Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hi, My name is SHY(my initials) living in Cleveland area. Just learned that I have CML last month. Right now, I am on 400mg Gleevec(4 100 mg). I have been doing good with Gleevec with very little side effects like bone pain and tiredness. Alot better than I was on Hydrea. My spleen still tendered and ached sometimes. But it comes and goes. I would like to share my story with you on how I found out I have CML. Sorry for the lengthy story. SHY -------------------------------------------------------------------- On Wednesday, August 9, 2006, I ate my dinner that was leftover from a Chinese restaurant. My stomach was hurt but not too painful. I thought I ate too much. I went to sleep and woke up feeling fine. I went to work on my client's books and did not have any pain in my stomach. Then Thursday evening, Aug 10, I ate my dinner which was the same food from the previous night. After I ate the dinner, I have a very bad left upper abdominal pain. The pain got worse as the night went by. I also had very sharp shoulder pain. I hardly moved or laid down in bed. It was the worst pain I had in my life. Friday morning, Aug 11, I called my doctor to see him. I told him what happened to me. He sent me to have a CT scan in my abdomen and blood test to see what wrong with my body. After having done with the tests in the afternoon, my doctor admitted me to the hospital saying I have an enlarged spleen. I was wonder why my spleen enlarged. I never thought about spleen and don't know what that organ really for. I had no clue how serious my condition was in. But I was afraid what if I got worse when I got home. So I decided to follow my doctor instruction to walk myself into the hospital...... Friday evening, I admitted to the hospital. Everyone in the hospital (doctors and nurses) were very nice and friendly to me. They put me on a wheelchair and transported me to a room. A nurse asked questions about my background and other information. They hooked me up with IV (Saline infusion) and no food at all because the doctor wanted to do more tests on my body. I waited in my room and the nurse took me to have ultrasound imaging on my stomach. And of course, the nurse drew my blood and checked my vital sign (temperature, blood pressure, pulse and so on) every few hours. I was in such a pain that I asked for painkiller to make me feel comfortable. The nurse injected me morphine (the most powerful painkiller). I felt the pain settled for 3 hours and it returned after the morphine wore off. My pain was so severe that I hardly moved or walked. I could not get up and down in my bed without moving very slowly and cautiously. Every movement in my torso was sharp pain stabbed in my stomach. Early Saturday morning (1am) Aug 12, I was transported to a different room in the hospital. It was a new section of the hospital. The nurse said it was just opened in March. Everything was new and very nicely decorated. I felt like I was a special one to be taken to this new floor. I compared that floor to be a penthouse of a hotel. I was excited about it and saying to the nurse this was a beautiful room for me to stay. I stayed in my room by myself since no other patient in the same room with me. I could rest comfortable for my first night in the hospital also my first night in my life since my birth. Saturday morning Aug 12, after a night in a hospital bed with IV hookup. My doctor came to see me and explained what was going on with me. He said my spleen was pretty large. There are 4 reasons to have my spleen so large. 1. Infection, 2. Hormone inbalance, 3. Bone Marrow infection, 4. Bone Marrow Cancer. I think to myself. It can't be cancer. I have been so healthy working out, eating right. It's probably infection or hormone inbalance. Then there were many other doctors came to me and I don't even remember their names. Finally, a doctor specialized in Oncology came into my room. He said my white blood cell count is extremely high compared to normal range. I had 164 vs 4.4-11 of normal range. My spleen is like a filter to filter out the bad blood cells. Since I had so many white blood cells in my body, my spleen got clogged and over worked. That's why my spleen got enlarged and felt the pain. With those 2 symptoms presented - high white blood cells and enlarged spleen. My doctor told me that he thinks I have CML (Chronic Myeloid Leukemia). It is a cancer in the white blood cell/bone marrow. I had no idea about CML. I've never heard of it. I don't think I have cancer. It got to be something else. The doctor said he will do another lab test to confirm the diagnosis. So I stayed few more days in the hospital. Total 5 days. During these 5 days, I had been drawn blood every 12 hours. I had taken pills and pills (Hydrea, anti-inflamatory, potassium supplements). A few days later, my doctor came back with the result to confirm my diagnosis. It is CML. He discharged me on Wednesday, Aug 16. I went back to see him to