First of all, please excuse my complete lack of knowledge of this disease as I am just now starting to research and slightly understand what I have.
I am a 23 year old female. I was referred to a hematologist/oncologist back in January as my platelet levels were consistently higher than normal. I was currently pregnant with identical twin boys. The hematologist kind of shrugged it off, but did a few tests anyhow. Sure enough, the DNA test came back with positive results for the ABL-PCR gene mutation-meaning CML. Of course, I was petrified. I have a 3 year old daughter and now 3 month old twins. The doctor was absolutely SHOCKED that he got the results as the levels were so extremely low. He was actually in denial himself and decided he wanted to do a retest after I had my twins. We had the test done again, and oddly enough, my platelet levels are back in the normal range, but I do still have a positive ABL-PCR gene mutation number (and I am slightly anemic). If I recall correctly, it went from a <0.004 in Jan., to a <0.002 just a few weeks ago. My Oncologist isn't really sure if we should treat the CML right now because he says that I am so extremely early in the disease, he doesn't know what to do. We are doing a bone marrow biopsy in the next few weeks, and he is referring me to a specialist at Duke University. I am slightly confused about why my levels would go DOWN over the last 7 months, as is my doctor, but he seems to think that I do in fact have CML, just in an extremely early stage. He says we may not have even caught it for another 5+ years as I probably wouldn't have any kind of symptoms and even in a few years, it may only be due to routine bloodwork that we found it.
I think I have been in denial for a while as I have been so "calm" about the matter explaining it to a few friends and family but it is starting to set in and I am absolutely horrified at the moment. I have three kids and a husband who is active duty military. From my understanding, this is a rare form of Leukemia but "completely treatable and manageable" but I have to be honest, that isn't enough for me to be "calm" about the matter. The oncologist explained that there are side effects of Gleevac and he isn't sure if he wants to "put me through that" quite yet if its ok to wait, which is why he is referring me to the CML specialist at Duke. At first, I agreed, why give me side effects of the drug if it is not needed "yet?" I have since starting thinking about what if the disease progresses quickly and it goes from the Chronic phase to the Accelerated phase between blood tests? Why wait on treatment if its possible to stop the disease from progressing from the very beginning?
I guess I am just looking for support. My husband is in denial, I believe, and he doesn't really understand what is going on. He is there to support me in whatever I need, but since the doctor is so "positive" about the matter, my husband doesn't feel the need to worry. I haven't been "worried" yet either, until a few days ago when all of a sudden I have been terrified of this disease. What can any of you tell me about CML? My results are so low, from your experience, does starting on Gleevac sound like a good idea or should we wait to see when/if my numbers go up? Those of you on Gleevac, what are the side effects? I know of fatigue, swelling, water retention, and so forth. I have been told that Gleevac works in 90% of patience, and if it does not work, there are other drugs that most likely will. Will I be able to live a normal, active life on Gleevac? I am getting a bone marrow biopsy done soon, what should I expect with that? I am not really even sure what they are looking for from the biopsy, can anyone explain that?
I know, lots of questions, and I intend to talk to the specialist, but that could be another month or two from now and I am terrified sitting here typing this. Advice, support, encouragement, whatever you can give me us helpful!!!