Multiple Myeloma: Come introduce yourself and let's talk

Posted by MZ @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he's not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

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I am a three year survivor of Multiple Myeloma. I receive injections of Velcade every 2 weeks, with 8 mg of Dexamethasone. Velcade is my second chemo drug. Good news is, there is always a new drug! Some ups and downs during this 3 year period. We were going to try a bone marrow transplant, but that did not go well for me. Right now my numbers look good, so I have a lot to be thankful for. I have wonderful doctors and family support which is key. If your doc is not listening to you, find one who will.


@mehz4802 – welcome to Connect. In addition to @johnwburns @caretothepeople and @jan52241, I’d like to bring a few more Connect members to this discussion about multiple myeloma. @scmsable @user_ch3a1e07f @mamaellie @totopeg @larryfairtax can you share with MZ what type of treatment and follow-up you’ve had?


Right now, I’m doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don’t show and outward signs of illness he still doesn’t get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?


Hi @mehz4802 – your doctor should have discussed the stage of your MM with you. If not, that’s information you need and that you’ll want to ask questions about. @johnwburns has a wonderful point that a 2nd opinion is wise in the case of cancer to not only learn more information and get an accurate diagnosis, but also for peace of mind.

Mayo Clinic offers a guide to Multiple Myeloma that has specific questions to ask, which may be helpful:

The Multiple Myeloma Research Foundation may be another source for information:

In reply to @mehz4802 "Thank you." + (show)

Thank you.

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I forgot to include this link to the US News site for finding the best hospital near you. I don’t think that it ranks individual doctors but it does give their background and associations. Might help.


I can’t speak to whether your doctor is right or not, but it sounds like you are the type of person who requires more information and you should have access to it. Sounds like a second opinion, preferable at a world class clinic, would help put your mind at ease or let you know how you should be managing this.

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