have bone borrow biopsy last Friday to determine what phase I am in and to final confirm my illness. I don't believe this happened to me. I am young, and healthy. It is too early for me to deal with this disease. With my sister having breast cancer, now I have blood cancer. Like Chinese saying, " Tragedies don't come once. " My life has changed and I see things differently. I have been reading books and websites about Leukemia. It is very serious disease and it happens to people with no apparent reasons. I am the unlucky star. 1 in 100,000 people had CML in age range 50-60. I am only 37. The chance is much slimmer. I believe it is fate. Now, I will go see my oncologist tomorrow to get the result of the bone marrow biopsy. He will put me on a cancer drug called Gleevec. I hope it will work on my body to control the white blood cells. If that drug doesn't work, there is other new drug to try. If that fails, I will need Bone Marrow Transplant which is a very dangerous treatment but it is known to be a cure for this disease. I think it costs alot of money for these medical care. I have medical insurance. I hope it will pay for most of the expenses. But the insurance company will probably raise my premium to a very high level. The drug Gleevec costs $25US a pill. I will take 4 pills a day which totals $3000 a month. Wow! What a pill! I hope insurance will cover that high cost medicine. It is my life medicine. My doctor has not told me how long I am going to live. He said if I respond to Gleevec, I can go back to normal life and live a long time. It is very difficult to ask this question because the answer may not be easy to take. My doctor told me that my liver and kidney are good to take the new drug. I have no virus like hepetitis. I have a healthy body to combat this cancer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hey SHY, fellow Clevelander here. CML definitely doesn't look at age or health in who it picks. I'm 33, never smoked, excercised and been active my whole life and it picked me. I was dx'ed in July, my spleen was HUGE. You aren't alone. Having the Gleevec option is truly a blessing for us. Not to mention the great drugs on the horizon that are even more effective. We have lots of options. I don't plan on going anywhere or changing a thing. Sure there are some discomforts, but you can't let it get you down. The mind and Gleevec are a powerful combo. Check my blog when you get a chance, I've written how I found out... http://strengthtoday.blogspot.com --- In , " cy_butterfly3 " <cy_butterfly3@...> wrote: > > Hi, > > My name is SHY(my initials) living in Cleveland area. Just learned > that I have CML last month. Right now, I am on 400mg Gleevec(4 100 > mg). I have been doing good with Gleevec with very little side > effects like bone pain and tiredness. Alot better than I was on > Hydrea. My spleen still tendered and ached sometimes. But it comes > and goes. I would like to share my story with you on how I found > out I have CML. Sorry for the lengthy story. > > SHY > -------------------------------------------------------------------- > > On Wednesday, August 9, 2006, I ate my dinner that was leftover from > a Chinese restaurant. My stomach was hurt but not too painful. I > thought I ate too much. I went to sleep and woke up feeling fine. > I went to work on my client's books and did not have any pain in my > stomach. Then Thursday evening, Aug 10, I ate my dinner which was > the same food from the previous night. After I ate the dinner, I > have a very bad left upper abdominal pain. The pain got worse as > the night went by. I also had very sharp shoulder pain. I hardly > moved or laid down in bed. It was the worst pain I had in my life. > Friday morning, Aug 11, I called my doctor to see him. I told him > what happened to me. He sent me to have a CT scan in my abdomen and > blood test to see what wrong with my body. After having done with > the tests in the afternoon, my doctor admitted me to the hospital > saying I have an enlarged spleen. I was wonder why my spleen > enlarged. I never thought about spleen and don't know what that > organ really for. I had no clue how serious my condition was in. > But I was afraid what if I got worse when I got home. So I decided > to follow my doctor instruction to walk myself into the > hospital...... > Friday evening, I admitted to the hospital. Everyone in the hospital > (doctors and nurses) were very nice and friendly to me. They put > me on a wheelchair and transported me to a room. A nurse asked > questions about my background and other information. They hooked me > up with IV (Saline infusion) and no food at all because the doctor > wanted to do more tests on my body. I waited in my room and the > nurse took me to have ultrasound imaging on my stomach. And of > course, the nurse drew my blood and checked my vital sign > (temperature, blood pressure, pulse and so on) every few hours. I > was in such a pain that I asked for painkiller to make me feel > comfortable. The nurse injected me morphine (the most powerful > painkiller). I felt the pain settled for 3 hours and it returned > after the morphine wore off. My pain was so severe that I hardly > moved or walked. I could not get up and down in my bed without > moving very slowly and cautiously. Every movement in my torso was > sharp pain stabbed in my stomach. > > Early Saturday morning (1am) Aug 12, I was transported to a > different room in the hospital. It was a new section of the > hospital. The nurse said it was just opened in March. Everything > was new and very nicely decorated. I felt like I was a special one > to be taken to this new floor. I compared that floor to be a > penthouse of a hotel. I was excited about it and saying to the > nurse this was a beautiful room for me to stay. I stayed in my room > by myself since no other patient in the same room with me. I could > rest comfortable for my first night in the hospital also my first > night in my life since my birth. > Saturday morning Aug 12, after a night in a hospital bed with IV > hookup. My doctor came to see me and explained what was going on > with me. He said my spleen was pretty large. There are 4 reasons > to have my spleen so large. 1. Infection, 2. Hormone inbalance, 3. > Bone Marrow infection, 4. Bone Marrow Cancer. I think to myself. > It can't be cancer. I have been so healthy working out, eating > right. It's probably infection or hormone inbalance. Then there > were many other doctors came to me and I don't even remember their > names. Finally, a doctor specialized in Oncology came into my > room. He said my white blood cell count is extremely high compared > to normal range. I had 164 vs 4.4-11 of normal range. My spleen is > like a filter to filter out the bad blood cells. Since I had so > many white blood cells in my body, my spleen got clogged and over > worked. That's why my spleen got enlarged and felt the pain. With > those 2 symptoms presented - high white blood cells and enlarged > spleen. My doctor told me that he thinks I have CML (Chronic > Myeloid Leukemia). It is a cancer in the white blood cell/bone > marrow. I had no idea about CML. I've never heard of it. I don't > think I have cancer. It got to be something else. The doctor said > he will do another lab test to confirm the diagnosis. So I stayed > few more days in the hospital. Total 5 days. During these 5 days, > I had been drawn blood every 12 hours. I had taken pills and pills > (Hydrea, anti-inflamatory, potassium supplements). A few days > later, my doctor came back with the result to confirm my diagnosis. > It is CML. He discharged me on Wednesday, Aug 16. I went back to > see him to have bone borrow biopsy last Friday to determine what > phase I am in and to final confirm my illness. > I don't believe this happened to me. I am young, and healthy. It > is too early for me to deal with this disease. With my sister > having breast cancer, now I have blood cancer. Like Chinese > saying, " Tragedies don't come once. " My life has changed and I see > things differently. I have been reading books and websites about > Leukemia. It is very serious disease and it happens to people with > no apparent reasons. I am the unlucky star. 1 in 100,000 people > had CML in age range 50-60. I am only 37. The chance is much > slimmer. I believe it is fate. > Now, I will go see my oncologist tomorrow to get the result of the > bone marrow biopsy. He will put me on a cancer drug called > Gleevec. I hope it will work on my body to control the white blood > cells. If that drug doesn't work, there is other new drug to try. > If that fails, I will need Bone Marrow Transplant which is a very > dangerous treatment but it is known to be a cure for this disease. > I think it costs alot of money for these medical care. I have > medical insurance. I hope it will pay for most of the expenses. > But the insurance company will probably raise my premium to a very > high level. The drug Gleevec costs $25US a pill. I will take 4 > pills a day which totals $3000 a month. Wow! What a pill! I hope > insurance will cover that high cost medicine. It is my life > medicine. > My doctor has not told me how long I am going to live. He said if I > respond to Gleevec, I can go back to normal life and live a long > time. It is very difficult to ask this question because the answer > may not be easy to take. > My doctor told me that my liver and kidney are good to take the new > drug. I have no virus like hepetitis. I have a healthy body to > combat this cancer. