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CLL diagnosed almost a year ago Watch and wait

Mz. Fabulousity's picture
Mz. Fabulousity
Posts: 7
Joined: Nov 2010

Hi

I was diagnosed about a year ago. I am now 40 and am a mommy to 3 little boys. I was scared out of mind last October when I came on this website. I got a lot of positive feedback from everyone here.
I am doing well and on Watch and Wait/ See Active Watch ( i prefer the later). I have swollen lymph nodes on my neck and under arms. My blood work is good and I am soo happy.
I am living my life the best possible. I do get discouraged and cry some of the time but for the most part I have fun, think positive and pray everyday day I may be given time to see my little boys grow up. I think I will be able to do it! I don;t dwell on it and continue living my new normal.

I am giving back by walking in the Light the Night - Leukemia Lymphoma Association walk in my area. I don;t think I am totally ready to go but i will make an effort.

If I am able to encourage you in any way please let me know. I want to Pay it Forward by encouraging/praying for anyone. I have been there so I totally understand.
I would also appreciate any encouraging words you might have for me.

Be encouraged!
<3

Ronnie2751's picture
Ronnie2751
Posts: 16
Joined: Sep 2011

I was diagnosed three years ago with stage 0 and have been living with it ever since. I have blpod work every three months and i have got used to it.
I hate statistics, but in our cases they are over 90% in our favor, so i say go out there and live your life to the full and enjoy every moment.
Wishing you all the best

Ronnie

Mz. Fabulousity's picture
Mz. Fabulousity
Posts: 7
Joined: Nov 2010

Thank u Ronnie for your encouraging words. I appreciate them.
Wishing U the best too

gonegolfing
Posts: 2
Joined: Oct 2011

I was diagnosed with cll 2 years ago white blood cells at 51000 still watching and waiting---wishing you good luck.

Ronnie2751's picture
Ronnie2751
Posts: 16
Joined: Sep 2011
Mz. Fabulousity's picture
Mz. Fabulousity
Posts: 7
Joined: Nov 2010

Yes , they keep posting . There are 3 or 4 posts. LOL
Thank u for ur words. I am living w this in the back of mind because I feel that this is the only way I can deal with it. I am taking a step forward and walking in the Light the Night walk and raising funds for the Leukemia& Lymphoma Society.

Ronnie2751's picture
Ronnie2751
Posts: 16
Joined: Sep 2011

For some weird reason my post appered four times. Wish i could just delete them

Ronnie2751's picture
Ronnie2751
Posts: 16
Joined: Sep 2011
Paul Edward
Posts: 1
Joined: Oct 2011

I was diagnosed with CLL July 11th of this year. I am in stage 3. I had a hemoglobin level of 3 and white cells at a count of 495,000. I am in a clinical trial now and my symptoms are much more manageable. My emotions have been going like a roller coaster and have been hard to manage. I hope this site can allow me to talk more about them. I will also try and give others encouragement.

Momeris
Posts: 1
Joined: Nov 2011

I was diagnosed with cll yesterday. Dr thinks I am in stage 0. Have CAT scan on Nov 16 and appt with Dr on Dec 1. I am scared. I am 59. I have no symptoms that I know of. My WBC was 54,000.

Mz. Fabulousity's picture
Mz. Fabulousity
Posts: 7
Joined: Nov 2010

Do not be scared. Be as positive as possible. Live your life as normal as possible.
Continue to do what u always do.

It's been a year for me and I was scared to death. I am only 40 and I was devastated.

I decided to give myself time a pity party and then move on.

My biggest concern was leaving my children. I tried to find as much encouraging help as possible from the Leukemia Lymhoma Society. I wanted to speak w folks on watch and wait to see how they managed.

It is a mental game you must overcome. Be encouraged.

jacksrap
Posts: 5
Joined: Dec 2011

I have had SLL/CLL for almost four years now. I am in stage 4 because my platelet count is very low at 60. I have been on watch and wait all this time, and feel great. Started out as SLL, but when diagnosed Dec 2010, it had already spread to my blood (CLL).

May be no cure, but certainly liveable cancer. Looking forward to many more years, Lord willing. You will most likely see your boys children.

I volunteer for LLS also, a great place to learn, and help.

Mz. Fabulousity's picture
Mz. Fabulousity
Posts: 7
Joined: Nov 2010

Thank u for your encouraging words. I truly appreciate it u sharing w me how long u have been on Watch and wait. I am looking forward to being w my little boys for a very long time.

Thanks

waltzing_matilda
Posts: 1
Joined: May 2012

I am so glad to find this website. It is wonderful to be able to share feelings, fears and worries with others in the same situation. My lymphocyte count started climbing 9 years ago, and I've been "watching and waiting" ever since. LIke you, I do find myself overwhelmed at times (usually after my most recent blood test, when I see that the counts keep going up). But mostly, I just try to live my life to the fullest. It's been several months since you posted, so I hope that this note finds you well. I have 3 children myself, so I know how you must worry about seeing them grow up.

Best wishes to you.

dcpchief's picture
dcpchief
Posts: 2
Joined: Jun 2012

I have just been diagnosed with CLL. I am 64 yrs old and in otherwise pretty good health. I have been looking at different web sites trying to learn a bit more. It was like a punch in the stomach when we got the news but am staged at 0. My counts have been going up gradually for about 4-5 years and the new PA at my local VA clinic thought is was time to look further. I was evaluated at VA Augusta & Medical College of Georgia so I am comfortable with the Oncologists. Had a body scan 2 wks ago and nothing abnormal. This site has given me some good info from others - so thank you all! I am scheduled for an Agent Orange eval next week. Has anyone else on this forum had their CLL attributed to AO exposeure, and if so what has your experience been with VA ratings?

One other question please - what advice have you received regarding high stress employment and it's possible effects on this condition. Thanks again, and God Bless!

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