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@bscham

Hi @capthondo
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.

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Replies to "Hi @capthondo My husband and I would also like to hear your story. My husband has..."

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

Hi @bscham, I know your husband was anticipating his stem cell transplant in late October. Was he able to go ahead with it? How’s he doing?