After Being Treated For A Year For Kappa Light Chain Mm, We Are Going To See Bone Marrow Transplant Specialist ,questions We Should Ask? | MyMyelomaTeam

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After Being Treated For A Year For Kappa Light Chain Mm, We Are Going To See Bone Marrow Transplant Specialist ,questions We Should Ask?
A MyMyelomaTeam Member asked a question 💭

Would like to hear from anyone who's had bone marrow transplant..post transplant..
Recovery time...expected life span...quality of life etc.

posted October 24, 2020
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A MyMyelomaTeam Member

I had my transplant in January and it took me about three months or so to feel good. The hardest part was to get my muscles back in shape after not exercising or walking any distance but I persisted. I am 70 and as far as life expectancy......I have lived longer then I thought I would. I bet you didn't think about how long you would live before your diagnosis. It has taken a while for us to figure out a maintenance drug but I am now on Revlimid 5mg for 14 days and 7days off and my side effects are manageable. It has taken a while to figure out what I needed to take but I might be there. I hope this helps. As they say on this sight " we are all different". Here's to a long and fruitful life. Don't worry be happy.

posted October 24, 2020
A MyMyelomaTeam Member

A complete response is no detectable cancer in your blood after treatment, partial response is having greater than or equal to a 50% reduction in myeloma cells after treatment, a very good partial response is having 90% reduction in cancer cells. Stable disease is when the numbers and CRAB features are stable. Biochemical progression is when numbers are getting worse, but the patients doesn't have any worsening CRAB features. Disease progression is worsening numbers and worsening CRAB features. Hope this helps

posted November 2, 2020 (edited)
A MyMyelomaTeam Member

I did not continue too isolate once I was home with no diet restrictions but did use boost when I was not very hungry because everything tasted like sawdust too me. When I was first diagnosed I had severe anemia and was sleeping 20hrs out 24hrs until I had the SCT but even after that I slept quite a bit but your body needs the extra rest too heal. As for covid I always wear a mask when I am out and about.

posted November 1, 2020 (edited)
A MyMyelomaTeam Member

I just had one in July. I had my three month post transplant tests today. Waiting for the results. I was allowed for the first time in 3 months to eat take-out food tonight .
The time line as I remember was, I spend two weeks in the hospital. I was week for about a day or two. They had me walking laps in the hallway and doing PT.
My hair fell out about a day or two after I left the hospital.
I could eat during the whole process and actually gained weight. Milk and Ice Cream caused some stomach issues but that’s normal since the chemo that kills the old bone marrow also kills the good bacteria in the stomach. But I was having ice cream anyway and I adjusted.
Don’t be scared of SCT. It was a lot easier than what I went through before my diagnosis. The weirdest part was having that blood catheter in my chest for those two weeks in the hospital for the collection, introduction of the stem cells and a easy way for them of collecting my blood.
People were scared of SCT but it wasn’t bad for me.

posted October 27, 2020
A MyMyelomaTeam Member

A complete response means too go into partial remission,as good as it gets. A failure means you don’t get into partial remission. It takes awhile before they get the right combination of drugs that works for you because it is definitely an individual thing.

posted November 2, 2020

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