Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

wkathy | @wkathy | Jan 18, 2023

In reply to @capthondo "I’d be glad to share my experience. I have an aggressive form of lymphoma, Peripheral T-Cell..." + (show)

@capthondo

I’d be glad to share my experience. I have an aggressive form of lymphoma, Peripheral T-Cell NOS (not otherwise specified). Therefore my conditioning chemo regimen may be slightly different than for MM.

I live on the Outerbanks of NC so we had to rent a house for our extended stay in Rochester. My wife and I arrived on July 17. The first week were tests of my heart, lungs, kidneys, liver, blood tests, dental exam, and port placement in my chest.

The 2nd week began with a series of shots to stimulate stem cell growth and have them release into my bloodstream. This was followed by 3 days of stem cell harvesting. I needed 4 million stem cells and 500 thousand ALC cells. While I did collect collect 4 million stem cells in 2 days I was 90 thousand short of the ACL cells which required the 3rd day. Stem cell harvesting is easy and relaxing. It lasts 5 hours each day but you can read, watch tv, or nap like I did. I had zero side effects from harvesting.

After a few days of rest, I began my conditioning chemo on August 2 and was administered 6 consecutive days of various chemo drugs. I received a total of 26 hours of chemo during those days with Melphalan being my final dose on day -1. The very next day, August 8th, I received my stem cells. It was a nonevent. My 6 small bags of stem cells were thawed and I received them through my port and was then discharged from my 6 days of inpatient chemo. While I couldn’t smell it, my wife said I smelled like creamed corn for a few days following the transplant. I understand this is very normal and has to do with the preservative used in the stem cells.

I returned to our rental house and began my morning visits to Station 94 the next morning. Vitals were checked, I was weighed, and blood was drawn. If I needed fluids, platelets, or blood I received them.

On the 6th day after transplant, August 14, I began to run a fever as my blood counts were dropping due to the chemo. I was readmitted and began to receive antibiotics. Over the next several days my blood counts bottomed out (nadir period) and I felt extremely weak, developed a very painful mouth sore and did experience a bout with diarrhea, but no nausea . I stayed in the hospital for 6 days. Due to the mouth sore I was able to drink through a straw and eat soft foods. I was released from inpatient on August 19 as my stem cells were beginning to engraft (producing new blood cells). In fact my new cells were increasing so rapidly that I was released to go back home to NC on August 25.

I’m now day +32 and my biggest side effects are general weakness and fatigue as I begin to rebuild my strength. My appetite is good and I have not experienced any nausea or diarrhea. So far all is good.

Sorry for the long post. Didn’t know how much you wanted to know. If you have any follow up questions feel free to reach out!!
Good luck! You’ll do great!
Randy Hondros

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Thank you so much for the details. How much time between your "Evaluation week" of tests and your harvest of stem cells? Did your insurance require pre Auth for eval tests and one for actual stem cell procedure?

Lori, Volunteer Mentor | @loribmt | Jan 18, 2023

In reply to @sarunfeldt "I have a reservation at the Kahler Grand Hotel. It seems to be the closest. I..." + (show)

Good morning, Steve. The Kahler Grand is super convenient…right across the street from the clinic.

As for staying more than a day, that’s difficult to predict. There are times when more tests are required. Things happen very quickly and efficiently at Mayo with appointments set up within hours while you’re there.

What you might want to do is have someone on standby to check on the pets, just in case. The hotel is pretty flexible about extending stays if needed.

Just a note: If you have a lab appointment first thing in the morning with other appointments right after, go to the lab 1/2 hour early! It’s crowed early in the day.
There is a slush time of 15 minutes added at the beginning of each appointment so if you’re running a couple minutes late, just take a breath. But the lab is where most people start the day and it is super busy until about 8:30 or 9.

The clinic is very easy to navigate. All the buildings, Mayo, Gonda and Charlton are all connected and flow easily into each other. Plenty of volunteers in blue jackets to help out. Another navigational tool is to hit the S for Subway level on the elevators. All the buildings are contiguous on that level without a break.
Good luck with your appointments! The hematology department has my full respect so I know you’ll be in good hands. Do you have any other questions?

sarunfeldt | @sarunfeldt | Jan 18, 2023

In reply to @loribmt "Hi Steve, Welcome to Mayo Connect! You’ve popped into the right conversation as Multiple Myeloma is..." + (show)

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.

eulo | @eulo | Jan 17, 2023

In reply to @loribmt "Hi @eulo, I’m pretty familiar with stem cell transplantation from personal experience. I received an allogenic..." + (show)

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.

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Lori, Volunteer Mentor | @loribmt | Jan 17, 2023

In reply to @sarunfeldt "Hi, I am new to this group and to Multiple Myeloma. Currently I am diagnosed as..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Jan 17, 2023

In reply to @eulo "Hello Lori, Do you know about stem cell transplantation and how it is performed? Thank you." + (show)

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?

eulo | @eulo | Jan 17, 2023

In reply to @loribmt "Good morning, @papad I’m joining my fellow mentor, @gingerw in welcoming you to Mayo Connect and..." + (show)

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

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sarunfeldt | @sarunfeldt | Jan 17, 2023

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

Lori, Volunteer Mentor | @loribmt | Jan 16, 2023

In reply to @bscham "Thanks for checking on us. Tom had his BMT on Dec. 9th. He had some syncopal..." + (show)

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? 🙂

khnielsen | @khnielsen | Jan 16, 2023

In reply to @patty67 "Would love to chat. Just starting this journey with my husband. He was diagnosed in November..." + (show)

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

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