[angeParticipant]

Hi, I am 51 years old and was diagnosed with asymptomatic myeloma this week after abnormal blood tests for an unrelated GP visit. My paraprotein level is 37.1 and my bone marrrow biopsy showed 12% plasma cells, skeletal survey was fine. I will be having 4 weekly blood tests and clinic appts and was told that I will be started on chemotherapy when my paraprotien level reaches 50 – 60. I have read so much about myeloma in the last few weeks but feel very anxious about the unknown.

[EvaParticipant]

Dear Ange,
I was diagnosed with mm four years ago and I've had a number of treatments. I'd be happy to share my experiences with you, but I don't know what the focus of your interest is. If you'd like to chat with me, you could drop me a line to my email address and I could call you – I have free calls. My email is evayouren@lineone.net

I know this must be a difficult time for you. I've had a good four years and have done and experienced many wonderful things – though there is no doubt that a diagnosis of myeloma is life changing event. By the way, I was the same age as you when I first found out I had to be treated for this illness.
Best,
Eva

[tomParticipant]

Hi Andrea

Sorry you had to join our merry band of MM'ers.
Its a scarey world at the moment for you am sure but it will all fall into place as the time/treatment kicks in 😀 any thing you need to know just ask if you want to have a rant and or rave please feel free as it will all help to have the bottle top off and let it flow out.

Where are you getting your treatment as some on here might be in the same Hospital and will give you more advice on that.

Good Luck on your road to Remission.

Love
Tom "Onwards and Upwards" xxxx

[angeParticipant]

Hi Eva

Thank you for your kind message. It is helpful to know that I can contact you and great to hear how well you are doing.

With best wishes
Ange

[KevinLParticipant]

Hi Andrea

Sorry to hear your news. I too was diagnosed about the same time as you and have started the cycles of initial treatment. I am 48. As you say the whole thing is such a shock and does make you very anxious about the treatment and the future.

You will read on this forum lots of stories about people who have been through the treatment and living great lives and I find this very reassuring and tend to think of the treatment as my first step towards getting better.

I guess we'll get over the shock of the news and start to rationalise our thoughts – it may take some time though.

Keep positive and keep us posted how it's going.

Kevin
Sussex

[angeParticipant]

Hi Tom

Thank you for your kind message, I am from Newport, South Wales and go to RGH so would be interested if anyone else is from this area.

Best wishes
Andrea

[angeParticipant]

Hi Kevin

Sorry to hear you were diagnosed too. Good luck with your treatment. For me it is a waiting game until I need treatment and I have no idea how long that will be! On the positive side I have some time to prepare and am thankful I was diagnosed so quickly.

All the best
Andrea

[jmsmythParticipant]

Hi Andrea
Sorry you had to join us but you are in the best place. My husband was diaganosed 6 years ago with smouldering myeloma, he was being checked for something else. He just started CDT in June and has 3 more cycles to go before STC. Andrea I know its difficult not to worry (I'm the best at that) but we had a great 6 years, doing things that we wanted, and hope that after treatment we will be able to continue. My very best to you
Love Jean

[angeParticipant]

Hi Jean

Thank you for your message, I can see that everyone here is so kind and helpful which is very reassuring. Wishing you and your husband all the best.

Love
Andrea

[ozzyParticipant]

Hiya Andrea
I live in South Wales but attend Royal Glam I think you must be attending the Royal Gwent.I started my journey in Jan 2010 and my pp was 22.In May it had risen to 44 and I started 6 courses of CDT. I had the SCT in Jan 2011 at the Univ Hospital Heath and have been in remission since then. My pp level remains at 4 and has been that level since the transplant.Your journey is individual and no journeys are identical.I know it all seems a frightening prospect now of whats ahead but you will get all sorts of good advice on this site and ask anything that is worrying you as someone will have been through the same problem. All the best on your journey and if I can help please do ask.
Best wishes Ozzy

[angeParticipant]

Hi Ozzy

Nice to hear from someone in South Wales! Yes, I go to the Royal Gwent Hospital. Glad to hear you are doing so well! Thank you for your kind message.

Best wishes

Andrea

[PeterJamesParticipant]

Hi Ozzy
I was diagnosed in June this year , my PP was 46
After the first two cycles it has dropped to 10 which I think / hope is pretty good with four more cycles of CDT to finish
Then an SCT at Christies in Jan
What I cannot seem to find out is what is classed as a good result , you are at 4 , I have read posts of 1 or zero
Zero is oviousley the the best
I have signed up to the Manchester Myeloma open day on 22 nd Sept . Hopefully to discuss this point & where research is leading to some pont in , for us , the near future for the magic bullet ,which will be the final cure drug , one has to be optimistic
All the best
Peter

[mhnevillParticipant]

Hi Ange

Like everyone else I am sorry you have had to join us. It is very confusing that MM is such an individual disease and it is sometimes particularly confusing if you have high para protein levels but still don't need treatment yet. This will be because you haven't any organ or bone damage. I do hope this situation lasts for a long while.

All very best wishes.

Mavis

[teds31Participant]

Hi Ange,I'm a lot older than you but I was diagnosed with Smoldering (Asymtamatic) MM about 5 years ago, I have't had any treatment and I go to the clinic every 3 months. My PP level at the moment is about 12/13, I know its hard to come to terms with as every time you go to clinic it could be bad news,but you have to look on the bright side and get as much out of life as you can. I try not to dwell on it and get on with things. I go to clinic tomorrow ,wish me luck. Ted.
There is a very good info leaflet at this site if you haven't already seen it.
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[angeParticipant]

Hi Mavis

Thank you for your message, it is a strange thing to get my head around but yes, hopefully I won't need treatment too soon.

Best wishes

Andrea

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