I am proabably the least qualified to answer than other members on here. First of all I am very glad your doing so well. Mine also went to the 1000s> I cant say its "normal" but seems okay to me. My Dr was not surprised and was very pleased. He said as my body became accustomed to drug, and my red blood became more stable etc it should come up and it did. I run between 3 and 4s I also have had to take things for my iron (red blood) as well a few times. I basically just wanted to say keep up the good work. I take 400 mg daily. I dont really think I like the sound of stopping the medicine, maybe he could lower your dose a bit. You could ask your Dr how many patients he is treating with Gleevac or how many he has with CML. Jackie > > From: <[EMAIL PROTECTED]> > Date: 2005/03/02 Wed PM 06:53:55 EST > To: <[email protected]> > Subject: [CML] Hello from a new member > > > Hello to all of you, > > I found this group recently while looking for information about CML. I was > diagnosed with Leukemia by an emergency room doctor on 7 January 2005. I > had persistent cold and flu symptoms that my regular doctor had tried to > treat with different antibiotics, but obviously with no success. On my last > visit to my regular doctor, I requested a blood test instead of more > antibiotics - but the doctor said if this last medicine didn't do the trick, > then we would proceed to that. That was on a Tuesday, and by Friday I > thought I was dieing (figuratively), so I went to the ER that evening. > > When I arrived at the hospital I had an elevated temperature, extreme > headache and nasal congestion, profuse sweating, etc. The first doctor that > examined me said that I had the flu, and that they don't admit people for > the flu. She also started to list some over the counter medications that I > could try to help minimize the symptoms - but I insisted that there was more > wrong with me than the flu. She had her supervisor come look at me, and get > a history from me, then decided to do some blood tests. > > A short time later, while laying on a gurney in the hallway, I got the bad > news that my White Blood Cell count was very high, and that it indicated I > had Leukemia. My WBC count at that time was 386,000. (I still don't know > what the units of that measurement are - I guess it means that many white > blood cells in some volume of blood) They also told me that I would be > admitted to the hospital - so they wheeled me into the actual Emergency Room > and started me on an I.V. antibiotic - this must have been better medicine > than the previous antibiotics I had been prescribed by my regular doctor, > because I started feeling better pretty soon. By Saturday during the day, I > actually felt better than I had in a couple of weeks. > > I was in the hospital over the weekend, only getting more of the antibiotic > (I think it was called Levoquin) - because the oncologist at the hospital > would not be there to see me until Monday. By then, after many more blood > tests, the oncologist made a preliminary diagnosis that I had CML. But he > ordered a bone marrow biopsy to be sure. I had the procedure to remove a > bone marrow sample on Tuesday morning, and was released from the hospital > the next day. The oncologist had told me that he would prescribe a new drug > for me - called Gleevec. > > I had an appointment on Thursday with the oncologist, where I was examined, > more blood work, and got my prescription for 600mg daily of Gleevec. I had > also complained of vision problems, so he sent me to an adjacent > Ophthalmology clinic where they discovered some Roth Spots in the back of my > eyes. Roth Spots are small retinal hemorrhages that would normally go > unnoticed - but because of the leukemia, I was more prone to bleeding, and > those Roth Spots grew in size, and did not heal themselves quickly. After > hearing this news, my oncologist insisted that I start on the Gleevec > immediately. He even considered re-admitting me so they could get the > Gleevec for me immediately. I had to order the medicine, because the > pharmacy did not have it - but the nurse was able to get it shipped into the > pharmacy immediately so I could get it the next morning. The only bad thing > was that since I did not have insurance, I had to pay for it out of pocket. > Pretty expensive stuff, as you all know. > > I applied for patient assistance from the drug manufacturer, Novartis. I > was approved to get the Gleevec, and I received my first bottle of pills > before the medicine I bought was exhausted. > > I visited the oncologist weekly, on Tuesdays, after that first appointment. > By 1 February, my WBC count had gone down to 162,000. My doctor said that I > was looking very good, and that he thought it would be OK to see me only > every month. So my first visit since then was yesterday, 1 March. I had > been feeling a little bit tired and achy in my joints for about a week > before going to my appointment. They had also had me on Alopurinol, but > said I didn't need it anymore. But since Gout runs in my family, and I had > even had some Gout attacks, I thought that maybe I did need the Alopurinol. > Yesterday, I even told the doctor I felt like I had a Gout attack coming on. > But he said that my Uric Acid levels looked good from my blood test, and > insisted that I don't need the Alopurinol. I had run out of Alopurinol > about a week ago. > > The real surprise, though, for both me and the doctor was my WBC count. It > was down to 1.4. He seemed a little bit surprised that it was so low, and > of course told me to temporarily discontinue taking the Gleevec. My other > counts - RBC and platelets were good, though. But I will go back next > Tuesday for more blood tests. Hopefully my WBC count will be going up. > Also, he told me to stay away from people - especially anyone who is sick. > And if I start to exhibit any signs of cold or flu, to go immediately to the > ER and tell them what is going on with me. He even suggested I get some > masks to wear, if I have to be around people. Luckily I am working in an > environment where there aren't many people right now. > > Well, that's my story. I am curious if anyone else has had their WBC count > go so low. I am a little bit worried about it. Not only because it went so > low, but because my doctor seemed surprised by it. I wonder if he knows > exactly what he's doing. > > Bye for now, > Pat Sharp > Perris, California > > > > > New! Sign up for local CML support group meetings in your local community at > http://cml.meetup.com > > Apply for Commercial Real Estate loans online and submit your deal to dozens > of hungry lenders in just minutes. Loan programs for all types of business > and commercial real estate. Apply anytime at http://realestatezoo.com > > CML (Chronic Myelogenous Leukemia Support List) > --------------------------------- > Part Of CMLHope.Com > An International Community Of CML Patients > For more information: http://cmlhope.com > > Post Message: [email protected] > Subscribe: [EMAIL PROTECTED] > Unsubscribe: [EMAIL PROTECTED] > Change To No Mail/Web: [EMAIL PROTECTED] > Change To Digest: [EMAIL PROTECTED] > Change To Email: [EMAIL PROTECTED] > List Help: [EMAIL PROTECTED] > CML Group Web Site http://groups.yahoo.com/group/CML > > Yahoo! Groups Links > > > > > > > >
------------------------ Yahoo! Groups Sponsor --------------------~--> Give the gift of life to a sick child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/3iazvD/6WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [email protected] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
