1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Starting pre-tests for CAR-T infusion for multiple myeloma

Posted by 4health4bonnie @4health4bonnie, Mar 14 4:16pm

I am just starting my pretests for my car t infusion on March 26. at OHSU. It is hard to not know what my reaction will be. I am staying positive, and I have good support.

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4health4bonnie | @4health4bonnie | Apr 30 1:21pm
In reply to @loribmt "This is fantastic news, @4health4bonnie! You have no idea how encouraging this update will be for..." + (show)
@loribmt

This is fantastic news, @4health4bonnie! You have no idea how encouraging this update will be for anyone going through CAR-T Cell therapy! Recovery can’t be rushed, which can be frustrating when you want to feel 100% right away. But I think you’re able to really get a sense of your steady daily improvement over the past month, which is awesome! What’s been your most difficult challenge?

Jump to this post

Feeling fatigued. I also had an itchy back and having a picc affected my ability to sleep. I have been really lucky only having high fevers for 24 hours. I was in the hospital for five days.

Also, I am getting tired of the isolation. Not being able to drive will be challenging the next three weeks. I had my caregiver before to shop etc. i think I have found someone to help me.
I also miss my doggies who are home in Roseburg. I am so happy car t is working! Its worth all of it!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 30 6:01pm
In reply to @4health4bonnie "Feeling fatigued. I also had an itchy back and having a picc affected my ability to..." + (show)
@4health4bonnie

Feeling fatigued. I also had an itchy back and having a picc affected my ability to sleep. I have been really lucky only having high fevers for 24 hours. I was in the hospital for five days.

Also, I am getting tired of the isolation. Not being able to drive will be challenging the next three weeks. I had my caregiver before to shop etc. i think I have found someone to help me.
I also miss my doggies who are home in Roseburg. I am so happy car t is working! Its worth all of it!

Jump to this post

Hi Bonnie. Time seems to go by slowly when you’re in isolation and not able to enjoy your usual activities…I remember it well. But you’ll be home soon enough to your doggies and getting back to driving! When I had my transplant, our old doggo had passed away a year or so before, so I didn’t have that worry about his care. I can’t imagine being separated for that length of time from my babies. They’ll be happy to see you too!

Hopefully you’ll be able to work out the caregiver situation. It’s not as though you need full time care, but you will need someone to run errands, take you to the doctor and the like. Keep your eye on the prize, my friend. ☺️

REPLY
mohusker | @mohusker | May 1 9:21am

I’m just edged over two years since my cart cell transplant. I recall dreading the three days of chemotherapy before having heard what stem cell transplant recipients told me about the misery that they went through. I was pleasantly surprised that I didn’t feel bad at all from the chemo doses. I am now doing an infusion every six weeks and would know I was sick if cancer had not eaten part of my vertebrae. Stay calm, you will be okay. I’m in my fifth year of dealing with multiple myeloma and still kicking, just not as high. Celebrating my 82cnd birthday today.

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4health4bonnie | @4health4bonnie | 2 days ago
In reply to @loribmt "This is fantastic news, @4health4bonnie! You have no idea how encouraging this update will be for..." + (show)
@loribmt

This is fantastic news, @4health4bonnie! You have no idea how encouraging this update will be for anyone going through CAR-T Cell therapy! Recovery can’t be rushed, which can be frustrating when you want to feel 100% right away. But I think you’re able to really get a sense of your steady daily improvement over the past month, which is awesome! What’s been your most difficult challenge?

Jump to this post

I saw my oncologist today. She is very happy with my tests results, and she said I was doing great. I feel fairly normal. My platelets are coming up and my neutrophils were ok after seven days - over 1000 but not quite normal, so Im still getting growth factor shots. My next one may be in eight days after my last one. Maybe I wont need one! Very happy that car t is working!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 1 day ago
In reply to @4health4bonnie "I saw my oncologist today. She is very happy with my tests results, and she said..." + (show)
@4health4bonnie

I saw my oncologist today. She is very happy with my tests results, and she said I was doing great. I feel fairly normal. My platelets are coming up and my neutrophils were ok after seven days - over 1000 but not quite normal, so Im still getting growth factor shots. My next one may be in eight days after my last one. Maybe I wont need one! Very happy that car t is working!

Jump to this post

Feeling fairly normal is a huge sign of progress! I’m so relieved and happy for you, @4health4bonnie! I know you had been so concerned before going ahead with the CAR-T therapy for your MM.
Your story will be very inspirational for others who might be facing a similar situation. In fact, a new member joined in regard to his mom considering CAR-T cell Therapy for her relapsed MM in this new discussion:
CAR-T after MM relapse 13 months post ASCT (autologous stem cell transplant).
https://connect.mayoclinic.org/discussion/car-t-after-mm-relapse-13-months-post-asct/
I hope @jrbris23 sees this latest, (and previous) post that you’ve shared about your experience! All very encouraging!

Fingers crossed that you won’t need any more growth factor shots! Keep up the good work. Hugs!

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