CAR T CELL Christmas
I am preparing for CAR T Cell this coming week of Christmas. I just had my Hickman line placed today and begin the 3 days if chemotherapy. It looks like the infusion is set for the day after Christmas. I have battled this disease for 21 months. It is such a mixture of gratefulness and grief as my family has stood by my side. I hope to learn from those who have gone before me. I know the Lord is with me every step of the way. Blessings to everyone this Christmas week.
Liked by tanis
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 10761
Joined: Jul 23, 2014
Welcome @cherylbogdan. Well this will certainly be a Christmas like no other as you prepare to get CAR-T cell treatment the day after Christmas. I'm glad you found Connect. Here you will have a chance to connect with and learn from others who have had treatment or been caregivers, such as @grandpabob @grannybrenda @raemark @raemark2010 @annmillercarr @greta_k @valerie912 @kjmahoney and @smokie. You can read more about each of them in this discussion:
– CAR-T Cell Therapy: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
Cheryl, Who will be with you as you receive treatment? I'm sure that you have lots of questions about what to expect. Ask away. What is your biggest concern? What would you like to ask that only a fellow patient might answer?
Hello Cheryl, I offer all the support i can from a distance. So glad to hear you have close family support, I found that to be beneficial in recovering from the side effects of the treatment. Reach out on Mayo Connect at any time.
Thank you. Can I ask how long ago you received your T Cells?
Welcome @cherylbogdan. Well this will certainly be a Christmas like no other as you prepare to get CAR-T cell treatment the day after Christmas. I'm glad you found Connect. Here you will have a chance to connect with and learn from others who have had treatment or been caregivers, such as @grandpabob @grannybrenda @raemark @raemark2010 @annmillercarr @greta_k @valerie912 @kjmahoney and @smokie. You can read more about each of them in this discussion:
– CAR-T Cell Therapy: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
Cheryl, Who will be with you as you receive treatment? I'm sure that you have lots of questions about what to expect. Ask away. What is your biggest concern? What would you like to ask that only a fellow patient might answer?
My husband is with me and is a great support
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Ann
@annmillercarr
@annmillercarr
Posts: 27
Joined: Sep 20, 2018
Thank you. Can I ask how long ago you received your T Cells?
Cheryl–My husband received his T-cells on May 6, 2018. He is still in remission and feeling fine.
Bob, Volunteer Mentor
@grandpabob
@grandpabob
Posts: 155
Joined: Nov 10, 2018
Thank you. Can I ask how long ago you received your T Cells?
Hi, I was infused on August 1, 2018. As another FYI, I ran the gamut of side effects, at least those the were outlined prior to the treatment. Those apparently impact everyone differently I was told. I was 63 years of age which makes a difference as well as I understand. Did your health care provider review those with you?
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Cheryl I had CAR-T. Sending you a ton of love! I survived these tough days by searching for some sense of peace and normalcy and staying connected with my family and getting lots of hugs. I wish you the best. Love Tanis
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smokie
@smokie
@smokie
Posts: 17
Joined: Oct 23, 2018
My son had CAR T infusion in Aug/19 and had the difficult side effects- was so worth it. He is still in remission and feeling great. The staff at the Mayo are so wonderful that words can’t describe them!
Good luck and God bless you this Christmas like none other!
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Cheryl–My husband received his T-cells on May 6, 2018. He is still in remission and feeling fine.
Wow that is wonderful
Hi, I was infused on August 1, 2018. As another FYI, I ran the gamut of side effects, at least those the were outlined prior to the treatment. Those apparently impact everyone differently I was told. I was 63 years of age which makes a difference as well as I understand. Did your health care provider review those with you?
Yes. I am now day 6 and so far no fevers but very fatigued and low blood counts. Still so grateful as I had fevers for almost 120 days in the last 2 years.
Cheryl I had CAR-T. Sending you a ton of love! I survived these tough days by searching for some sense of peace and normalcy and staying connected with my family and getting lots of hugs. I wish you the best. Love Tanis
Thank you. My family has been so good to me. I can't wait until I'm strong enough to help others again.
Liked by Colleen Young, Connect Director
My son had CAR T infusion in Aug/19 and had the difficult side effects- was so worth it. He is still in remission and feeling great. The staff at the Mayo are so wonderful that words can’t describe them!
Good luck and God bless you this Christmas like none other!
Best nurses ever at Mayo
Liked by Colleen Young, Connect Director
Bob, Volunteer Mentor
@grandpabob
@grandpabob
Posts: 155
Joined: Nov 10, 2018
Yes. I am now day 6 and so far no fevers but very fatigued and low blood counts. Still so grateful as I had fevers for almost 120 days in the last 2 years.
@cherylbogdan, I am so glad to hear that you are doing well. You are so fortunate to have that strong family support. My experience to get past the fatigue was to try and get moving as much as possible. Are you in a position to do that?
@grandpabob
Hello Cheryl, I offer all the support i can from a distance. So glad to hear you have close family support, I found that to be beneficial in recovering from the side effects of the treatment. Reach out on Mayo Connect at any time.
Liked by Colleen Young, Connect Director