This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.
My CLL journey began in August of 2010. My husband and I just got back from a vacation and I noticed red spots on my feet. I went to a dermatologist and he said, “just to be safe, let’s do some labs”. That afternoon, I received a call stating I had chronic lymphocytic leukemia, CLL. I panicked, cried, and couldn’t sleep for nights. I had the aggressive kind. My white blood cells (WBCs) went up from 44K per cubic millimeter in September, 100K in January 2011, up to 300K by June 2011. I had no deletions on the FISH test, Fluorescence In Situ Hybridization, but markers CD38 and Zap 70 were positive and IgVH unmutated. The latter two were not good, indicating poor prognosis.
I changed my hematologist to Dr. Kipps at the Moores Cancer Center, UC San Diego. I chose an option to see a naturopathic doctor, as well as to hopefully cure myself. Well, that didn’t work. So, Dr. Kipps at the time had only one trial going for navitoclax but I wasn’t ready to take the plunge into the “clinical trial” lab rat group. And I didn’t have the resources that I do now. So, I decided on fludarabine, cyclophosphamide and rituximab (FCR) for my initial treatment. I could feel my lymph nodes growing, my WBC count was up towards 300K and lymphocytes were very high as well. I had to have apheresis twice to remove some of the WBCs to make it safer on my kidneys during treatment with FCR. I was treated with FCR for 3 months and got into a good remission, a complete response (CR). This lasted for approximately 2 years and my markers then changed to 17p and TP53, again pointing to a bad prognosis.
I went into a CC-292 trial, a BTK inhibitor similar to ibrutinib, but not as strong (the ibrutinib trial was not available at UCSD at the time). It worked for about 8 months, then I requested ibrutinib. Ibrutinib lasted about a year and a half too, and I became very sick and almost died. But by that time venetoclax was on the scene and basically saved my life!
Venetoclax lasted a year and a half through the fall of 2017. Then, I found a clinical trial at MD Anderson called CAR-NK. They use an umbilical cord blood transplant to release NK (natural killer cells). So, my husband and I traveled to MD Anderson in Houston for this cutting-edge clinical trial. (6 weeks there). I had high hopes as I was patient # 6 and I felt like this was my miracle. After a month, I was MRD-neg and PET scan was clean except for one stubborn lymph node under my arm, which I choose to have removed. The lymph node was full of CLL, with TP53 mutation, but not Richter’s. I started the trial in February 2018 and was cancer-free until September of 2018. Then everything broke loose. I got really sick with high fevers, pain, and also found out that the CLL had gone into my bones, which is extremely rare. I had cracked ribs and large bumps on my scalp. I was in the hospital for 40 days from September – November 2018, as I contracted other infections as well. One huge bump on my head was radiated.
So, what next? If I choose to have a bone marrow transplant (BMT), I needed to be in a better remission. I was not eligible for any commercial CAR-T trials due to having gone through the CAR-NK, as both attack CD19. Dr. Kipps and Dr. Choi suggested I go to City of Hope east of LA for they have developed their own CAR-T and I would be eligible. So, after all the testing, it is now May 2019 and I made it into the CAR-T trial. I received my cells on May 8th. I remember Dr. Koffman saying “wish me ill,” when he went through his CAR-T therapy. So here I am bracing myself for the storm. I’ve been having low-grade fevers at night that have been going up, so that’s good. It means the T cells are working. So please wish me ill. Currently going into this trial, I have no CLL in my blood or bone marrow. I’m a very special case since it moved into my bones – lucky me! In 30 days, they will do a PET scan to see where we’re at, but I’m hoping and praying it works to get that CLL out of my bones.
What next if this doesn’t work? I may try ROR1 at UCSD, but they say my CLL is so complex that it keeps coming back. They are finding me a BMT donor behind the scenes. I would rather do the “clinical trial hop” rather than getting a BMT, but neither they nor I can take it off the table.
I was diagnosed at age 54, (61 now). I’m in good physical shape, but whoa what a journey (and not so much fun). I will say the blessings to having this disease have been meeting wonderful people and making new friends. Also, I have a heavy reliance on GOD. There’s always a silver lining in life’s bumps for sure.
So, to be continued…..Chris Mantei
Originally published in The CLL Tribune Q2 2019.