Want to talk about Multiple Myeloma: Anyone else?

@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

My husband was diagnosed in October and will be having BMT in February. We would love to have a conversation if you are willing to talk about your experience.

I was diagnosed with myeloma in 1992 and have been in remission the last decade, no maintenance. 4 minute YouTube videos of lessons we’ve learned and strategies used may help. Below links to the latest episodes; click “videos” at top to see all episodes
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

@papad Welcome to Mayo Clinic Connect!

Here is a conversation within this support group, about BMT and patient stories:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I am tagging @loribmt, a fellow mentor, who underwent a bone marrow transplant for AML three years ago. I believe it would be a similar experience.
Ginger

Good morning, It’s been a few months and I’m just wondering how your husband is doing after his transplant. I know there was a postponement because of an infection so I’m hoping the transplant was able to take place and that your husband is recovering nicely! Are you still in Rochester?

Good morning, @papad I’m joining my fellow mentor, @gingerw in welcoming you to Mayo Connect and happy she brought me into the conversation regarding stem cell transplants.
It’s quite a journey but well worth the effort. There are different types of Stem Cell Transplants (SCT). I had an allogenic transplant using cells from an unrelated donor. I’m anticipating that your husband, because of his MM diagnosis, will be having what’s called an Autogenic SCT. That would be using his own cells. Do you know what type he’s scheduled to have?
We have other members in our group who have gone through Auto SCTs, are doing really well and have shared their stories with us.
@gingerw already introduced you to @dkandalec and I’d like to also add @capthondo who received an auto transplant for another blood condition and has shared his story with us here:
Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/comment/747475/
Another trouper from our auto transplant group is
@countrygirlusa who has shared her story in this comment
https://connect.mayoclinic.org/comment/716285/
More shared experiences can be seen here:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I found another older conversation about the timing on auto transplants that might be helpful. While dated the information remains the same.

Auto stem cell transplant: What can we expect for timing
https://connect.mayoclinic.org/discussion/auto-stem-cell-transplant/
When undergoing a transplant, usually the first big hurdle is finding lodging for the 6 weeks if it’s an auto SCT or 4 months for an Allo-SCT. Will your husband’s transplant be near your hometown?

Thanks for checking on us. Tom had his BMT on Dec. 9th. He had some syncopal episodes and they were afraid he would fall so he was an inpatient for 10 days. He didn’t have any mouth sores but did have a very painful throat and esophagus. That was his worst side effect.
He got out of the hospital on Christmas Eve and was able to leave Rochester on New Years Eve. Recovery is going very well. Eating again and walking with just a cane. He has had some irregular heart beats and will be receiving a heart monitor tomorrow. I think his care team is very happy with his progress for a 78 year old.
Scheduled back to Mayo in March. We couldn’t have been happier with his care at Mayo Rochester. His care team was amazing!!

My brother-in-law died from multiple myeloma last year. My sister, her husband struggled with symptoms after he retired age 65. He didn't get diagnosed until he could eat or swallow or walk; the intense pain was curse. 3 heart attacks year before it started so weekly he landed in hospital for several days at a time, dealing with heart issues. Blood test overlooked from heart problems, until few weeks before his death, skip over from over lapping symptoms from other health conditions. It was undiagnosed until month he died. My sister had same thing, she went to doctors for years and years, complaining about symptoms. She went to specialist, 3 days before diagnosis, doctor said it was all in your head. 3 days later, she went to ER and did cat scan, 10 in. and 8 in tumor witch spread across torso area, doctors removed pounds of cancer that pushed against her stomach, lungs, liver, kidneys, batter and into lymph-nodes and gave her 3-6 months to live, it's been painful and crazy 20 years and in wheel chair, still breathing 5 years later age 60. No insurance after her husband died. My younger sister died age 40, broken her leg and saw doctor 2 hours before she died and he said nothing was wrong with her, but coroner told us it was unknown blood disease; he couldn't figure out. I was lucky, i was diagnosed with polycythmia versa (Sept 2022) / hospital missed same numbers 2020 but 2023 just diagnosed with Myelofribrosis / leukemia. I'm so glad for any diagnosis and I can research what I have and have support that my family never had. It's a blessing to know! Any information is miracle and a gift.

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

This is wonderful news to hear and I’m so happy your husband is doing so well! What a positive way to begin your new year. His strength and stamina will return and his progress is impressive! I’m biased, of course, but Station 94 and the entire BMT team at Mayo-Rochester is the best. 😉

Thank you for the update and give my best wishes to your husband. If he’d like to share his transplant journey sometime, I’d love to have him join me in this conversation with other members who are telling their story.
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
We never know who will be encouraged by our experiences. Keep me posted with progress checks, ok? 🙂