Hello,
My mom (age 65) was diagnosed with CML a couple months ago in accelerated phase. The doctor started my mom on hydroxyurea first while waiting for the approval of Sprycel/dasatinib. When she started Sprycel 100 mg her WBCs were around 22.7 (1000/mm3) and started around June 2019. For the first 2 weeks, she had little side effects besides fatigue. Her white blood cells did start getting better as it eventually started to reduce around normal range 4 (1000/mm3). However, around the end of the 2nd week, she started to have a fever and was taken to the emergency room. Her fever remained high and had to stay in the hospital for 1 week as the team did testing for any signs of infection. They found my mom had some fluid retention in her lungs and identified it to be the cause of her fevers and the doctor took her off Sprycel. After stopping the medication, my mom's fever reduced and she got better. We discussed with her oncologist and the oncologist said to try a different medication, Tasigna/nilotinib and had her back on hydroxyurea while we waited for nilotinib to be approved again. Her WBCs were fluctuating between 30 to 60 (1000/mm3).
This time, while taking hydroxyurea, her WBCs remained the same around 60 (1000/mm3). When she started the nilotiniib, she had joint/bone and muscle pain right away and continued to do so for the first 5 days. The pain was unbearable for her and eventually she developed fever again and had to go to the ER and stayed in the hospital for 2 weeks. They performed the same procedures to test for infection and eventually she stopped the nilotinib and she got better. Later after discussing with the doctor, we agreed to resume Sprycel at a lower dose, 50 mg because it worked better and her fluid retention can hopefully be under control. However, eventually she developed high fevers again, fatigue, and started coughing up brown phlegm. The Sprycel 50 mg also stopped being effective and her WBCs count went up. She took prednisone to help her fevers but her WBCs suddenly went up from 60 to 152 (1000/mm3). This is around July 15, 2019.
Recently, the doctor had her start on Ponatinib just last week (July 23rd) with a WBC count of 200 (1000/mm3). She suddenly had vaginal bleeding 1 hr after starting Ponatinib and fever the night of. The day before, she just had a port placement surgery as well. On Wednesday (July 24th), we took her to emergency due to fever and abnormal vaginal bleeding. The ER found she had a bad infection due to her port and had her port removed (this is one of the reasons for her fever). After her port was removed, she still had slight vaginal bleeding and fevers. Right now her vaginal bleeding stopped but her fevers are still consistent. She is feeling extremely weak now and have trouble moving on her own. The doctors took her off Ponatinib and is now having her on prednisone and hydroxurea instead. Her current WBC count is 110 (1000/mm3) and her fever has reduced.
Right now, the doctor says to have her on prednisone and hydroxyurea for now to get her feeling better and may start on another medication, bosutinib. However, he says that bosutinib may cause the same reactions.
At this point, I am worried there is no other options as she is worried and does not want to do stem cell transplant because her body is too weak now and even the doctor said her blood levels are not stable enough now to do a transplant anyway.
I would like some advice and any input and information. Has anyone have similar issues with these TKIs and what are your experiences with AP-CML?
Thank you so much