Is there a reason nobody replies on this board? I really need some advice. I really need some support right now. I just hope there is someone out there.
I feel your frustration, as my recent post here has been read by 21 readers; but answered by none. If you had a back problem, you'd have no trouble getting a lot of feedback on that bulletin board. Those guys over there are like a big family, that chats back and forth regularly.
To answer your concerns...My wife has CLL (read my post from a few days ago, if you haven't already). She has been seeing a hemotologist regularly for the past six years, after our family doctor's suspicions concerning her high white count. The hemotologist first performed a bone marrow biopsy, which confirmed the leukemia. Fortunately it is "chronic" or slow progressing. Unfortunately there is no cure for this type.
The biopsy itself was a simple procedure, done in day surgery. They insert a rather large needle device into both hip bones and draw out a piece of bone and some marrow. I think my wife had one stitch in each entry point. She came home a couple of hours after the procedure. Her bottom was tender for a few days.
I believe we had an appointment to visit that doctor, a few days after the biopsy was taken. He explained that the suspicions were confirmed, explained all he could; and answered all of our questions. Our initial reaction, of course, was shock and disbelief. But now...six years later, we rarely even think about it. The checkups are routine; and take all of five minutes. The blood is drawn, put into the computer and results are discussed for a couple of minutes.
I don't know if I've helped you at all. I will continue to check this board, so please do come back and let us know what you find out. Or just come back and talk. Good Luck!
Thank you, thank you, thank you. I check every day to see if anyone has answered me yet, you are the first. Did your wife have any other symptoms when this all started? Do you know what her WBC was that made the doctors suspicious? Mine is elevated to 14.5 right now, it was at 14.1 and stable, but over the summer it was over 20. I also had Mono, could this have any effect? I have so many questions, and I know I will be grilling the doctor, but I just want to talk to someone who has been through this. I applaud you, cancer is not easy to deal with. And I thank you so much for listening to me.
Maybe we'll just keep this board going for a while, until others decide to join in.
As is normal with CLL, my wife's was discovered during a routine physical exam. She hadn't had any symptoms. I don't believe she's ever had mono either. During that initial physical exam, her white count was around 12.4 (which is really 12,400). The "normal range" is between 4 and 10 (or 4000-10000). When she got rechecked 90 days later, her count had climbed to 16 (16000). Over the past six years, since being diagnosed, her white count has climbed to 57.3 (or 57300). Every successive blood test results in higher readings. Her reading has never dropped. With her red count being at the bottom of the "normal" range (and ocassionally dipping below), she is sometime anemic. Even then, she doesn't really display the typical signs of being tired "all of the time". She is generally wide awake and raring to go throughout the day. But if she has a chance to sit down by 7 or 8 o'clock in the evening, she'll fall fast asleep.
What has me concerned; and prompted my first post on this board, is her recent body aches. She is sore from her feet to her neck. And I mean really sore. There doesn't seem to be any good explanation for it. We eat healthy. She walks and exercises on a regular basis. We don't smoke. Our alcoholic consumption consists of maybe a glass of wine per week on average. She is not one to complain about the little things. So when she wakes up in the morning and can barely pull herself out of bed, I know she is hurting. Or when I see her struggle to get up a flight of stairs, I believe something is wrong. But, as I said...her hemotologist doesn't really respond or seem very concerned about it. So, my wife just takes asperin (per his suggestion) and deals with it.
Be sure to write down any and all questions that you want to ask the doctor. Thats what we did. It really helped with the initial impact of the whole thing.
I'm sorry to hear about your wife. Have you guys considered a second opinion? From what I've read, the pain is common with CLL, but I don't know to what severty. The only thing I can suggest is to find another hemotologist, and see what he says.
I do plan on writing everything down. I guess I'm just really scared. I'm just waiting to exhale. If it's cancer, I can deal with it, but not knowing what it is, is just really scary. I get anemic very often, and the doctor has mentioned it to me before. I just don't know why my WBC is so high. I guess I'll just have to wait and find out.
How does your wife deal with it? I know you said you guys don't even think about it anymore. I'm really more concerned about my family than me. I know I can handle anything they throw at me, but I have two small children, and parents who will break down. I don't know.
Thank you for keeping in touch. Keep me posted on your wife, I hope she is feeling better. I'll let you know how everything turns out.
Does anyone actually read these? 
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