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46 Female Just Diagnosed with Chronic Lymphocytic Leukemia

Hi, I'm Lillian I C.

Hello. I’m so new here, and so scared too. I’m waiting on blood test to come back to confirm the doctors diagnosis. My lymphocytes are at 63% now I believe. Does anyone know the life expectancy of this and anywhere that I can get more in depth information on this cancer?

  • Post #1
  • Tue Aug 12, 2014
Hi, I'm Dita

My dad (who is 84 yrs old) has had chronic lymphocytic leukemia since 1996. All these years his doctor just monitors his blood count. He has never felt bad. He has also had heart issues long before the CLL diagnosis and his doctor said his heart will kill him before CLL.

  • Post #2
  • Fri Aug 15, 2014
Hi, I'm Grace J H.

Hi I have had CLL since 2003. I was diagnosed at MD Anderson Hospital in Houston. I would love to talk with you if it would help or encourage you. I am 77 years old. I did not have any kind of treatment for years. For the past few years, I get a monthly treatment of IVIG and I do great. I feel wonderful. My name is Grace

  • Post #3
  • Sat Aug 16, 2014
It will all work out.

I was formally diagnosed in 2008, but I have had high white blood count numbers since 2003. My numbers started going up in 2011—especially the absolute lymphocyte count , and I had FCR treatment in 2012. Did really well with this—went thru 5 cycles of treatment. A few bumps in the road, but nothing too bad. Took a while to get back to the normal counts, but I’m a little over 2 years in remission and feel great. There are two websites that are fantastic: www.clltopics.org AND www.cllforum.com. The lady that published clltopics Chaya Venkat does not update the site any longer, but there is great information here. You’ll find very caring people on the cll forum and lots of information—lots of discussion about recent triails and approvals of new treatments. There is so much going on with CLL research that I’m not particularly worried about it coming back. There will be a new drug to try. The main thing is to find out as much as you can about the particulars of your CLL and find a CLL expert that will guide you through the process. Knowledge is power and if you are well-informed, you will feel in charge and that’s the best way to be.

  • Post #4
  • Sat Aug 16, 2014

Has anyone found diet or supplements that helps with CLL?

  • Post #5
  • Sat Aug 16, 2014

The “good” thing about CLL is that it is Chronic – meaning most people can live with it for a long time. I was diagnosed in 1997 – and read in a publication from the ACS that upon onset, people live 10-12 years. What wasn’t explained, is that CLL typically occurs in people in their 60’s – so to live 10-12 years would put the typical patient into their 70’s.

That being said, I was diagnosed at age 30 in 1997. Doing the math, adding 10-12 years, I should have expired in 2007-2009 … that was 5-years ago and here I am. I think the thing that has helped me survive is to believe in my doctors, to believe in the treatments and be patient.

If there ever was a good cancer to have – CLL is one of them. Plan on a few bumps in the road – I’ve treated with various chemo regimens in 1999, 2003, 2005, 2007, 2008 and 2010. I had a stem cell transplant (my own) in 2003 and a bone marrow transplant (from a donor) in 2008. Up until this year I was cancer free but we found CLL and Lymphoma during a colonoscopy so I just started treating for that about a month ago.

I feel great and feel I will live well into my 60’s or 70’s … and I’m not yet 50 … so hang in there and stay positive.

Be well.

Barry

  • Post #6
  • Sun Aug 17, 2014
Hi, I'm paullis

I am male, 71,diagnosed in 2003 w/ CLL. My Oncologist also said I would die of something else before this. Semi-annual blood work with WBC’s presently at 30,000. No symptoms, no treatment. I drink green tea daily but take no other meds except aspirin. Reasonably active, walking 4-5 miles a day and staying busy. Lots of news in the pipeline about cures so hang in there. The Damocles sword hanging over your head is the worst part.

  • Post #7
  • Sun Aug 17, 2014

Believe in the power of prayer as well. I am a 53yo female who had been diagnosed with call this past December. I was looking at getting the bone marrow biopsy done if lab works were not any more definitive. But with a strong circle of supporters and prayers sent up to God on my behalf through individuals of many faiths, my last batch of blood work in July were absolutely fantastic with no indication of any type of leukemia compared to my December and Match/April blood work. I am now placed on a 2-mo recheck to make sure my status has been strongly remissed/ recovered. Increase your multi-vitamin intake and your nutrition along with a great support group of believers I’ll keep you posted. Good luck because I am new to all of this too and have reached that stage of being scared. May God bless.

  • Post #8
  • Sun Aug 17, 2014
Hi, I'm JOHN M P.

I am male, 63 yrs. old. Diagnosed

  • Post #9
  • Mon Aug 18, 2014
Hi, I'm Dan S K.

My husband was 40 when he was told he had CLL and he is 52 now and doing fine. He has gone in and out of remission 6 times and each time he takes chemo and goes back into remission again. Doc said there are people who have lived with CLL for 20+ years.

  • Post #10
  • Tue Aug 19, 2014

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