Want to talk about Multiple Myeloma: Anyone else?

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!

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

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.

Never too late!
I remember feeling that exactly when my husband was diagnosed and they were talking about how advanced his disease was. By the time it was diagnosed it had eaten holes in every bone in his body, and a couple of vertebrae were broken and collapsing. He was extremely anemic, had the worst mastoid infection the doctor had ever seen and was very tired and depressed.
This was almost 12 years ago and treatments were limited to velcade injections, revlomid, dexamethasone, and transplants.
First thing I did was start getting informed, the International myeloma foundation online was a great source of information.
Then after biopsy, we went to Mayo. Who instead of telling us there was no hope said they would expect him to do well. Deep breaths finally came.
He is in the bird room partying with the parrots as we speak. He has a decent quality of life and we make our own fun.
He has had a few bumps in the road but all in all we look at each other and laugh and say “gee, you know, life is good”.
The moral of my story is, “Never Too Late”. It can be heartbreaking to find out a cancer has come back, but our great doctor always reminds us that this is a marathon, not a sprint. It will come back and when it does we will send it packing again. There are a dozen or more tools in the box now to treat it when it starts growing.
Mayo is exactly where you need to be. They are amazing and just being there might bring a sense of hope, but please tell your doctor you are having some situational depression with this. Honestly it is really common with any cancer to need some better living with chemistry for a while.
Did you go to Mayo before? Which Mayo location? Do you have to plan travel?

Rochester

No and even though read myeloma crowd and said get a specialist I was referred to our local provider who is regional and hospital claims affiliation with Mayo. Actually only uses some of their tests I found out. Should have gone last May but wanted treatment quickly and was given Darzalex and Velcade. Worked well with a negative MRD in September but in a few weeks began having what I thought were lung problems. They kept doing tests from end of October until mid-December, 12/17. The doctor (who was assigned after my doctor left on maternity leave) told me on 12/27 that the cancer was back and to come in on next treatment date for Velcade but still monthly maintenance on Darzalex. On 11/30 had a scheduled appointment with my doctor. I had planned a trip back in January thinking vaccines would make a difference by December. I had wanted to ask the doctor if I should go and what was the status of my lung issues but she left early and went on maternity leave the day of my appointment. I had no idea she was pregnant. No one shared or referred me to another doctor. I asked the PA who said have a nice time and was only scheduling tests not able to share any information. When I came back a lot of damage to ribs and spine by next treatment date and I totally freaked. I finally had a great deal of pain a few days after my resumed velcade as the rib broke. The weird thing is I had no pain the whole time I was gone just a tingling sometimes. Made Mayo appointment but seemed to have an awful time getting the pathology slides sent. Both the hospital and the cancer center did not get my waivers and I had to hand carry them to the hospital lab and finally get the MRD doctor’s nurse to use my waiver and get that sent. It was on a Monday but she had Tuesday off so said would do the paperwork on Wednesday. It appears to have arrived only yesterday. My appointment is Monday. I began all this on 2/3! How can both have gone astray? I hope I make it there as leaving here at 4 for a 6:45 flight. Am exhausted already from the last two months. I know there are other options but do not live close to Mayo. I do not want to go back to these doctors. I am hoping someone at Mayo will help me find someone but worry. After being told in remission and really having none, I am not hopeful. I have meds but as an obsessive person, they really do not do much. Very tired and sad and unhappy that I waited so long and now have damage when had none just a clavicle issue that shrunk back by 9/27. Now I worry cannot repair. Asked if something would help and told zometa which I did get but not sure if helping as only had twice. I know there are drugs that can be used but I am not sure I have the fortitude to go through this again.