list is long. Your treatment will be tailored to you and hopefully it'll be plain sailing. Don't be afraid to come on here and ask any questions you can even moan and shout if you want to – you will find a receptive ear or 2 or 3 – many ears and they'll offer advice but more importantly everyone will be supportive I can guarantee it.

Keep positive and keep fighting
All the best
Andy xx

[HelenParticipant]

How are you now Andy ? Can't sleep I guess!!
Helen

[andygParticipant]

Hi Helen
I feel fine thanks. If it wasn't for my back I wouldn't know I was ill!
I started my first REV – DEX cycle yesterday so I'm on DEX time. Feel tired during the day and wide awake at night lol. What's you excuse being awake so late?

Andy xx

[eveParticipant]

Hi Susie
Welcome to the site,by the sounds of it,you are going to find more information from here,than your own doctor told you,did you doctor mention the word Myeloma??????
If you went to the hospital,without any knowledge,it must have felt like a boxers punch knock out!!!!!,its a wonder you managed to take any thing in.

Susie there is a future,yes you have Myeloma and at times you are going to feel so low,but as the experts will tell you it is treatable but not curable.
So take things slowly,learn as much as you can,and listen to your body,if your tired rest,its a long journey.Everyone on here is on the same journey even there partners. Eve

[tomParticipant]

Hi Susie

A Warm welcome to this great site, hey am the (one of them) man for the giggles if you need them as for the para thingie bob I aint a clue :-/ if My Doc is smiling then am happy 😎 so al leave all the techie stuff to the others.

Take it one day at a time and as has been said dont do too much rest when your body tells you, and it will am afraid :-/.

Which Hospital will you be treated at as we might have some MM'ers that use the same hospital 😀

Love
Tom "Onwardsw and Upwards" xxxx

[susieParticipant]

Hi All
I just wanted to thank you for all your replies.
I had the bone marrow done yesterday and had no problems till I got in car today. The seat seemed to hit the spot and its been really painful since. I have taken some paracetamol, it has taken the edge off. Hope it wont last too long. It feels like i've been kicked in the bum by a rather large horse.!
Keep up the good work
Susie

[teds31Participant]

Hi Susie, I'm sorry you have had to join us but its a great site for info on MM. Mine was found when I had a blood test for a chest problem ,when the doc asked for a second test I saw the form said Bench-jones, I looked it up on Google WOW what a shock, but that was more than 5years ago and I have asymtomatic or smoldering MM. so I dont have treatment, I'm very lucky. I still go to hospital every 3 months and it is a bit nerve racking but compared to most people on here is a breeze. So look around the site there are lots of bits and pieces of info that helps. All the best .Ted

[HelenParticipant]

Hi Andy
Always been a night bird, descended from a long line of owls I think, and never used to need more than 6 hours sleep. Now I need about10! Dex time is weird, I could never switch my brain off, so even when I think I was asleep I felt awake, – dreaming was vivid reruns of the day and little plans for the next.

Hi Susie
A few days pain is normal, agree about the horse
Love Helen

[susieParticipant]

Hi All
Hope you don't mind my rantings but I've only got a few more days till I get my actual diagnosis and I've got the real wobbles. In fact to be honest I'm s**t scared. I'm just hoping with all my strength that it will be MGUS or smoldering. Sorry to be such a wimp but I can't help it. The thought of my life being taken over by drugs and never ending hospital appointments fills me with total dread.
Keep your fingers crossed
Luv
Susie

[HelenParticipant]

Hello Susie
It's a terribly difficult time and I do sympathise, I remember it clearly, it was Christmas 2010 for me. You hardly dare think about it, but it wakes you up at 4 in the morning as you wonder what the result is going to be. Be brave, whateve happens you will cope with it. In the mean time do nice things and enjoy the weekend as much as possible. What day do you find out? And do you have someone close to take with you? To take notes and listen with you or even record the appointment. I'll keep my fingers crossed that you are still a way off treatment. Keep in touch.:-)

Hi Ted
Good to see you again and glad to hear there is no need for you to start any treatment, what a relief for you 🙂

Love Helen

[susieParticipant]

Thank you Helen.You described the feelings to a tee. I'm feeling a bit calmer today, it seems to catch me when I'm not expecting it. Keep saying to myself what will be will be. I get my results on Tuesday and my sister is coming with me. She had breast cancer 12 yrs ago so she knows the ropes with this sort of thing.
Thanks again, I'll post results as soon as I can.
Luv
Susie

[mhnevillParticipant]

Hi Susie

So sorry you have had to join our "merry" band! We all know what it is to be waiting for results and dreading the outcome. I do hope that you have some time without having to procede to chemo. I was very fortunate and had 17 months between my operation to remove a tumour and progression. Thing was though, it did come as a shock when I did have to start t three weeks ago.

The thing I have discovered about this disease is, you seem to get the strength to go the next bit of the journey and probably isn't good to try and look too far ahead. Folk on this site are a great bunch to help with that.

We will all be holding our breathe for you on Tuesday. It is good that you are taking your sister along. I find it helps to write down the questions I want to ask the consultant. You may find getting a Myeloma UK Treatment Diary helpful. Free via the phone line. I find it helpful to keep a record of my blood results.

All very best wishes.

Mavis

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