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hello Shy. I was diagnosed August 3, 2005 with CML I had turned 37 a month and a half prior to this. I couldn't believe that I had cancer either, I was too young. In the past year I've had a lot of ups and downs. When I first started taking gleevec for the first 3 weeks I had flu like symptoms about an hour after I would take my 400 mgs. I learned to take motrin with it and I was fine. I lived on motrin for quiet some time for the pain, I just ached all over, especially in my breast bone. I had broken it 19 years ago in a car accident and the pain always seemed to go to that spot (strange). I respoded well to the gleevec, brining my white count down and my huge 22cm spleen almost shrank back to normal size (it took until June 2006 for it to completely go to normal size). By November my FISH showed that 3.4% of my cells were leukemic, (98% at diagnosis) but I became neutropenic so my doc took me on and off the 400 mgs. So by the middle of December I was freaking out because I hadn't been on the med because he was waiting for my white count to rebound. So he put me on 300 mgs a day and my counts started to go up. So in January he put me back on regular dose of 400 mgs and they started to fall, so he had me take 400 mgs every other day. My counts started going up, but so did my platelets. The hospital that I go to hadn't been faxing my weekly labs to Mayo clinic like they were suppose to so out of the blue in February my Mayo doc called me and told me she hadn't seen any result since November, could I fax them to her. Well, I did and she was so freaked out at my platelets being so high that she wanted me to have another bmb so by the time I got this scheduled it was March. My FISH at that time showed 28% so we started the 400 mgs every day, I had another FISH in May and it showed 68% so we started me on 600 mgs for a week to see if I could tolerate the med, I did as far as the neutropenia was concerned so I then started 800 mgs a day by June. At the end of June my FISH showed 26%, July it was 12.4%, August 8.6%, September 3.8%. I'm scheduled again October 4 for my next one. My counts look good except for the neutropenia. I've been averaging a neulasta shot once a month, but the last couple of months my hemoglobin level has been kinda low too, this hasn't happened since before I was first diagnosed, so I don't know what's going on with that, I need to ask my doc. So, as you can see there's been a lot of ups and downs with me. I just finished reading My So-Called Normal Life by Zammett. I wish I could have read that book when I was first diagnosed, maybe I wouldn't have felt so " Crazy " ! Hang in there, things will be fine. It's taken me over a year to feel that way! Sheila dxed 8-05 800mgs gleevec Hi, My name is SHY(my initials) living in Cleveland area. Just learned that I have CML last month. Right now, I am on 400mg Gleevec(4 100 mg). I have been doing good with Gleevec with very little side effects like bone pain and tiredness. Alot better than I was on Hydrea. My spleen still tendered and ached sometimes. But it comes and goes. I would like to share my story with you on how I found out I have CML. Sorry for the lengthy story. SHY ---------------------------------------------------------- On Wednesday, August 9, 2006, I ate my dinner that was leftover from a Chinese restaurant. My stomach was hurt but not too painful. I thought I ate too much. I went to sleep and woke up feeling fine. I went to work on my client's books and did not have any pain in my stomach. Then Thursday evening, Aug 10, I ate my dinner which was the same food from the previous night. After I ate the dinner, I have a very bad left upper abdominal pain. The pain got worse as the night went by. I also had very sharp shoulder pain. I hardly moved or laid down in bed. It was the worst pain I had in my life. Friday morning, Aug 11, I called my doctor to see him. I told him what happened to me. He sent me to have a CT scan in my abdomen and blood test to see what wrong with my body. After having done with the tests in the afternoon, my doctor admitted me to the hospital saying I have an enlarged spleen. I was wonder why my spleen enlarged. I never thought about spleen and don't know what that organ really for. I had no clue how serious my condition was in. But I was afraid what if I got worse when I got home. So I decided to follow my doctor instruction to walk myself into the hospital...... Friday evening, I admitted to the hospital. Everyone in the hospital (doctors and nurses) were very nice and friendly to me. They put me on a wheelchair and transported me to a room. A nurse asked questions about my background and other information. They hooked me up with IV (Saline infusion) and no food at all because the doctor wanted to do more tests on my body. I waited in my room and the nurse took me to have ultrasound imaging on my stomach. And of course, the nurse drew my blood and checked my vital sign (temperature, blood pressure, pulse and so on) every few hours. I was in such a pain that I asked for painkiller to make me feel comfortable. The nurse injected me morphine (the most powerful painkiller). I felt the pain settled for 3 hours and it returned after the morphine wore off. My pain was so severe that I hardly moved or walked. I could not get up and down in my bed without moving very slowly and cautiously. Every movement in my torso was sharp pain