Interviewer: Hi, Thu Thao! I am very happy to talk to you today again. I think since first time I reached out to you, over 1.5 years ago, nothing has changed much wiith your health. Is that correct? How are you doing now?
Yes i’m still healthy and I am very thankful for that !
How long has it been since you had CAR-T-CD19 treatment in Germany?
It has been over 1000 days. The 1000 day mark was on December 17, 2023. [the attached images in gallery, shared with us by Miss Thu Thao herself, are from her 1000th day celebration]
I hear from many patients that they expect to feel a lot better from CAR-T within days, weeks... , this is probably, in my opinion, because of the reports in the news make it look like an overnight miracle. From our previous talk, I remember it wasn't like that for you. So how long it took you to FEEL better? can you say something about that?
In my opinion, getting back on track was harder than the therapy. It took me about three months untill I felt like I was healthy again, and after a year it felt like I never had lupus. I was disappointed at first because my doctors had told me I have cured, but I didn't feel it, only after 3 months I felt it.
Can you share more about your experience with the treatment - hospital stay, side effects you experienced, and infections in the months and years following CAR-T?
My lupus symptoms before the therapy were very severe, and it felt like I could die any minute - from a heart attack or from low blood oxygen. I couldn’t move my body the way I wanted, and I felt helpless every day!
I barely remember the period before and during treeatment as I was so sick from lupus.
I didn’t have any side effects from the therapy and the treatment wasn’t painful or anything but you have to take about 6 weeks off to do the treatment and because of the chemotherapy, I lost all of my hair LOL
In the first year after the therapy I was more prone to infections. I had some smaller infections here and there but after over 2,5 years my immune system is pretty stable and I don’t get sick as of this before.
I am still very thankful that I had the opportunity to be the first person to try the treatment !
What was the worst part of your experience with the treatment?
It was losing my hair.
How dou your labs look now after nearly 3 years?
The lab results are very good.
One of my doctors said that they no longer can prove that I had lupus and the new B cells came back healthy. They are like the cells of a newborn baby.
I have mild IgG deficiency but I am not on any treatment for it (IgG around 5 g/L)
Did you have any other autoantibodies besides anti-dsDNA for lupus? No secondary autoimmune? Are your antibodies now still negative?
I only had systematic lupus erythematodes No secondary autoimmune diseases. Yes, but are now negative. I’m a completely healthy person.
I heard you mentioned in one German interview that you work physically demanding job now, next to your studies?
Yes, I told my parents now i do even heavy lifting at my work, like a completely healthy person.
So just to be clear; you take no treatments for your autoimmune condition?
Absolutely none.
Is it okay if the patients want to know more about your experience, that we contact you again ?
Of course.
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