I just want to alert some of my fellow CML survivors to a possible issue we should all be on the lookout for. Some may remember I said some months back that the CML/Gleevec was masking what I and my doctors thought was pneumonia. Well, after months of tests, ineffective drugs, and finally an open lung biopsy, the diagnosis is confirmed -- Pulmonary Fibrosis. What my oncologists and other docs were yawning about when I complained of coughing and shortness of breath -- all thinking like me that it was side effects of Gleevec treatment, turned out to be much worse.
AND I have been in communication with other CML patients who are not all the way to final diagnosis, but think they may have the same. I have an appointment with onc next week, I am going to discuss whether he will get on board with me to the Heart and Lung Transplant Org, my CML could keep me off the list for a lung transplant. I know some of you are getting tired of me continuing to bring up Vietnam Vets, but one with CML has all the symptoms I have for PF.
Several morals to this story, but the main one is to continue to be your own best advocate. Do not allow the oncs and docs to poo-poo your other symptoms. Press for complete diagnoses ALL the time!