stabbed in my stomach. Early Saturday morning (1am) Aug 12, I was transported to a different room in the hospital. It was a new section of the hospital. The nurse said it was just opened in March. Everything was new and very nicely decorated. I felt like I was a special one to be taken to this new floor. I compared that floor to be a penthouse of a hotel. I was excited about it and saying to the nurse this was a beautiful room for me to stay. I stayed in my room by myself since no other patient in the same room with me. I could rest comfortable for my first night in the hospital also my first night in my life since my birth. Saturday morning Aug 12, after a night in a hospital bed with IV hookup. My doctor came to see me and explained what was going on with me. He said my spleen was pretty large. There are 4 reasons to have my spleen so large. 1. Infection, 2. Hormone inbalance, 3. Bone Marrow infection, 4. Bone Marrow Cancer. I think to myself. It can't be cancer. I have been so healthy working out, eating right. It's probably infection or hormone inbalance. Then there were many other doctors came to me and I don't even remember their names. Finally, a doctor specialized in Oncology came into my room. He said my white blood cell count is extremely high compared to normal range. I had 164 vs 4.4-11 of normal range. My spleen is like a filter to filter out the bad blood cells. Since I had so many white blood cells in my body, my spleen got clogged and over worked. That's why my spleen got enlarged and felt the pain. With those 2 symptoms presented - high white blood cells and enlarged spleen. My doctor told me that he thinks I have CML (Chronic Myeloid Leukemia). It is a cancer in the white blood cell/bone marrow. I had no idea about CML. I've never heard of it. I don't think I have cancer. It got to be something else. The doctor said he will do another lab test to confirm the diagnosis. So I stayed few more days in the hospital. Total 5 days. During these 5 days, I had been drawn blood every 12 hours. I had taken pills and pills (Hydrea, anti-inflamatory, potassium supplements). A few days later, my doctor came back with the result to confirm my diagnosis. It is CML. He discharged me on Wednesday, Aug 16. I went back to see him to have bone borrow biopsy last Friday to determine what phase I am in and to final confirm my illness. I don't believe this happened to me. I am young, and healthy. It is too early for me to deal with this disease. With my sister having breast cancer, now I have blood cancer. Like Chinese saying, " Tragedies don't come once. " My life has changed and I see things differently. I have been reading books and websites about Leukemia. It is very serious disease and it happens to people with no apparent reasons. I am the unlucky star. 1 in 100,000 people had CML in age range 50-60. I am only 37. The chance is much slimmer. I believe it is fate. Now, I will go see my oncologist tomorrow to get the result of the bone marrow biopsy. He will put me on a cancer drug called Gleevec. I hope it will work on my body to control the white blood cells. If that drug doesn't work, there is other new drug to try. If that fails, I will need Bone Marrow Transplant which is a very dangerous treatment but it is known to be a cure for this disease. I think it costs alot of money for these medical care. I have medical insurance. I hope it will pay for most of the expenses. But the insurance company will probably raise my premium to a very high level. The drug Gleevec costs $25US a pill. I will take 4 pills a day which totals $3000 a month. Wow! What a pill! I hope insurance will cover that high cost medicine. It is my life medicine. My doctor has not told me how long I am going to live. He said if I respond to Gleevec, I can go back to normal life and live a long time. It is very difficult to ask this question because the answer may not be easy to take. My doctor told me that my liver and kidney are good to take the new drug. I have no virus like hepetitis. I have a healthy body to combat this cancer. --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Hello Shy. My name is and I was DX with CML 3 years ago at the age of 22. I was DX with my blood counts at 343 and was at Stanford hostiptal for 9 days. I first started taking 600mg of Gleevec but then they brought it down to 400mg about 2 years ago. I have to agree with you, with asking questions because it is very difficult when its bad news, but you have to take charge and take care of your self. My doctor once told me that your are your best medicine. If you think your sick and your dying most likely you wont make it. But if you fight hard and say you can beat this thing, it will make life a little bit eaiser. Since I was DX i feel great, I try to not let this, run my life. I just got married this year and I am planning for my future. On the good days I make the best of it and on the bad days I take it easy. I hope this helps and let me know if you have any more questions. -age 25 DX Nov 2003. 