Want to talk about Multiple Myeloma: Anyone else?

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

I have a reservation at the Kahler Grand Hotel. It seems to be the closest. I live about an hour and a half away, so I will drive over the night before and then home after the appointments.

Or should I expect to spend more than a day in the hospital? I am not expecting that. If so, I will have to arrange for someone to feed the dogs and the bird.

Patient portal is all set.

Thanks.

Hi Steve, I wanted to pop in to see how your appointments went. Last we chatted, you were heading to Rochester the end of January to meet with a hematologist about your MM. Any news?

I am just figuring out how to navigate and respond here. Thank you so much for the encouragement. We have an appointment on the 30th with his primary Hemo-oncologist. I have entertained e-mailing him directly with my concerns, but have felt somewhat reluctant as he is seeing 40 patients a day! How is that even possible???

We see the other Myeloma specialist next week to discuss the SCT. I have asked my husband to at least employ the new doc to do the induction tx in tandem with his current doc.

As for me, I wandered into the oncology resource center quite by accident. I am seeing the therapist at the moment. Everyone has the same advice. Be assertive and persistent. I appreciate the supportive words and agree 100% that the squeaky wheel gets the grease.

My husband starts the 3rd cycle of treatment on Monday. His Revlimid did not arrive despite having put the request in on the 13th of January. Not sure that one day is going to impact his 14-day on, 7-day off cycle, but yet again, falling through the cracks.

The very best to you. Thank you for responding. It is inspiring to hear that you have had 22 years!

Warm regards,

Patty

I am a 31 year stage 3 myeloma survivor, Mayo second opinions being key. Some lessons learned surprised us and impacted treatment strategies. My 4 minute YouTube episodes of lessons learned from 31 years with multiple myeloma. Below links to the latest episodes; click “videos” at top to see all episodes
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

Hi, My husband diagnosed May 2022 with MM. Immediately went to Mayo. Did treatment in Duluth Minnesota while working with Dr at Mayo. Had stem cell transplant on November 23 2022. We stayed at Transplant House which was a wonderful idea. Dr wanted us back around day 60 post transplant for checkup. Went back January 26 for all labs and bone marrow biopsy. Dr called last week because all results weren’t back at appointment time..
She said bone marrow looks good but M spike at 0.4 so wants 6 weeks of chemo, revisit her, then hopefully maintenance then…
Anyone experienced needing chemo after SCT? Thanks

I just had my stem cell transplant in oct. of 22. My labs still came back clean of MM, yet I am on a maintenance program of 10 mg. Revlimid for the foreseeable future. This has been the plan for me from both m6 oncologist and Mayo Clinic second opinion.

Have been in remission since Dec. of 21, yet had to delay transplant until oct. of 22. I feel I am doing very good post transplant and went back to work after 100 days.

Hope all goes well for your husband!

I have been trying to get help and told this is what I have, 2 years losing weight 50 lbs in two years unknown cause, symptoms : itching with skin, lesions, emphysema, heart abnormalities, avascular necrosis right hip, no alcohol, no steroids, increased all RBC, double vision, newly diagnosed Ana positive lupus, with kidney involvement, stage 3a. I’ve been label a psychiatric case, 4 doctors in 4 years, can’t get doctors to do JAK testing, or tell me anything! I’m really struggling here, not giving up! Greatest fear at female 61, losing independence with a stroke, family history of stoke on both sides of blood family! Any help, suggestions or support is greatly appreciated. In Dallas Texas area! Please help! So thankful I found this group! Don’t want an awful diagnosis but all other avenues are negative and I just need options and info? Thanks! Not so patently waiting….❤️✌️