Hi Smarty,
I am one of the forum volunteers. Myeloma can come in various forms, MGUS (which is the pre-cancerous stage), smouldering Myeloma where you have the disease but it is not active, and full Myeloma where it is active. It depends on which one you have as to what is likely to happen.
With MGUS (which stands for a long medical name) and smouldering myeloma, there is a good chance you will not progress beyonf that to get the full disease, or even if you do, it might be years away. They will be testing you on a regular basis to look for changes. Only when they see changes will they take action. So long as you are asymptomatic and the results come back good, then you are in a good place medically.
it is not surprising that you were shocked by the diagnosis, I have full Myeloma and was not aware that I had it so i know what it feels like. The advice you have been given is good advice. So far it sounds like the disease had not progressed significantly, and so long as it stays like that, you will probably not even know you have it. More good advice is to take things one step at a time. I know it will be a big deal for you and you will have to come to terms with it, which might take some time.
Even if the worst happens and the disease develops, it is not the end of the world. Although at present there is no cure for the disease, there are some very good treatments and a lot of people go on for many years to live active, normal, and fulfilling lives. Support of family and friends is very important to get you through these early stages, so don`t be frightened to tell people what the issue is.
There is lots of help out there for you. We are always happy to help in the forum, and if you would like to speak to someone either who has the disease, or is at the same stage you are, we can arrange for you to do so on the phone if you refer yourself to the peer buddy scheme. There is also an excellent As the nurse facility on this site should you have any medical questions or need advice that only a medical practitioner can help with.
Furthermore, there are some good videos and webinars on this website that cover all sorts of aspects. There is a very good one that explains what smouldering Myeloma is, and another one about the psychological aspects of Myeloma. However, as it covers all aspects, there is one about end of life, so I thought I had better tell you about it so that it did not surprise and shock you when you see it. This is something for you which is probably donkeys years away.
So there is a lot there to help you get your head around it. I found that the more that I knew about the disease, and the better I was better able to understand it, helped me with acceptance of it.
Please keep us updated as to how you progress, and if we can help in any other way, do not hesitate to let us know.
Keep your chin up!
regards, Tony
