Want to talk about Multiple Myeloma: Anyone else?

I am scheduled for an appointment shortly for the implantation of
"Interstim" ( sacral nerve stimulation to treat my bladder , nothing worked before and I have MM ). I am not very clear as to what I am going to get on the firstbappointment ( 1-2 weeks test, stimulator taped on my back before final inside implantation ), despite my questions .
Has anyone undergone the proprocedure ? and could comment on it and its efficacy ?
J would appreciate. Thank you

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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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@frazer1 I was diagnosed with MGUS when in my early 50's and I just turned 69. I see my hematologist annually for a blood work up and every 3 years I get skeletal x-rays and a dexa scan. This past year when I had my annual exam my hematologist did not order the electrophoresis checking my free light chain kappa/lambda ratio. He said it was an oversight but all my other blood values and X-rays were normal and could wait until my next appointment in October. But he said I could have it done if I wanted to since my kappa/lambda ratio was low .13 (low nl. is .26). the year before. Considering my MGUS was a coincidental finding years ago and I am now approaching the age when Multiple Myeloma usually develops, I might get it done earlier rather than later.
All that being said, I have lived with and monitored my MGUS for many years. I understand with my kappa/lambda ratio dropping I have a greater chance of developing MM than if it were normal-- one study I read said 3% chance per year vs. 1% per year. But with everything else being normal this year I'm just in a holding pattern until something else changes. For all these years with MGUS, I have just tried to take each day as it comes, do what I can to monitor my condition and not worry about tomorrow, because I know that worry adds to stress and stress causes physical changes and problems in my body. Blessings.

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Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for $17,000, and 30% of that is my co-pay. Bristol-Myers Squibb offers some relief, but it's limited. Has anyone found other sources for assistance with co-pays like this?

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I hope you will find peace knowing I am 92 and just diagnosed with MGUS strictly by accident. I developed Trigeminal Neuralgia suddenly. Neurologist sent me for blood tests and there was that little m. I may have had it for a very long time, and just not known it, and probably would have been happier not knowing it now It has become that "one more thing" to worry about. I seem to be very healthy, and I am relatively sure you will be at 92 also. With all the new modern medicine I would say your chances are better than mine ever were. Smile, the sun is shining, and you were able to get out of bed this morning.
Gina5009

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Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for $17,000, and 30% of that is my co-pay. Bristol-Myers Squibb offers some relief, but it's limited. Has anyone found other sources for assistance with co-pays like this?

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