I went back to the doctor today and my platelet count is back on the rise. Last week it was about 740,000 and now it's around 850,000! The doctor cannot explain why it's back up, the only thing he could say is that it may take a while to get the right level of medication.
The doctor has increased my daily dose of chemo (Hydroxyurea) from 2000mg to 2500mg, that's five 500mg pills per day. I am also still taking one small baby aspirin and one Hemex (Iron) pill per day. We shall see if this dose works but it make me very nervous to have to take such large amount of this drug!
I will go back to the doctors office again next week, for blood work and then I will see the doctor again in two weeks. I will keep everyone posted. Wish me luck, that the medication will work and my blood platelet numbers will start coming down.
I hope everyone is doing well.
- Shayna
January 25, 2011
Anniversary - Almost Eight Years!
I heard this song on the radio the other day and it made me remember that it's almost eight years since my husband and I got married. I realize that this song is about someone who is trying to get up the nerve to ask a girl to marry him but I just think it's so sweet!
If I don't say it enough - "I LOVE YOU" and I am so happy I married you!
- Shayna
If I don't say it enough - "I LOVE YOU" and I am so happy I married you!
- Shayna
January 18, 2011
High Platelet Count Update - Good News
I went to the doctors today and I got good news. =)
After one week on a doubled dose of Hydroxyurea (HU) 2000mg, my platelet count is coming down! My count was 940,000 and now it's ..... 747,000! My platelet count is still very high considering that a normal count should be between 140,000 - 400,000 but I will take a 747,000 platelet count because it means the HU is working!
My white blood cell count, HCT (packed cell volume) & HGB (Hemoglobin) counts were all a little low. I believe these results just mean I am a bit anemic. I am already taking an Iron supplement everyday, I may have to take two each day instead of one.
I didn't get to see the doctor today, I just had to go in for a blood draw. I will get to meet with the doctor next Tuesday and I will post another update.
Also, thankfully, my family and I are finally starting to recover from the Strep and Flu attack that invaded our home. =)
I hope everyone is doing well.
- Shayna
After one week on a doubled dose of Hydroxyurea (HU) 2000mg, my platelet count is coming down! My count was 940,000 and now it's ..... 747,000! My platelet count is still very high considering that a normal count should be between 140,000 - 400,000 but I will take a 747,000 platelet count because it means the HU is working!
My white blood cell count, HCT (packed cell volume) & HGB (Hemoglobin) counts were all a little low. I believe these results just mean I am a bit anemic. I am already taking an Iron supplement everyday, I may have to take two each day instead of one.
I didn't get to see the doctor today, I just had to go in for a blood draw. I will get to meet with the doctor next Tuesday and I will post another update.
Also, thankfully, my family and I are finally starting to recover from the Strep and Flu attack that invaded our home. =)
I hope everyone is doing well.
- Shayna
January 14, 2011
STREP & FLU
The Strep and Flu viruses have invaded our home.
The two kids that were sick with Strep, both got the antibotic shot. One quick stick and they started feeling better and an added bonus was that I didn't have to remember to give them their meds twice a day. =)
The other kids (except our oldest) and I, have the Flu virus. It really sucks, there is no time to get better when you are taking care of the kids and they're coughing all over you.
We have some Jewish Penicillin (Matzo Ball Soup) cooking on the stove right now. Hopefully, everyone will feel better soon.
I hope everyone has a great weekend!
- Shayna
The two kids that were sick with Strep, both got the antibotic shot. One quick stick and they started feeling better and an added bonus was that I didn't have to remember to give them their meds twice a day. =)
The other kids (except our oldest) and I, have the Flu virus. It really sucks, there is no time to get better when you are taking care of the kids and they're coughing all over you.
We have some Jewish Penicillin (Matzo Ball Soup) cooking on the stove right now. Hopefully, everyone will feel better soon.
I hope everyone has a great weekend!
- Shayna
January 12, 2011
High Platelet Count & Bone Marrow Biopsy - Update
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.
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.
