It has been some time since my latest blog post and I owe an update – to myself (since writing is healing) and everyone else. So, here it goes…
In April, I had my six-month post CART22 follow up (which included a bone marrow biopsy for MRD testing) along with surgery to remove an inflamed lymph node. The lymph node had been bothering me for some time and eventually grew and became very painful. After some testing/imaging, the team and I decided it would be best to surgically remove the entire lymph node. The recovery process from this surgery has taken some time, but I am slowly healing and most of the pain has subsided.
On April 25th I received my MRD test results (for the CART22 trial) as well as the results from the lymph node that was removed just a week prior. Unfortunately, both results came back positive for leukemia.
Now, I suspected it might be a relapse given how my body was feeling – I was hoping for the best, but prepared for the worst. In the weeks following the news, I have been working diligently with my team at UPenn to find a new treatment plan. Lucky for me, the CART22 trial I was in last November has acted as a bridge (for me) to one of the latest and greatest clinical trial protocols – a CD19 and CD22 targeted CAR T therapy.
This dual CAR T therapy has two receptors (versus the single receptor) that recognize and attack cancer. After CAR T therapy, sometimes the modified T cells with this receptor falls off and a relapse will occur. This is the case with both my CART19 (Novartis CTL019 protocol in 2016) and my CART22 (Penn/Novartis protocol in November 2018).
Researchers are working around the clock to determine why the T cells do not persist in some patients as long as we would like. New and advanced CAR T trials offer a great opportunity for researchers and patients – by advancing clinical research and offering a longer, more durable quality of life.
The reality is, CAR T therapy has given me nearly three years of life that I otherwise would not have had. I consider myself very fortunate to have a place in these new trials and I will continue to fight as long as there is HOPE.
The benefits having two receptors targeting two antigens means it is less likely that leukemia will escape two CARs. This should allow me enough time to be in remission – which is what I need in order to make the next decision:
- Proceed to transplant OR,
- Hope that this CAR T is sustaining
The issue right now is:
- You must be in remission to receive a bone marrow transplant.
My dilemma is this:
- Bone marrow transplant will take 1 year minimum, offers terrible side effects, is lengthy in recovery time, and has a 30% success rate.
- Alternatively, CAR T therapy takes less than one month, offers very little side effects, no recovery process (or very little compared to the alternative), and also has a 30% success rate.
Given the facts above (and I have always asked myself this question), do I want to move on to transplant after this latest CAR T therapy?
Ultimately, I need to do far more research before I make a decision. For now, my team at Penn is running a search to find possible matches in the bone marrow donor database to see if I will have potential matches. For now, I must focus on tackling my cancer and getting through this next part of my journey.
Last Friday, my Penn team collected my cells through a process called Apheresis (see photos). It will take around four weeks to modify my cells to express both CARs – CD19 and CD22. Once that process is complete, I will enter the hospital to prepare for my third CAR T cell therapy treatment.
Stay posted for updates!