Patty,
I was diagnosed 1 1/2 yrs. ago and have been through initial treatment and just had stem cell transplant in October.
I have found that you have to be your own advocate if your not getting the response you are looking for. Here are a couple of suggestions:

1- Do your own research as much as you can. The mayo clinc, multiple myeloma .org., American cancer society etc.. This will assist you in arming yourself with some knowledge of the disease.

2- Use this knowledge to ask questions regarding treatment, side effects, next steps. I use to show up to my monthly appointments with the oncologist with a list of questions that I had.

3- I was lucky enough to be able to go to the Mayo Clinic and get a second opinion on treatment and my local team was more than willing to work with them if any suggestions were different for treatment. ( I was happy to find out that they were both on the came page).

4- My biggest issue was that my family doctor failed to diagnose my early symptoms. I assumed all bases were being covered and did not push the issue when I progressively got worse. I was in stage 2 out of 3 by time it was found by a neuro surgeon after multiple fractures in my vertebrae.

Push the issue with your care team. Don’t settle for not being kept informed or receiving the proper treatment. I have been in remission since Nov.2021. Diagnosed in June of 2021.

Feel free to contact me if you need anymore information regarding my journey and any insight I may be able to provide.

Wishing you and your husband the best treatment and recovery possible!

@patty67 Welcome to Mayo Clinic Connect! good for you for questioning the communication style of your care team. What is new to us, lots of words and tests, may be "old hat" to them and they don't realize how confusing it can be.

@dkandalec had some great points in their response to you! I also take a list of questions each month to my doctors. We do often need to advocate for ourselves. Staying with reputable websites for information is critical, and watch falling down the rabbit hole of Dr. Google!

You mentioned getting a second opinion. How close are you to Vacaville? Mayo Clinic Network works with North Shore there, and may be a great start for a second opinion: @patty67 Welcome to Mayo Clinic Connect! Good for you for questioning your care team's approach to communication. What is brand new for us with terms and situations, is "old hat" to them, and they might not understand how confusing it can be to us.

@dkandalec had some great points in their post! I also take a list of questions each month to my doctors, and will have them repeat the answers if I don't "get it" the first time ;))

Are you near Vacaville? Mayo Clinic Network teams up with North Shore there, and may be a great place to get a second opinion. https://www.northbay.org/about/northbay-medical-center.cfm

Do you have any further questions at this time?
Ginger

Dear Patty,
Update: Been in remission for 22 years now.
How do you encourage the team to give you more support? DEMAND IT. Demand it with a smile, and "I know you're busy and overworked, but this is my husband's life we are talking about." The most important thing is to remember that YOU are the customer/client: the one paying.
Where are you seeking tx by the way? I was treated at the Fred Hutchinson Cancer Research Center in Seattle, WA, one of the top facilities in the world and the leading center in bone marrow and stem cell transplants.
At this time in your husband's life, he probably is scared, over-whelmed, may be feeling ill, is in an unfamiliar environment and situation, and doesn't feel heard. He also doesn't feel confident in his team...after all it sounds like communication is sorely lacking.
Can't trust the team? Educate yourselves. Talk to the team leader and the counselor at the facility. Politely and firmly demand that your husband gets the attention he needs for good care. Research shows that patients who advocate for themselves experience a much better outcome. (I was the sweetest, loudest, and longest-living patient they had in the study I participated in. )
For most people, persons of higher status, like professors and doctors are intimating! And your husband is already in a highly stressful and frightening time in his life! The last thing he needs is to feel hopeless, helpless, and intimidated. BTW, what supportive services are offered?
Part of my team included counselors, clergy, caregiver's classes, classes on "what lies ahead," tickets to the ballet (seriously). Every need was met. What supportive (with the emphasis on "supportive") specialists are available to help you and your husband navigate this strange new world?FIGHT! Take back your power.
You are in charge of the outcome, supported by a team of professionals who should be considering both you and your husband's emotional AND physical state.
Here is a link to some books about advocating for yourself and earning that "better outcome."
http://www.thetakechargepatient.com/about-book.html
or....www.AdvoConnection.com
or...Trisha Torrey, Every Patient's Advocate
~ Author of: You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve)
~ Founder and Director of The Alliance of Professional Health Advocates
Lots to choose from! Yes, I still advocate for myself; trying the coordinate all the specialists remains problematic to this day.
Please arm yourself for the fight. Read everything you can, keep track of questions you want answers for, bring your cell phone or a recorder to every appointment, bring family or close friends if you need to show you have your OWN team.
Now get your battle plan together, then go out for dinner with Hubby and celebrate that the two of you are getting things back under control. Remember that "You da' boss!"
Hugs,
Karen