[elizabethmwm]

New multiple myeloma diagnosis

by elizabethmwm on Mon Sep 03, 2012 6:51 pm

My "road" to a multiple myeloma diagnosis was seeing my doctor for headaches, fatigue, shortness of breath, etc. After labs and hemoglobin level of 5.4, I was admitted to the hospital for blood transfusions and more tests. In 2 days my team of drs had a tentative multiple myeloma diagnosis which was confirmed by a bone marrow biopsy. I am going to MD Anderson on 9/10/12 for a second opinion before starting any treatment. The hematologist/oncologist here said I have 30% plasma cells and would stage me at Stage 2. He wants to start me on a Rev-Dex regimen. I want the second opinion because my sister said "you may have only once chance to get it right" regarding treatment and, of course, I want to get it right! I have received a total of 7 units of blood. I feel good now but am nervous about treatment. Of all the websites and message boards I have looked at, I liked this one the best.

[mrsv118]

Re: New multiple myeloma diagnosis

by mrsv118 on Tue Sep 04, 2012 8:27 am

Welcome,
So sorry about your diagnosis.
Your sister is correct, get it right. I have heard a lot of people who post here go to MD Anderson, so It must be a great place. Go get your second opinion and then start knockin out those cancer cells!

Good luck!

[Ricardo]

Re: New multiple myeloma diagnosis

by Ricardo on Tue Sep 04, 2012 8:30 am

Hi Elizabeth,

Welcome to the forum. I'm sorry you're here because you may have myeloma, but I think you've come to a good place for information and support.

I think you're also doing the right thing to get a second opinion. Anyone diagnosed with myeloma should definitely go see a specialist at a major cancer center for a review of their case and advice on the best treatment to pursue.

Also, if you haven't done it already, check out the clinical trials listed at

http://www.clinicaltrials.gov

Look for trials that are currently recruiting patients and which are oriented to newly diagnosed patients. There may be trials close to you, and participating in a trial may reduce your costs and get you easier access to some of the newest treatment options.

Good luck!

[Christa's Mom]

Re: New multiple myeloma diagnosis

by Christa's Mom on Wed Sep 05, 2012 1:12 pm

Hi elizabethmwm,

Sorry that you have had to join this little "club" but you are in the right pace! The Beacon is an excellent resource for news about progress in the treatment of multiple myeloma, and the many people who post and share their stories are exceedingly honest about the ups and downs of managing their disease.

One thing you will find is that there is no "one size fits all" answer to anything related to multiple myeloma. Although docs can guide you toward a particular treatment based on your type of myeloma and whether or not you have any high-risk characteristics, no one can, with certainty, project how well a particular drug will work for you, or how well you can handle the side effects.

I'm not sure I agree with the "one chance to get it right" -- that actually sounds like a lot of pressure at a time when you already have more than enough pressure to deal with! Having said that, there are a lot of questions that will come up -- how aggressive do you want to be in treating your multiple myeloma? Are you a candidate for a SCT? If so, do you want to do it early in the disease, or at first relapse? Do you want to participate in a clinical trial? ...etc. Educate yourself on all of the options, but there are no right answers to any of these questions...only whats right for you.

Lyn