[HOG1411]

Just diagnosed with myeloma - what should I expect?

by HOG1411 on Mon Apr 18, 2016 8:49 am

I am 46 and just now found out last week that I have myeloma, but they don't know which one it is. The doctor doesn't know why plasma cells are in my chest wall – like a lot of them. He did protein, bone marrow biopsy, and ordered a PET scan for this week.

I can say I am not worried because I want to be strong for my family, but just knowing my life has changed in a second and what is to come really depresses me.

What should I expect in the next few weeks?

Thanks

[Nancy Shamanna]

Re: Just diagnosed with myeloma - what should I expect?

by Nancy Shamanna on Mon Apr 18, 2016 10:00 am

Welcome to the forum, HOG1411. Sorry to hear that you have myeloma and have to start to think about treatments for that also. I think that from the BMB plasma cells would be tested to see if you have any genetic issues such as translocations or deletions. Also, you would be tested by serum free light chain assay and also for the monoclonal (M) protein by serum electorphoreis. Those are both blood tests. If you had skeletal X-rays or I think an MRI, those could show if there are 'lesions' (damage) on your skeletal system too. A PET scan at least can show if there are concentrated areas of cancer in your system. Good luck, and I hope that you are seeing an hematological oncologist who has a lot of experience with myeloma patients, or who just sees those patients. If you let us know how everything is going, there are knowledgeable people here who may be able to help you to sort this out, also.

[lrankin]

Re: Just diagnosed with myeloma - what should I expect?

by lrankin on Mon Apr 18, 2016 8:30 pm

What country are you in? Different countries approach myeloma differently. Find a myeloma specialist - don't just see your local hematologist/oncologist. if you tell us the state or country you live in, the forum participants can offer suggestions for specialists. There also may be a myeloma support group in your area.

My husband was 47 when he was diagnosed a year ago. Your life has changed. You will find you will keep coming to decisions about your treatment. This forum is amazing to help you understand certain things either by searching it and reading past posts or by posting your own.

Lastly, there is a lot of hope as there are new treatments. Keep us posted.