January 7, 2011
Hydroxyurea - Essential Thrombocythemia - Home From The Hospital
I went in to the ER on Sunday night and I got to go home Tuesday afternoon.
It turns out the pins and needles sensation that I was experiencing (which was only on the left side of my body) was due to four TIA (mini strokes) that I had due to my high platelet count (984,000)!
I was officially diagnosed with Essential Thrombocythemia (ET) - ( http://mpdfoundation.org/about_essential_thrombocythemia.asp) which is, a rare chronic blood disorder, that some still classify as a form of Cancer. There is no cure and it lasts for the rest of your life!
I was started on the chemo drug Hydroxyurea (HU) - (http://en.wikipedia.org/wiki/Hydroxycarbamide) 500mg twice a day to lower my platelet count, HUMEX because my body has very little Iron and 325mg of aspirin every day.
I have experienced some side effects from all the meds, such as: Fatigue, Dizziness, Loss of Appetite (this will be one way to lose some weight - not exactly the Weight Watchers Plan though), etc!
The HU chemo med says to avoid contact with anyone who may have any infections,etc. Well, all I can say is, I better have some really GREAT doctors because with five kids and four of them in school, someone is always bringing something home. Also, the drug says to handle the meds and the bottle them come in with extreme caution and to always wear gloves, etc. This got me thinking, if I cannot even touch this bottle without gloves, can anyone (i.e. my husband and kids) touch me?
I asked the pharmacist and she said I have to use extreme caution, she scared me to death. I thought, wow, can I give my kids kisses on their cheeks, kisses on their boo-boos? I called the doctors office right away and asked the nurse these questions. She responded with, "You have a appointment on Monday, go a head and ask the doctor then." I told her to "please ask him for me. The doctor said that the amount of HU that passes from me to my family, in those ways, is too small to affect them and that pharmacists often overstate to cover themselves.
Also, the doctors were very to the point about us never getting pregnant again, due to the HU medication. I already put this is in the back of my head because the doctor said if I was diagnosed with ET and had to be put on HU, I could not get pregnant. Putting something in the back of your mind and hearing it in a hospital bed, are two different things! My husband and I are blessed with five beautiful children and we had already made the choice to not have any more children but to have a disease/drug officially make that choice for you was mind blowing. It really was the first time that I thought to myself - I HAVE CANCER!
I sat there for a moment (okay for more than a moment) crying and thinking of all the things that would now be taking over my life and the life of my family: Dr. appts, medications, hospital visits, etc. The doctors say that ET is the best of all the blood disorders and that if you follow doctors orders and take the proper medications, you can live a full life and die of old age. I just can't wrap my head around the fact that my blood has a disease and (though it's rare) my bone marrow could stop working one day!
After I had my pity party, I thought to myself, "Okay Shayna, you have to get it together for the kids and your husband"! I am grateful that I was not diagnosed with Acute Leukemia, I was terrified of that possibility!
The one good thing that has come from all of this, is that it has put a lot of things into perspective!
It really made me realize what is IMPORTANT in my life -
My Health, My Family, and My Connection with G-D!
I can work out everything else in my life, I can fix it, I can make it better.
I have an appointment with my doctor on Monday and hopefully we can get the medications regulated so that I will experience less side effects. I will keep everyone posted.
- Shayna
It turns out the pins and needles sensation that I was experiencing (which was only on the left side of my body) was due to four TIA (mini strokes) that I had due to my high platelet count (984,000)!
I was officially diagnosed with Essential Thrombocythemia (ET) - ( http://mpdfoundation.org/about_essential_thrombocythemia.asp) which is, a rare chronic blood disorder, that some still classify as a form of Cancer. There is no cure and it lasts for the rest of your life!
I was started on the chemo drug Hydroxyurea (HU) - (http://en.wikipedia.org/wiki/Hydroxycarbamide) 500mg twice a day to lower my platelet count, HUMEX because my body has very little Iron and 325mg of aspirin every day.
