HI Wendy and welcome to this list.
We are a group of CML's that will see you through all your trials.
Let me tell you about my experience after first being dx.
I am 67 and was dx 1/27/04; have been on Gleevec since 2/04.
I was never sick and had never taken any pills; I always said I would not take all those pills just because I was getting older.
I went to my primary care Dr for a checkup and he suggested a cbc; I told him I didn't think I needed it but he insisted.  Thanks heavens he did; I had been being unusually tired and had just recently been on an airplane trip to OH.
I gave blood regularly and had no complaints that my blood was bad.
My Dr called me up the next day after the cbc and told me my counts were really high and that I needed to see a blood specialist; now that didn't set to well to me because I stay away from Drs as much as possible. but he insisted so off I went.
It seems my platelets were in the millions and my WBC high also, so the onc told me I need to have a BMT; I wanted to run right out of his office but instead said OK.
He said let's do it right now and he did.  He was very good at this test and I had little pain then.  Then I get the bigggggggggg news; he said I had to go right in the hospital for blood apheresis.  I guess I was sicker that I thought; the hospital was right across the street from his office so within minutes; he had me on my way to the hospital.
I didn't know what to expect; just that I was going to have my blood cleaned.
They brought me these hugeeeeeeeee pills; and since I never took anything without seeing what it was, I asked the nurse what they were; she told me they were Hydrea; I told her to see what the side effects were and etc; not knowing I would be taking a lot of pills from then on; it seems when you are in the hospital you just take what they bring.
I was then taken to a room where they inserted a catheter in my neck; I remember thinking after it was done; that wasn't so bad; I thought it was all over. Ha Ha.
It had just begun; a team brought this large machine in and started hooking me up to it.
It took my blood through the machine and took out all the bad white cells and platelets.
This took about 2-3 hours each time.
The nurse showed me the large amount of white cells coming out of my blood.
I had about 4 of these cleanings and my blood count was good so the Dr sent me home; but alas, after a few days, my platelets were back in the millions.  I had to have my blood checked weekly and the Dr was going to put me back in the hospital if they didn't come down.  I packed my bag each time I went to his office.  The platelets were staying high so I read up on a drug called Agrylyn that was suppose to bring the platelets down; the Dr already had in his mind to give me this drug, so I started on it right away. I didn't have my Gleevec at this time so I took Hydrea and Agrylyn plus aspirin.  Then my blood counts dropped toooooooooooo low.  At this time, I was sick, running a fever daily and etc.
Then the Dr wanted me to do a blood transfusion but I refused this; I knew the counts would come back up ifIt took my blood through the machine and took out all the bad white cells and platelets.
This took about 2-3 hours each time.
The nurse showed me the large amount of white cells coming out of my blood.
I had about 4 of these cleanings and my blood count was good so the Dr sent me home; but alas, after a few days, my platelets were back in the millions.  I had to have my blood checked weekly and the Dr was going to put me back in the hospital if they didn't come down.  I packed my bag each time I went to his office.  The platelets were staying high so I read up on a drug called Agrylyn that was suppose to bring the platelets down; the Dr already had in his mind to give me this drug, so I started on it right away. I didn't have my Gleevec at this time so I took Hydrea and Agrylyn plus aspirin.  Then my blood counts dropped toooooooooooo low.  At this time, I was sick, running a fever daily and etc.
Then the Dr wanted me to do a blood transfusion but I refused this; I knew the counts would come back up if I went off the meds. and I was right; they went right back up.
I then went on Gleevec and within a month, everything was back to normal.
I have been on Gleevec for a year and a half now; have some of the side effects, but am living a faily normal life; so hang in there and come here for support.
We are here for you.
Blessings,
Jeanie<3
 
In a message dated 7/16/2005 8:41:17 AM Eastern Daylight Time, [EMAIL PROTECTED] writes:
Hello,
 
My name is Wendy and I was diagnosed with CML this past Wednesday.  This is turned out to be more difficult for me to deal with than I thought it would be.  I knew there was the possibility of it while I was going through all the tests but to be told you have cancer is devastating.  I have been reading up on it and the treatment of Gleevec but I don't really have any idea what to expect.  I also have a mass the found during a routine mammogram so I have to have that biopsied next week to determine what it is before they can start the Gleevec.  The thoughts of having two separate types of cancer is beyond devastating.  Any advice any of you could give me would be greatly appreciated.  What to look for, what to expect, etc.  My family is supportive but they don't know what it's like to have cancer as none of them have it.  Please help.
 
Thank you so very much.
 
Wendy


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