Anyone DLBCL return 30 days after CAR T transplant?

Posted by mwrw @mwrw, Jul 9 1:12pm

Has anyone had Dlbcl return 30 days after CAR T cell transplant?

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Lori, Volunteer Mentor | @loribmt | Jul 22 6:38pm

In reply to @andreamimi6 "My daughter had her infusion yesterday - 200 million car t cells fighting her lymphoma! Today..." + (show)

@andreamimi6
Hi Andrea. Thank you so much for the update! We’re all pulling for your daughter.
Having an appetite was a real win for today and as a mom, I know that made you feel pretty relieved! When our kids don’t eat (no matter their age) we get all antsy. ☺️
Sending a hug!

andreamimi6 | @andreamimi6 | Jul 23 12:51pm

Well,her appetite is off again but to be expected. She had a rough night with fevers and today her fever has come back and that is to be expected. There has been no emergency situation, the staff is on top of things.As a mother, it is just a comfort to be with her!

Lori, Volunteer Mentor | @loribmt | Jul 24 8:28am

In reply to @andreamimi6 "Well,her appetite is off again but to be expected. She had a rough night with fevers..." + (show)

@andreamimi6 It's wonderful for both you and your daughter that you can be together during this time. Who better to be the caregiver for your daughter than you. ☺️ But as a bone marrow transplant recipient, which is similar to your daughter's CAR-T in some respects, it's pretty rough on the caregiver with feeling a bit helpless at times. I watched my husband age while he was helping me.
Your daughter will have days of the proverbial "two steps forward and one step back" the next day. Slow and steady recovery is ahead. The first week or two are the hardest. So hang in there! We love getting updates ...we become a pretty tightly knit family on Connect. ☺️

Are you lodging nearby and then visit your daughter daily?

andreamimi6 | @andreamimi6 | Jul 24 8:47pm

In reply to @loribmt "@andreamimi6 It's wonderful for both you and your daughter that you can be together during this..." + (show)

@loribmt
Yes,we are.
Today was not great for my daughter- lots of fevers and she needed a transfusion... all to be expected. I guess tonight they will be giving her steroids and another medicine. Poor kid...she is on a roller coaster ride.
I am not the sole caregiver..her boyfriend is helping and her older sister is coming next week- lots of love surrounding her 😍.

Lori, Volunteer Mentor | @loribmt | Jul 25 10:00am

In reply to @andreamimi6 "@loribmt Yes,we are. Today was not great for my daughter- lots of fevers and she needed..." + (show)

@andreamimi6 Good morning, Andrea. This recovery period will definitely be a bit of a rollercoaster ride for your daughter. But each day gets her closer to a healthy life. She's been through so much already but the time there's a light at the end of the tunnel and it's not an oncoming train. ☺️

Sounds like she has an amazing support system with you, her boyfriend and sister! That's awesome and the motivation from all of you will keep your daughter's spirits up. 💕

andreamimi6 | @andreamimi6 | Jul 25 4:39pm

In reply to @loribmt "@andreamimi6 Good morning, Andrea. This recovery period will definitely be a bit of a rollercoaster ride..." + (show)

@loribmt
Oh thanks! I love that expression- light at the end of the tunnel and it's not
a train! I am going to use it.
Andrea

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