400 mg Gleevec --- In , sheila hoffman <sheilamonster13@...> wrote: > > Hello Shy. I was diagnosed August 3, 2005 with CML I had turned 37 a month and a half prior to this. I couldn't believe that I had cancer either, I was too young. In the past year I've had a lot of ups and downs. When I first started taking gleevec for the first 3 weeks I had flu like symptoms about an hour after I would take my 400 mgs. I learned to take motrin with it and I was fine. I lived on motrin for quiet some time for the pain, I just ached all over, especially in my breast bone. I had broken it 19 years ago in a car accident and the pain always seemed to go to that spot (strange). I respoded well to the gleevec, brining my white count down and my huge 22cm spleen almost shrank back to normal size (it took until June 2006 for it to completely go to normal size). By November my FISH showed that 3.4% of my cells were leukemic, (98% at diagnosis) but I became neutropenic so my doc took me on and off the 400 mgs. So by the middle of December I was freaking > out because I hadn't been on the med because he was waiting for my white count to rebound. So he put me on 300 mgs a day and my counts started to go up. So in January he put me back on regular dose of 400 mgs and they started to fall, so he had me take 400 mgs every other day. My counts started going up, but so did my platelets. The hospital that I go to hadn't been faxing my weekly labs to Mayo clinic like they were suppose to so out of the blue in February my Mayo doc called me and told me she hadn't seen any result since November, could I fax them to her. Well, I did and she was so freaked out at my platelets being so high that she wanted me to have another bmb so by the time I got this scheduled it was March. My FISH at that time showed 28% so we started the 400 mgs every day, I had another FISH in May and it showed 68% so we started me on 600 mgs for a week to see if I could tolerate the med, I did as far as the neutropenia was concerned so I then started 800 > mgs a day by June. At the end of June my FISH showed 26%, July it was 12.4%, August 8.6%, September 3.8%. I'm scheduled again October 4 for my next one. My counts look good except for the neutropenia. I've been averaging a neulasta shot once a month, but the last couple of months my hemoglobin level has been kinda low too, this hasn't happened since before I was first diagnosed, so I don't know what's going on with that, I need to ask my doc. So, as you can see there's been a lot of ups and downs with me. I just finished reading My So-Called Normal Life by Zammett. I wish I could have read that book when I was first diagnosed, maybe I wouldn't have felt so " Crazy " ! Hang in there, things will be fine. It's taken me over a year to feel that way! > > Sheila > dxed 8-05 > 800mgs gleevec > > > Hi, > > My name is SHY(my initials) living in Cleveland area. Just learned > that I have CML last month. Right now, I am on 400mg Gleevec(4 100 > mg). I have been doing good with Gleevec with very little side > effects like bone pain and tiredness. Alot better than I was on > Hydrea. My spleen still tendered and ached sometimes. But it comes > and goes. I would like to share my story with you on how I found > out I have CML. Sorry for the lengthy story. > > SHY > ---------------------------------------------------------- > > On Wednesday, August 9, 2006, I ate my dinner that was leftover from > a Chinese restaurant. My stomach was hurt but not too painful. I > thought I ate too much. I went to sleep and woke up feeling fine. > I went to work on my client's books and did not have any pain in my > stomach. Then Thursday evening, Aug 10, I ate my dinner which was > the same food from the previous night. After I ate the dinner, I > have a very bad left upper abdominal pain. The pain got worse as > the night went by. I also had very sharp shoulder pain. I hardly > moved or laid down in bed. It was the worst pain I had in my life. > Friday morning, Aug 11, I called my doctor to see him. I told him > what happened to me. He sent me to have a CT scan in my abdomen and > blood test to see what wrong with my body. After having done with > the tests in the afternoon, my doctor admitted me to the hospital > saying I have an enlarged spleen. I was wonder why my spleen > enlarged. I never thought about spleen and don't know what that > organ really for. I had no clue how serious my condition was in. > But I was afraid what if I got worse when I got home. So I decided > to follow my doctor instruction to walk myself into the > hospital...... > Friday evening, I admitted to the hospital. Everyone in the hospital > (doctors and nurses) were very nice and friendly to me. They put > me on a wheelchair and transported me to a room. A nurse asked > questions about my background and other information. They hooked me > up with IV (Saline infusion) and no food at all because the doctor > wanted to do more tests on my body. I