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For Those Of You That Had Stem Cell Transplants, Were You Able To Get Back To Your Previous Energy Levels And How Long Did That Take?

A MyMyelomaTeam Member asked a question 💭
Mundelein, IL
April 10
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A MyMyelomaTeam Member

An excellent and timely question! I’m about 18 months into this condition and did induction chemo, ASCT and maintenance. Let me give you an apropos anecdotal observation that is happening while I type this. You may or may not know that I need 2 or 3 naps a day. However we just took a trip to Vermont to see the eclipse and it was wonderful! I drove the entire 7 hours up and had dinner with family and didn’t crash until 10:30 at night. Enjoyed the eclipse, spent the next day in Bernie Sanders’ territory Burlington VT without stopping and just today visited Montpelier and the filming location of Beetlejuice in East Corinth then drove another 7 hours home! It is 9:22pm, we are home and I am wide awake! I feel fantastic! So I can’t explain it but I have more energy and feel better than before diagnosis. Way before! For me the ASCT was a new lease on life, a reboot of the entire system!

To give you more perspective without being too graphic I mainly drank water on the trip so my urine was clear. All the different food up there and bowel movements solid with no diarrhea! Eyes clear and focused; I saw totality with my own unaided eyes and it was spectacular! Physically not tired but the wife and I did nap 1.5 hours yesterday and it was fabulous.

Looking up in the clear cool skies of Vermont at night was amazing! It was like we were on Spaceship Earth traveling the universe! The stars at night and eclipse in the day was spiritually moving. You rarely get that feeling in life. It’s like falling in love. It rarely happens!

April 10
A MyMyelomaTeam Member

I had two Sm trn p it didn't take too long to get back I'm good now. bud

April 14
A MyMyelomaTeam Member

Wow Bud that’s really scary but glad you’re okay. Wow 16 years is quite the accomplishment and I am at 22 years and there isn’t a lot of of us long haul survivors but with the new treatments more and more are living longer and longer lives.

April 17
A MyMyelomaTeam Member

This is Bud
again I had two transplants for a month of myeloma I flatlined with multiple myeloma I've been after about 5 years got cleared them off of myeloma and about 6 months later I got MDS which is almost like multiple myeloma and I had another stem cell transplant all is good I had a little problem with my stem cell transplant with my MDS as I stated I flatlined for almost 4 minutes but other than that right now I'm good I'm going on 16 years I
I still go for my every 6 months check up and all my blood tests and everything is is great so I'm just so happy and maybe so lucky and if it hadn't been my own wife I don't believe I would have made it right now everything is good God takes good care of me I got a good guardian Angel and hope all is well with the rest of you love you all this is Bud you

April 15
A MyMyelomaTeam Member

for me it’s been 6+ years since my back to back SCT and I regained 75% of your energy after about 1 year in a half and it requires you to exercise and walk. For me I have only regained about 85% of my total energy level. I think it’s because of the maintenance you’re put on afterwards to stay in remission as long as possible

April 10 (edited)

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