[angeParticipant]

Hi David and Tom

Thanks for the kind words of encouragement. My first day has gone well and everyone in work has been very supportive as are my family and friends. I only work Weds Thurs and Fri so will be able to pace myself. Andrea xx

[angeParticipant]

Hi Wendy

Hi Wendy

I was diagnosed with smouldering myeloma in August 2012 so know exactly how you are feeling. After reading about it, talking to the nurses on this site, joining our local support group and attending information days I gradually accepted the diagnosis and just got on with life. This took some time and it was hard talking to family and friends and work etc. I requested the myeloma matters publication and a patient diary etc from this site. I then attended each clinic appointment and made the most of the time treatment free with my family. Everyone is different and some people smoulder for many years. I was told that I was high risk and would progress within 2 years. It has been 20 months but now my paraprotein is rising very high and there is talk of treatment. I have another bone marrow biopsy on Monday to decide.

I think the best advice is to look after yourself, drink plenty of water and keep using this site, not the scary sites that are outdated! Hope that helps a bit Andrea xx

[angeParticipant]

I was also diagnosed with asymptomatic or smouldering myeloma last August by chance. It was a huge shock but I am still asymptomatic and have now come to terms with it by finding out as much as I could on this site and from other people here. No two patients are the same and this is dependent on many different factors but being younger at diagnosis does feel strange and also the fact that not many people have heard of it. I am monitored very closely and the only problem I have had is fatigue and anaemia which was iron deficiency and treated. I am thankful for being diagnosed early and just attend my clinic appointments and try to make the most of the time now before treatment starts. My youngest daughter is 14 and I work part time so very busy too! Hopefully you will stay asymptomatic for a long time. All the best Andrea xx

[angeParticipant]

Hi, I was diagnosed with smouldering myeloma in August last year. I feel ready and prepared for treatment but this will not happen until the myeloma progresses. I have read up as much as I can and just keep attending my clinic appointments. I feel overwhelming tired and need to sleep in the day to get through to the evening. I work part time and have a busy family life. I have had x-rays and an mri which show multiple disc bulges but nothing myeloma related. My paraprotein levels are stable around 39. As you will find out no two patients are the same. It is a strange situation to be in as I feel I am just waiting for the second hit and have no idea when that will be – I was told initially that I would progress within 2-3 years so I have made a year! I hope you will have a long time smouldering. Take care Andrea x

[angeParticipant]

Hi Sue, I also have 4 children and was diagnosed with asymptomatic myeloma last August. I have smouldered for a year now and my paraprotein is quite steady at around 40 but I do not need treatment yet. I was completely open and honest with my children right from the start and after the initial shock they seem to be handling it very well. I talked to the parents of my youngest daughters' friends so that they were aware of the situation. That has given me peace of mind that she has their support. My oldest son attended the Information Day in Cardiff with me last year and my eldest daughter will come to the next one with me. Like Ted says every patient is different but this is the best place to get support and advice. The first thing I did was to request the information booklets and also a patient diary. I take the diary to each appointment and make a note of all my test results etc. I have made the most of this year and try to be as positive as possible, my daughter has been lucky enough to go to quite a few concerts etc and I intend to keep things as happy and normal as long as I can. Financially I will be stuck if I can't work but haven't tried to get advice yet. Hope this helps a bit. Take care Andrea xx

[angeParticipant]

All the best Tom, hope all goes well, Andrea

[angeParticipant]

Hi Sarah Jane,

Good luck, I hope everything goes well, will be thinking of you. Keep in touch, take care Andrea xx

[angeParticipant]

Hi Tom

All the best, I hope things run smoothly for you.

Andrea x

[angeParticipant]

Hi Tom

That is very informative and clear. I always read the new articles as they are posted. I am particularly interested in personalized treatment for myeloma patients based on genetic abnormalities, especially as I work in medical genetics. I think there seems to be huge advances now and not having started treatment yet it makes me feel more hopeful for myself and everyone else who is further along the line. Thanks for posting.

Best wishes Andrea

[angeParticipant]

Hi Ozzy, sorry you are having such a rough time, I hope they find a way forward for you soon. The one thing I have realised right from the start is how unpredictable myeloma and the treatment can be. There seem to be so many twists and turns for many people but everyone seems so strong and just take each hurdle as it comes. I may bump into you at UHW as I work there Weds Thurs and Fri!

Sarah – hope you are ok and enjoying the sunshine when you can and hope your next steps are easier. I am fine and will possibly have another bone marrow biopsy etc in July to see how things stand.

Take care, Andrea xx

[angeParticipant]

Hi SarahJane

I was wondering how you were getting on. Sorry to hear you couldn't have the stem cell transplant on time but it doesn't seem like you have to wait too long. I am still ok but things are progressing so I don't think I will have much longer to wait before starting treatment. Enjoy the sunshine! Take care Andrea xx

[angeParticipant]

Hi Jean and Happy Birthday to Frank! Hope Frank continues to feel better, take care Andrea xx

[angeParticipant]

Hi Ann

Welcome to the forum. Where are you being treated? There are probably other people on the forum close by. I am 51 and was diagnosed last August and will probably start treatment soon. I wish you and your husband luck in your treatment and recovery. Take care Andrea xx

[angeParticipant]

Hi Maria, lovely to hear from you, I have been wondering how you are getting on. Well done getting through the CTD. When do you have to decide about the transplant? My paraproteins are over 40 now so I don't think I will have to wait too much longer to start treatment, I just want to get on with it! Yes it does seeem we have alot in common working in a hospital and having a 13 year old and being the same age! I have everything in place in work when I need it. The hardest thing for me was telling my family, particularly our children and of course my youngest daughter. Keep in touch. Take care Andrea xx

[angeParticipant]

Dear Vicky and Colin

That is wonderful news

Ange x

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