Multiple Myeloma: Come introduce yourself and let's talk

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.

Thank you.

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.
http://health.usnews.com/best-hospitals/rankings/cancer

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: http://www.mayoclinic.org/diseases-conditions/multiple-myeloma/basics/preparing-for-your-appointment/con-20026607

The Multiple Myeloma Research Foundation may be another source for information: https://www.themmrf.org

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?

@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?

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.

Thanks for the message and info @totopeg. It reminds me that we haven't heard from @mehz4802 and @jan52241 for a while. How are you doing?

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

Hello @ozys. I am Scott and I, too, am a caregiver. My spouse had brain cancer and the doctors at Mayo, Rochester were awesome for her too. Always listening and adjusting for over 14 years.

As a fellow caregiver you might find the discussion group here on Connect for caregivers of interest. You can click here to see the topics currently being discussed and you can always start a new one if you want.

You can just click this link https://connect.mayoclinic.org/group/caregivers/?tab=discussions

Peace and strength!