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  • I am a 51 year old female expecting my diagnosis of CLL on Friday.

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    Old 02-25-2008, 08:00 AM   #1
    Carolyn11
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    I am a 51 year old female expecting my diagnosis of CLL on Friday.

    I am a 51 year old female expecting my diagnosis of CLL on Friday. Labs have been a little elevated for several years. Just now referred to oncologist. After doing some thinking, I have been having symptoms over the past 6 mos to 1 year. Right now I am running fever, have a cold, have weird discomfort in my lower back and occasion itching. I too have noticed worsening eye site and some other minor things the past few years. I am terrified. Do not know what to expect. I just want to SURVIVE as I am sure everyone in this position does. I have driven myself crazy reading stuff on the internet since last Thursday when they took my blood sample.

     
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    Old 02-26-2008, 11:21 PM   #2
    wisangel
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    Re: I am a 51 year old female expecting my diagnosis of CLL on Friday.

    Quote:
    Originally Posted by Carolyn11 View Post
    I am a 51 year old female expecting my diagnosis of CLL on Friday. Labs have been a little elevated for several years. Just now referred to oncologist. After doing some thinking, I have been having symptoms over the past 6 mos to 1 year. Right now I am running fever, have a cold, have weird discomfort in my lower back and occasion itching. I too have noticed worsening eye site and some other minor things the past few years. I am terrified. Do not know what to expect. I just want to SURVIVE as I am sure everyone in this position does. I have driven myself crazy reading stuff on the internet since last Thursday when they took my blood sample.
    Hi, Carolyn.

    Please know my thoughts & prayers are with you during this difficult time. I've been traveling down the "CLL highway" for 3 years now, but as the passenger. My husband, the driver, has CLL and was diagnosed on 2/18/05...less than 2 months before our wedding. Up until last month, our lives had been "quiet" in terms of his leukemia.

    Take these for what they're worth, but if I could share 3 pieces of advice, here's what I'd say:

    1) DO NOT GO ALONE TO THE ONCOLOGY APPOINTMENT ON FRIDAY!!

    It doesn't matter if you bring a spouse, child, sibling, close friend, neighbor, coworker, or some stranger you meet in the elevator. Heck, bring a combination. Just DO NOT go alone to this appointment!!! It's bad enough you've been forced to ride on this very emotional & mentally-exhausting roller-coaster. The last thing you need, and regardless of the results, is to find no one there sitting beside you, holding your hand, or giving you kleenex. Also, your mind will be racing with many different thoughts and you'll only hear about every-other-word that comes from the doctor's mouth. Therefore, it's only to your benefit if another pair of eyes & ears gets the same information as you & at the same time. That way, hours later when you're away from the doctor & you're replaying the conversation you "heard", the support person will be able to answer your questions &/or clear up any confusion.

    2) Be proactive in your care, treatment, & conversations with your doctors. Get 2nd, 3rd, or even 4th opinions if you're not 100% comfortable with what you're being told.

    3) Take one day at a time.


    Good luck.....

     
    Old 04-15-2008, 06:35 PM   #3
    kelainek
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    Re: I am a 51 year old female expecting my diagnosis of CLL on Friday.

    Carolyn, I am hoping you are checking this site from time to time. Wisangel gave very good advice!

    I am 53 and newly dx'd CLL on January 11th of this year. Reading on the internet, you have to be very careful as there is a lot of outdated information out there. For example, I was dx'd as Stage IV.......just a few years ago I could have expected to live only 4 years....now the expectancy is 12+ years and growing all the time! I have been active and making decisions with my Onc and have learned quite a lot in just a couple of months time. The more you know about your particular CLL, the more empowered you are and less frightening it is!

    Good luck!

     
    Old 05-08-2008, 04:12 PM   #4
    shirley2502
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    Wink Re: I am a 51 year old female expecting my diagnosis of CLL on Friday.

