Want to talk about Multiple Myeloma: Anyone else?

Agreed. Knowledge is power. Hidden knowledge is criminal. oldkarl

Have books on Overdrive but mainly texting! Should read since a few are going to be checked back in soon. Used to live in Indiana. Lots of cornfields there!

Sadly when they said I would have a shorter than average remission, I asked why and she said genetic. I thought I can’t do anything about that. Now I know the doctor meant the myeloma DNA not mine. Again I misunderstood. Seeing that DNA and what genes were detected and what is missing was a shock. No wonder it is so difficult to fight!

Oh, dang! Hope you have an ereader or project to keep you busy. I took the shuttle from Minneapolis/St. Paul to rochester. Never knew it would be a long ride! Lots of corn fields. Told a fellow passenger that I thought we were being kidnapped, much to his amusement.

Relax tonight, have your questions handy, something to keep you busy during downtime [even if it is a restful shuteye], be sure you have a couple of layers to change out of if your body temp need coddling. And give your husband a big hug for being there for you, let him know how much this means to you!
Ginger

Most seem to be on Revlimid. I was fine with Datzalex but think they ignored the spot on my rib seen on the first CT scan but then was determined not to be an issue. Saw that when reread everything but too late. Was wary though that I was actually in remission. Wish I had acted on that premonition but then they were do positive I was, went with that!

Well got up at 3 for the 6:45 flight. Plane had a service issue so we had to deplane and wait. Loaded us back on but arrived as they were loading the Rochester plane. Rushed from terminal C to A and got there a few minutes after they closed the door. The next flight is 4 and were supposedly rebooked but listed as standby. Called hotel to say still coming and they suggested the shuttle, called said 2 spaces left but after going from c to ground they were gone. Now booked for the 2 so Hope we get there by 4 instead of just flying out! And tomorrow at 7:30! No fun yet!

@tml Welcome to Mayo Clinic Connect.
@colleenyoung had tagged me into this conversation, but my apologies for taking a couple of days to respond. As both she and @auntieoakley mentioned, situational depression can be quite its own battle to deal with, especially in a health crisis like you are in. When you relate your history, and the delay/mispronounciations of issues by provider, it's more than enough for any one person to have to deal with! Having a social worker or therapist help you through will be a plus for you. It's hard for your husband to understand if he doesn't have the medical background or would prefer to think that everything is "really okay", when it's not, really. I have been there, done that in my multiple myeloma journey, too!

As for Revlimid. I am on that, plus dexamethasone. I applied though my cancer center's pharmacy, to Bristol Meyers Patient Assistance Foundation, for a grant to cover my co-pays. They needed tax return and financial information. but I was able to get that grant! My co-pay is $0 thanks to them. Here are a two links that you can research for co-pay relief:
https://copays.org/ Patient Co-pay relief
https://www.panfoundation.org Patient Access Network

Sometimes you need to think outside the box for your health! And wallet. What will you do today to relax before your trip? And, please come back to share when you want to, what happens at Mayo. We care!
Ginger

My husband will be with me. Hard for him.

Yes I have a list and scheduled 3 days not knowing as said 3-5 usually. I have my Velcade shots weekly so had to push off one day to get 3 together plus travel. I guess part of my pain is that I know when it happened as had pneumonia and then an X-ray. Pain in clavicle and was given a muscle relaxant. Pain disappeared. Later ended up with a little lump that when shown to doctors, none said get a biopsy so had no idea for a year and a half. I should have just gone to ER immediately! I would have caught it right away and likely saved myself all this. At first prescribed Revlimid but have poor drug plan and my cost almost $3000 a month.

You are in great hands in Rochester. They will work with someone from your area, wherever that is. In our case they had a colleague a couple hours away from our home, and we went to him. It was so worth it. I know it is hard to think of going through it all again, but there are other drugs to treat myeloma. My husband took revlomid for two years with almost no side effects. If you aren’t already, remember hydration is really important.
Don’t be surprised if you get more tests while you are there. We were there for 3 days with his initial visit.
I am feeling very hopeful on your behalf. Hopeful there will be enough positive thoughts coming your way to get you on a better mental track.
Are you working on a list of questions to ask when you meet with the Dr. at Mayo? Do you have someone with you to help listen and support you?