I was diagnosed in November 2025 with Chronic myeloid leukaemia ('CML') with the P190 oncogene which from my understanding is a very rare and aggressive disease. I was treating with the same oncologist since 2010 for factor 5 Leiden.I trusted this doctor to take care of me. My WBCs and Platelets showed increased numbers beginning in May of 2023 but I had no symptoms. I then started to develope clots while on Xeralto. He stated he would look for cancer due to clotting on a thinner. He did some tests and a bone biopsy in his office and said everything was fine changed my medication and did some tests but stated everything was good and the persistent increased WBCs and Platelets must just be my normal. In November 2025 my PCP insisted I go for a second opinion due to suffering extreme fatigue and aching in my arms and hips. All of which my oncologist said was due to lack of exercise. The new oncologist I saw ran a simple PCR and I was diagnosed with Chronic myeloid leukaemia ('CML') . I am now treating but suffering severe fatigue with nausea vomiting and diarrhea.
Hi @Betty, welcome to the Forum and thank you for sharing your story - I’m sure the road to diagnosis you experienced feels quite familiar to a number of community members (myself included, though I had Hodgkins Lymphoma).
It’s good to hear you’re now being treated, even though the fatigue, nausea, and everything else you’re describing sounds tough. I hope your current team is keeping a close eye on how you’re managing?
You might find it useful to look at some of the related threads the forum has surfaced alongside your post as there are others here with Chronic myeloid leukaemia who’ve shared their own journeys, and connecting with people who understand can make a real difference. You can scroll down to the ‘Related’ feature at the bottom of this thread to find similar ones, or just use the Forum’s search function.
Am I right in thinking you’re based in the US given you’re referring to PCP? If so, you might want to say hello to our fellow US-based Forum Support volunteer, @Duncan. Blood Cancer United may also be worth knowing about - they offer support specifically for people in the US living with blood cancer.
Keep posting whenever you need to, you’re very welcome here.