    I am 65 years old--diagnosed late last year CLL B cell. Stage one asymptomatic except for severe fatigue. The first thing my onocologist said to me was "if you are going to get cancer, this is the one to get" Sound weird??? I thought so at the time. But this is a very slow progressing disease--I met a lady the other day that was dx 30 years ago. They are doing soooo much research, that things change almost from day to day. The B cell is the less agressive , the T cell being the most aggressive of the CLL cancers. I had a bone marrow done a few wks ago--it was not as bad as I anticipated. Mind you, I would not stand in line for another one--ha ha--keep a positive outlook and educate yourself--let me hear from you

    Last edited by mod_007; 05-09-2008 at 12:25 PM. Reason: see posting rules - do not post claims to specialist knowledge or training

     
    Old 05-13-2008, 08:16 AM   #5
    sickofthissite
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    Unhappy Re: I am a 51 year old female expecting my diagnosis of CLL on Friday.

    Quote:
    Originally Posted by shirley2502 View Post
    I am 65 years old--diagnosed late last year CLL B cell. Stage one asymptomatic except for severe fatigue. The first thing my onocologist said to me was "if you are going to get cancer, this is the one to get" Sound weird??? I thought so at the time. But this is a very slow progressing disease--I met a lady the other day that was dx 30 years ago. They are doing soooo much research, that things change almost from day to day. The B cell is the less agressive , the T cell being the most aggressive of the CLL cancers. I had a bone marrow done a few wks ago--it was not as bad as I anticipated. Mind you, I would not stand in line for another one--ha ha--keep a positive outlook and educate yourself--let me hear from you
    I this chronic lymph.leukemia?? My mother was diagnosed in 2005. Only taking iron with no symptoms until Nov.2006 when she began to have severe itching all over her body. The doctors have given her "burst of coritsone" which quiets the itching completely, but they are reluctant to give an rx for long periods of time for worries of any liver damage. But how much more damaging is itching yourself to death (even in sleep) She is now on 10mg prednisone twice daily which hardly helps at all. Her wbc is not too bad at in the mid teens. Has anyone heard of itching with this?? Doctors wanted to give her an 8hr iv of Rituxan, cancer drug which she did not want and then Rx for Leukeran, which a new doctor did not even discuss but this drug "may cause additional cancers" according to package inserts. We are worried that if she starts taking a regular cancer med. that there will be no going back. How is it that some people have few symptoms for 20-30 years?? Any suggestions or anyone's knowlege of this miserable side effect of this CLL would help.-Chloe'08

     
    Old 08-22-2008, 05:28 PM   #6
    CeCeWhit
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    Re: I am a 51 year old female expecting my diagnosis of CLL on Friday.

    I was diagnosed with CLL (B-cell) in March 2007.. still in the "watch & wait" which can be extremely frightening/frustrating because you dont know what to watch or what you waiting for. I realize I'm a little late on this post..but if I can be of some help here goes.

    1) Perception is everything. The glass is either half empty or half full. POSITIVE attitude is a must!!
    2) Knowledge is power! Read what you can... However everything you read isnt "gospel"
    3)Dont get caught up on numbers.... pay more attention to your symptoms and treat them. Ex.. if your fatigued.. take iron. This will help.
    4) Listen to your body; learn your body so that you can communicate to you doctor.
    5) Be proactive. (vitamin & mineral suppliments, iron, diet & excercise) You want to keep your immune system built up.
    6)Hold on to your faith... When nobody else understands.... your faith will get you through.
    7)Elminate the stress.. Dont sweat the small stuff.. (You'd be amazed how much better you will feel)
    8) Most importantly... CLL is not a death sentence.. . but your attitude and how you approach it can be. One day your going to have to fight the battle of your life.. and you want to be ready!!

    The thing about CLL is no two cases are the same, symptoms can be different and the reaction to treatment can also differ. I'm no expert, I can only share with you what I've learned and what works for me. Good Luck and god Bless.

     
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