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.
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Hi all, I was diagnosed with MM back in March this year. After 5 months if immunotherapy, my MM which is stage 3 kappa light chain is under control with almost normal test result. Next step is to go thru stem cell transplant end of October. Anyone can share their experience with stem cell transplant while going thru it and how successful it has been since dine please.
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Hi @agent007 (love the name and I’m sure there’s a story!)
It’s very good news that you’re responding so well to the MM treatments. Getting to a normal test result shows a reduction in the defective cells and now you’re ready for your Stem Cell Transplant.
Most often for Multiple Myeloma, you’re able to use your own stem cells in what’s called an Autologous transplant. So they want your blood as free from defective cells as possible before harvesting your stem cells, which will then be transferred back to you once you’ve gone through Conditioning.
For most MM patients, conditioning is 1 or 2 doses of chemotherapy which will clear out your bone marrow to make a squeaky clean environment for the return of your stem cells, giving you a fresh start.
One member just recently had an autologous transplant with great results. He just posted this reply to me yesterday. https://connect.mayoclinic.org/comment/746563/
While he didn’t have MM, the procedure is basically the same and the outcome is the goal. Let me introduce you to @capthondo
Where are you having the transplant done? What specifically would you like to know?
I’d be glad to share my SCT experience with @agent007!
Thank you!! This is what I love about Connect! 💕
Let me know how I can share my experience with @agent007
My husband and I would also like to hear your story. My husband has MM and in on his 4th round of Chemotherapy and expecting the SCT at Mayo in late October. They tell us what the whole procedure is but it would be nice to hear it from a patients experience.
You can share your story right here. To make sure @agent007 and @bscham are included, you can just use those @names in the reply. To get started, there’s a larger Comment box at the bottom of this discussion. That’s a good place to post your experience with these two members and it can become a great resource for other members facing a Stem cell transplant using their own cells.
We never know when our experiences can become someone else survival guide.
Thank you for sharing with us!
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!
Thank you so much! It was good to hear you had a positive experience and I wish you a continued good recovery. It has helped to put my husband at ease. I am wondering what facility at Mayo this all takes place at. Also, did you find a house on your own or did you stay with the Serenity House Network?
Everything took place in the main Mayo complex on 3rd Avenue. I had appointments the different buildings, Mayo, Gonda, Charlton, and Eisenberg. All these are interconnected.
We rented directly from an owner we met through an Airbnb site. Only 1/2 mile from hospital, very clean, nice neighborhood.
There is no story behind the name, just a fan from childhood and hoping to defeat MM. I know how autologus stem cell transplant works and I am having it done here in Richmond at VCU massy cancer center which is local for me and no need to travel. I am looking for type of experience while going thru the procedure and success story.
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