I went to the doctors on Monday and the news was not great.
My platelet count has not come down at all with the Hydroxyurea (HU). Even though I have only been on the meds for about two weeks, the doctor said my platelet count should've come down, even if by the slightest margin. I went there hoping that we could reduce the meds (I was taking 1000mgs per day) but I left the appointment with the meds doubled to 2000mgs per day. I have been experiencing some side effects; dizziness and fatigue. The doctor also stressed that he would only have me on an aspirin regimen if it were not for the pins and needles sensation that I am still experiencing. The Neurologist said that the sensation is caused by my blood being extra thick like sludge through my veins due to the high platelets. Not everyone with high platelets will experience this thickening of their blood. This thickening of my blood is why the doctor put me on such a high dose of HU. Once my platelet counts come down, he is hoping that I can just be on an aspirin regimen and he will monitor me closely. I was glad that he has a plan to get me off the HU, because being on this drug for the next fifty years does not sound that great.
Also, I got the final results of my Bone Marrow Biopsy.
There was increased megakaryocytes, some appear normal in morphology, but some appear enlarged with hyperlobulated nuclei. Also, there are a few scattered blasts that appear variable in number but overall less than 5% of marrow cellularity. Iron stain shows no definite stainable iron. No ringed sideroblasts are seen. In the blood smear, there is marked thrombocytosis. The white blood cells are normal in number. The red blood cells show anisopoikilocytosis. Some of the platelets are large in size. The findings are not specific , but together with the peripheral marked thrombocytosis, raise the possibility of a chronic myeloproliferative disorder, however the mild reticulin fibrosis is somewhat unusual for ET and other myeloproliferative disorders cannot be excluded. Also, reactive marrow changes with marked reactive peripheral thrombocytosis are in the differential diagnosis. Iron deficiency study is recommended and repeat followup bone marrow biopsy for further evaluation is suggested. In English this means the following: I have Essential Thrombocytosis (ET) but because I have mild scarring on my bone marrow, they are not ruling out the possibility that I could have Myelofibrosis later in life. The doctor said that the scarring is not that bad and that I am fine for now. I will have a repeat biopsy in a year or so.
Myelofibrosis, (http://www.mayoclinic.com/health/myelofibrosis/DS00886) from what I have read, is a lot worse that ET. I have been so scared, confused, and unsure about the future. Some things I have read, from reliable on-line sources, have stated that the average survival of people with Myelofibrosis is about five years although many people survive for decades! Can you guess which part I focused on? All I could do last night was stare at my children, watch my husband while he slept and cry. If one word could sum up my feelings it would be: OVERWHELMED!
I go back to the doctors next week and every week after that for a very long time! I will keep everyone posted. I can't not explain it but this blog is truly an amazing outlet for me, thanks for reading.
I started this blog to post about my family and it has turned into a health blog. I will sprinkle in some family posts every now and then.
Every Day Is Truly A Gift!
- Shayna
I am not a medical professional, this is the story of my health journey. If you're experiencing symptoms or you're not feeling well, please contact a healthcare professional, ASAP.
No comments:
Post a Comment