I have experienced some side effects from all the meds, such as: Fatigue, Dizziness, Loss of Appetite (this will be one way to lose some weight - not exactly the Weight Watchers Plan though), etc!
The HU chemo med says to avoid contact with anyone who may have any infections,etc. Well, all I can say is, I better have some really GREAT doctors because with five kids and four of them in school, someone is always bringing something home. Also, the drug says to handle the meds and the bottle them come in with extreme caution and to always wear gloves, etc. This got me thinking, if I cannot even touch this bottle without gloves, can anyone (i.e. my husband and kids) touch me?
I asked the pharmacist and she said I have to use extreme caution, she scared me to death. I thought, wow, can I give my kids kisses on their cheeks, kisses on their boo-boos? I called the doctors office right away and asked the nurse these questions. She responded with, "You have a appointment on Monday, go a head and ask the doctor then." I told her to "please ask him for me. The doctor said that the amount of HU that passes from me to my family, in those ways, is too small to affect them and that pharmacists often overstate to cover themselves.
Also, the doctors were very to the point about us never getting pregnant again, due to the HU medication. I already put this is in the back of my head because the doctor said if I was diagnosed with ET and had to be put on HU, I could not get pregnant. Putting something in the back of your mind and hearing it in a hospital bed, are two different things! My husband and I are blessed with five beautiful children and we had already made the choice to not have any more children but to have a disease/drug officially make that choice for you was mind blowing. It really was the first time that I thought to myself - I HAVE CANCER!
I sat there for a moment (okay for more than a moment) crying and thinking of all the things that would now be taking over my life and the life of my family: Dr. appts, medications, hospital visits, etc. The doctors say that ET is the best of all the blood disorders and that if you follow doctors orders and take the proper medications, you can live a full life and die of old age. I just can't wrap my head around the fact that my blood has a disease and (though it's rare) my bone marrow could stop working one day!
After I had my pity party, I thought to myself, "Okay Shayna, you have to get it together for the kids and your husband"! I am grateful that I was not diagnosed with Acute Leukemia, I was terrified of that possibility!
The one good thing that has come from all of this, is that it has put a lot of things into perspective!
It really made me realize what is IMPORTANT in my life -
My Health, My Family, and My Connection with G-D!
I can work out everything else in my life, I can fix it, I can make it better.
I have an appointment with my doctor on Monday and hopefully we can get the medications regulated so that I will experience less side effects. I will keep everyone posted.
- Shayna
January 4, 2011
High Platelet Count - Diagnosis Essential Thrombocythemia
I was admitted to the hospital last night due to severe tingling/pins and needles all over the left side of my body, from my toes to the top of my head.
My platelet count was the highest it's been at 985,000.
The did an ultrasound of my liver and spleen last week along with a Bone Marrow Biopsy. The ultrasounds came back normal and they're waiting for one more part of my Bone Marrow test to come back. The Dr. did say that I do not have the JAK2 Gene or two other blood clots genes (that run in my family) they ran tests to look for in my system.
My MRI today in the hospital showed nonspecific foci of signal abnormality scattered throughout the sub cortical white matter. I may have to have another MRI done with contrast. This could explain the pins and needles sensation I have been experiencing. The Neurologist also said that having such a high platelet count could also cause issues to the nerves. My Hem/Onco Dr. said that I have a Myeloproliferative Disorder called
Essential Thrombocythemia ( you can go to this site to learn more about the disorder - http://www.mpdinfo.org/faq/faq_et.html/ )
and he has started me on a chemo drug called Hydroxyurea tonight. He gave me two 500mg pills, he will be in the hospital in the morning to check my blood work and see if they have helped my platelets go down. The Dr. says taking the Hydroxyurea usually works to bring down the platelets but I need to get blood work done once a week and be monitored very carefully in the beginning.
I am worried and scared but I'm hoping that my second MRI is okay and that I get to go home tomorrow because there truly is, No Place Like Home!
Disclaimer: This is my personal account of medical issues that I am dealing with in my life. If you suspect that you have something wrong with your health, you should see a health care professional, ASAP!- Shayna