waited in my room and the > nurse took me to have ultrasound imaging on my stomach. And of > course, the nurse drew my blood and checked my vital sign > (temperature, blood pressure, pulse and so on) every few hours. I > was in such a pain that I asked for painkiller to make me feel > comfortable. The nurse injected me morphine (the most powerful > painkiller). I felt the pain settled for 3 hours and it returned > after the morphine wore off. My pain was so severe that I hardly > moved or walked. I could not get up and down in my bed without > moving very slowly and cautiously. Every movement in my torso was > sharp pain stabbed in my stomach. > > Early Saturday morning (1am) Aug 12, I was transported to a > different room in the hospital. It was a new section of the > hospital. The nurse said it was just opened in March. Everything > was new and very nicely decorated. I felt like I was a special one > to be taken to this new floor. I compared that floor to be a > penthouse of a hotel. I was excited about it and saying to the > nurse this was a beautiful room for me to stay. I stayed in my room > by myself since no other patient in the same room with me. I could > rest comfortable for my first night in the hospital also my first > night in my life since my birth. > Saturday morning Aug 12, after a night in a hospital bed with IV > hookup. My doctor came to see me and explained what was going on > with me. He said my spleen was pretty large. There are 4 reasons > to have my spleen so large. 1. Infection, 2. Hormone inbalance, 3. > Bone Marrow infection, 4. Bone Marrow Cancer. I think to myself. > It can't be cancer. I have been so healthy working out, eating > right. It's probably infection or hormone inbalance. Then there > were many other doctors came to me and I don't even remember their > names. Finally, a doctor specialized in Oncology came into my > room. He said my white blood cell count is extremely high compared > to normal range. I had 164 vs 4.4-11 of normal range. My spleen is > like a filter to filter out the bad blood cells. Since I had so > many white blood cells in my body, my spleen got clogged and over > worked. That's why my spleen got enlarged and felt the pain. With > those 2 symptoms presented - high white blood cells and enlarged > spleen. My doctor told me that he thinks I have CML (Chronic > Myeloid Leukemia). It is a cancer in the white blood cell/bone > marrow. I had no idea about CML. I've never heard of it. I don't > think I have cancer. It got to be something else. The doctor said > he will do another lab test to confirm the diagnosis. So I stayed > few more days in the hospital. Total 5 days. During these 5 days, > I had been drawn blood every 12 hours. I had taken pills and pills > (Hydrea, anti-inflamatory, potassium supplements). A few days > later, my doctor came back with the result to confirm my diagnosis. > It is CML. He discharged me on Wednesday, Aug 16. I went back to > see him to have bone borrow biopsy last Friday to determine what > phase I am in and to final confirm my illness. > I don't believe this happened to me. I am young, and healthy. It > is too early for me to deal with this disease. With my sister > having breast cancer, now I have blood cancer. Like Chinese > saying, " Tragedies don't come once. " My life has changed and I see > things differently. I have been reading books and websites about > Leukemia. It is very serious disease and it happens to people with > no apparent reasons. I am the unlucky star. 1 in 100,000 people > had CML in age range 50-60. I am only 37. The chance is much > slimmer. I believe it is fate. > Now, I will go see my oncologist tomorrow to get the result of the > bone marrow biopsy. He will put me on a cancer drug called > Gleevec. I hope it will work on my body to control the white blood > cells. If that drug doesn't work, there is other new drug to try. > If that fails, I will need Bone Marrow Transplant which is a very > dangerous treatment but it is known to be a cure for this disease. > I think it costs alot of money for these medical care. I have > medical insurance. I hope it will pay for most of the expenses. > But the insurance company will probably raise my premium to a very > high level. The drug Gleevec costs $25US a pill. I will take 4 > pills a day which totals $3000 a month. Wow! What a pill! I hope > insurance will cover that high cost medicine. It is my life > medicine. > My doctor has not told me how long I am going to live. He said if I > respond to Gleevec, I can go back to normal life and live a long > time. It is very difficult to ask this question because the answer > may not be easy to take. > My doctor told me that my liver and kidney are good to take the new > drug. I have no virus like hepetitis. I have a healthy body to > combat this cancer. > > > > > > > --------------------------------- > All-new - Fire up a more powerful email and get things done faster. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.