“I did relapse. My blood was monitored every 2 months. After 7 years in complete remission, there were detectable HCL cells in the blood. As their counts climbed, the normal blood count went lower. In 2017, I had some infections and I was treated with 4 times Rituximab only, since they were afraid to put me on 2-CDA. At that point my bone marrow was 20% HCL. I responded and all blood counts went to normal, but there were still HCL found in the blood. Last summer I needed treatment again. This time they treated me with a 5-day subcutaneous course with 2-CDA, followed by 8 weekly doses of Rituximab. They put me on Valtrex and Pentamidine inhalation after the 2-CDA. I need to take the Valtrex for a period of 6 months and the inhalation of Pentamidine every month for a period of 12 months. Blood testing after 3 months resulted in CR and no sign of any HCL in the blood.”

“I have relapsed 3 times now. I was treated the second and third times with cladribine. Most recently, I was treated with moxetumomab pasudotox and am currently in remission. The end of my remissions was determined from quarterly blood tests. When my neutrophils dropped below 1.0 and platelets dropped below 100K, treatment was planned. I have never felt ill from the hairy cell leukemia. No one really knows if my DVT was a result of having HCL for sure, but the doctors are suspicious that they are related. I have not had additional DVT issues since the first time. I used to take Warfarin regularly to prevent future DVTs, but have switched to Xarelto now. I generally do not get a lot of colds, have never had pneumonia, and can’t remember the last time I had the flu. Although my neutrophils are always on the low side, even when I’m in remission, it doesn’t seem to cause me a lot of trouble with my general health.

I did have a bad experience on my last treatment with moxetumomab pasudotox. I came down with capillary leak syndrome after just 2 infusions and had to stop treatment. Despite some side effects, the moxe did fix my blood counts very nicely and I’m in remission again with the highest counts I’ve had in several years. Not bad for getting just 2 of a scheduled 18 infusions!”

“Six years ago, I had the 24/7 cladribine treatment with no side effects whatsoever. I was fine until my platelets started dropping. I had cladribine once again, this time for 2 hours each day for 5 days. On the sixth day, I had a fever of 103.7 and ended in the hospital for six days. I am fine now, however this last treatment left 10% hairy cells. So I had 8 weeks of Rituximab.”