Want to talk about Multiple Myeloma: Anyone else?

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?

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

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?

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.

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.

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

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?

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?