Connect with others who understand.

Sign up Log in
Resources
About MyLymphomaTeam
Powered By
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Had Car-t Therapy??

A MyLymphomaTeam Member asked a question 💭
Melville, NY
September 13, 2019
•
View reactions
A MyLymphomaTeam Member

My original diagnosis was Late Stage 4 DLBC (Diffuse Large B Cell) Non-Hodgkin's Lymphoma. I was having back pain so my doctor ordered an MRI to see why I had pain. He called me and said I see why you are having lower back pain but that is the least of your issues. He went on to explain it appears you have Lymphoma. Not a clue what he said after that as my mind went blank. Two days later they ran a CAT scan and confirmed it was Lymphoma. Two days later they did a biopsy on a tumor and confirmed the type and details. Two days after that I had my first meeting with an oncologist. My first meeting with him (with my wife) he said I have to tell you what you have is not curable and probably not treatable. He estimated I had two months to live and offered Hospice that day. He did offer chemo as a possible life extension of maybe up to a year. (A real sweetheart of a guy). I chose chemo and went through three different types of chemo over the course of fifteen months. None of them worked and the cancer was spreading and damaging my heart. So, they called me in and told me they were cancelling all treatments as they were not working, but said they were going to get me a referral to the Moffitt Cancer Center in Tampa. Fortunately for me they thought I would be an ideal candidate for an experimental treatment with CAR-T. The short of it is they were able to keep me going long enough to get the CAR-T and it worked and twenty five months later I am still here. CAR-T has since been approved for the treatment of both leukemia and NHL.

February 9, 2021
A MyLymphomaTeam Member

Yes I had every side effect and then some. In Nov it will be 1 1\2 yrs if that PET Scan comes out good. I had alot of issues after infection, pneumonia 2x, excruciating pain still, severe osteoporosis I've had lots of problems but, keep in mind everyone is different I know some people were out of hospital ten days after transplant. It took almost 2 months for me. I'm alive is whats important hope and pray things get better.

September 23, 2019
A MyLymphomaTeam Member

I had Yescarta in 2018 as part of a clinical trial (Zuma 7) at Moffitt Cancer Center in Tampa Florida. I had gone through three iterations of chemo at the VA and none of it worked and was just keeping me alive. They discontinued my treatment and fortunately they were able to get me a referral to Moffitt. I came through the treatment well with no major side effects any tolerated it well. I still have issues with being immune compromised but I can live with that (pun intended). The only issues I am having now are leftovers from the chemo I received not the CAR-T
To date all of my tests are clear. Normally oncologists use the term "in remission " because of the likelihood of it returning, in my case they are saying I'm cured and that it will not be coming back

June 30, 2022
A MyLymphomaTeam Member

I did... Next week I have my 18 month CT appointment and believing it will turn out fine. My biggest side effects were fevers for a few weeks, and then pneumonia. Other than that, I am alive and blessed.

May 22, 2020
A MyLymphomaTeam Member

Yes had car-t-cell transplant also known as YESCARTA

September 13, 2019

Related content

View All

Has Anyone Received CAR T-cell Therapy, Sometimes Called CAR T

A MyLymphomaTeam Member asked a question 💭
Napa, CA

Anyone Here That Has Taken CAR T Therapy For Lymphoma?

A MyLymphomaTeam Member asked a question 💭
Alabama

Has Anyone Done The Car T- Cell Therapy?

A MyLymphomaTeam Member asked a question 💭
Illinois City, IL
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in