Want to talk about Multiple Myeloma: Anyone else?

Hi! Diagnosed in April 2021 but probably had since February 2020. Had very little bone damage and was told in remission after Darzalex, Velcade and Dexamethasone. Put on Darzalex maintenance after RMD bone marrow biopsy. Had lung issue in October. Had an X-ray, said no pneumonia but a bit of something in right lung. Tried to get lung doctor appointment but no call back. Called oncologist who ended up scheduling another X-ray, then a CT scan, then PET, then lung biopsy. Told 12/27 it was back plus ended up with spine and rib damage. Very depressed and going to Mayo in 2 weeks but probably too late.

I’m active after 30 years with stage 3 myeloma. Mayo second opinions were critical when my Cleveland oncology team told me I had no options left and needed hospice care. That was in 2001. Many reasons for hope with today’s myeloma treatments.

Hi @tml, I’d like to add my welcome to Jim’s. I’d also like to bring @gingerw @wyom1998 @ancopau1998 @auntieoakley into this discussion.

I’m sorry to hear that you’re dealing with depression as well as myeloma. When you are a Mayo Clinic for your upcoming appointment you could ask about a consult with an oncology social worker. Do you know about their role on the cancer team?

Not really.

Learn more about oncology social workers here:
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Thanks!

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?

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.

Rochester

We hike and bike and travel but now guess with no immunity I am doomed. How could I let this happen!