Want to talk about Multiple Myeloma: Anyone else?

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 Lori,
Thank for your answer.
Three years ago the Hematologist diagnosed muy wife whith MGUS, IgA Kappa.
Today her monoclonal spike is 0,38 g/dl.
Inmunoglobulin A 580 mg/dl
Light chain Kappa 366 mg/dl
Light chain Lambda 82 mg/dl
Kappa/Lambda 4.5
Free Kappa 781. g/l
Free Lambda 11.3 g/l
Free Kappa/Lambda 69.

During the three years blood tests every three months and according to the doctors she has not needed treatment.
This year she has had severe pain in her hands and had a carpal tunnel operation.
Now he also has those dark spots on his skin that you can see in the photos.
She suffers and I am very afraid of these symptoms even though the doctors say that there is no relation to the MGUS or its change to Multiple Myeloma.
What do you think of everything?
Thanks for everything.

Hi Steve, Welcome to Mayo Connect! You’ve popped into the right conversation as Multiple Myeloma is a hot topic.
First, I’m happy to see that you’re heading to Mayo-Rochester in 2 weeks. They’ll take great care of you there!
That’s my home-away-from-home, having spent many months there with my bone marrow transplant.

I’m going to refer you to this comment I wrote yesterday to another new member, @papadrew. It appears earlier in this same discussion: https://connect.mayoclinic.org/comment/797477/

It will introduce you to other members in the group who are familiar with MM either through personal experience or with family members. Fellow Mentor @gingerw has been on quite a journey with her MM, @agent007, @bscham, @patty67 and others have conversations in this group.

Don’t hesitate to tag any member with their @name to ask questions in the forum. We’re all here to help each other on our journeys.

Are you familiar with Rochester with lodging and restaurants? Is your patient portal set up with Mayo Clinic? That will be your main hub of communication.

Hi @eulo, I’m pretty familiar with stem cell transplantation from personal experience. I received an allogenic (donor cells) bone marrow transplant 3-1/2 years ago for Acute Myeloid Leukemia. I feel amazing, like nothing has ever happened.

I took a quick peek at one of your previous posts to see that your wife has MGUS. Has she been diagnosed with multiple myeloma? If it’s been recommended that she receive a SCT for MM, she may be allowed to use her own stem cells. That’s called an Auto or autologous transplant. That would be determined by the oncologist/hematologist transplant doctor.
There are similarities to the procedures with auto transplant generally a little easier…usually less pre-conditioning chemo, shorter recovery time because the cells are not foreign to the body. But both transplants are a chance at a new life and worth the effort. It’s not unusual the first few weeks for extreme fatigue, nausea and other side effects.

To help explain how a stem cell transplant works, Mayo Clinic has a great video you might be interested in reviewing. https://www.mayoclinic.org/tests-procedures/bone-marrow-transplant/multimedia/stem-cell-transplant/vid-20084647

Has a transplant been recommended for your wife?

Hello Lori,
Do you know about stem cell transplantation and how it is performed?
Thank you.

Hi, I am new to this group and to Multiple Myeloma. Currently I am diagnosed as high risk smoldering with a prognosis of progressing to full MM in 4 to 10 months or so (6 to 12 months, two months ago). My Oncologist is with a local hospital, but I have an appointment at Mayo in Rochester in two weeks.

I have been experiencing a lot of fatigue, which I ascribe to the anemia that comes with MM. I have other of the lesser symptoms including some neuropathy, occasional dizziness, chronic kidney disease, etc. But no bone lesions or tumors. No pain, just tired.

I have been missing work in the last few months, and slowing down. My Oncologist says that I should qualify for disability insurance, which will pay me 60% of my current salary for up to two years. I'm 67 now, so that would mean retiring around 69 or 70. That helps my Social Security benefit greatly.

I wonder how many of you are continuing to work through the stages of Multiple Myeloma?

How debilitating have you found the SCT process, the chemo, and other phases of treatment? I expect that I will be retiring in the coming weeks. I want to move to Phoenix to be near the Mayo clinic in a warmer climate, and I want to make the move now while I am reasonably healthy.

But I am wondering if I should find a place in a senior independent living community, or just get an apartment on my own. I am single. My ex-wife passed away a year ago. So, in my own apartment I would be almost completely alone. In a senior community they would be more likely to have someone who would check in with me from time to time. But in your experience, was that necessary as you have received treatment for Multiple Myeloma?

Thanks.

Steve

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? 🙂

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

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.

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!!