CLL Support Association
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New DX with CLL

I was DX September 5 2017 at th age of 57 with CLL. I have always been healthy and this set me back for a moment. I have a very strong spiritual foundation. I have decide it’s much like other chronic diseases. I must take better care of my body. My labs are at the watch and wait. The first stages high wbc, high lympocites, tire easily, hgb normal, platelets Normal, sweets like hot flashes. I am told by my hematologist onocologist the gene make up of my cells will act + to treatment. Reading the life stories give me hope and I will want to share my story

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Hi Dawn-Marie, welcome to the club no one volunteers to join but provides, empathy, virtual hugs and expert knowledge. You do not say what part of the G;pbal Village you are from. Welcome and long may you enjoy Watch and Wait with little symptoms.

UK Sparky

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Thank you! I don’t know whatG;Pablo Village means?

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Sorry Anne Marie should have read global village! Where in the world are you based. Old man trying to type on a tablet, sorry!

UK Sparky

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Lincoln Nebraska

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Welcome from Milton Keynes England!

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Welcome. Our situation is not dire by any means. Your S. Foundation will aid you too. Glad you found us! (It is my hubby who has the CLL, he is 70yo, doing well and was diagnosed in 2017. But his labs look wonky as far back as 2014.

Spacee (Linda)

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Thank you

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Hi Dawn-Marie, I know the feeling. I was diagnosed at age 54 (a few days after Labor Day in 2014) and was feeling better than I'd ever felt in my life. It was a real shocker for me since this disease decided to behave aggressively towards me right from the get-go. Within 6 months I had to start the FCR treatment which gave me about 18 months of remission. It was determined that I was in relapse mode last March and since April I've been on Ibrutinib. I've had a few stressful moments the past 9 months and ability to turn to this group of people in moments of despair and or to learn more has been a blessing. I'm glad you found us and I want to wish you the best of luck!

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Pilantd... Chemo worked for 18 months and then you had to go on ibrutinib? Isn't that drug for rest of your life or short term? I am going for second opinion for possible treatment. My doc said chemo and then I am done. CLL is so complex! I have been on ww for 12 years. Feel fabulous so thinking about any treatment is scary.

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Since I'm officially in relapse mode it's my understanding that IB will be part of my daily diet until it no longer works. Other members on this site have said there are other treatment options if IB stops working. A few weeks ago a member said they'd been on IB for 6 years without any side effects. After getting through the initial side effects its been smooth sailing (knock on wood) with the only side effect being finger nails that constantly chip, dry skin and some unknown bruising.

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Saw two oncologists, they told me that many people go off Imbruvica a year after blood work normalizes for a few tests. They theorize, why keep taking massively potent, expensive drug ($11,000 a month in USA, or $1,000 a month for me as a co-pay) unless you absolutely need it. It is a tircky disease for sure.

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Thank you for sharing

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I too am new to this forum but thought I would tell you a bit about my story. Hopefully it sounds positive to you. I was DX in July 2007 at age 56 and have been W&W for 10 years...thankfully still stage 0. No treatment but I do take vitamins and various supplements. My labs have been pretty stable for about 4 years with WBC hovering around 80k. Last test 77k. My energy is good for 66 although I do take an afternoon nap most days and I got rid of the occasional night sweats by adopting a ketogenic diet (my GP had me on metformin which I have stopped taking. Good luck on your journey!

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Thank you, I also take vitamins. And I’ve started doing some juicing. I am about 30 pounds over weight now.

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Goggler2

It is encouraging to read 10 yrs wnw. I am 66 male dx 15 months ago at stage0.

I am in india and am keen to have a long wnw!! I am keen to know about supplents/vitamins and any other measures that u took to have 10 yr wnw?

rgds

vinnet

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Hi Dawn Marie, welcome to the group. You will find much comfort and knowledge here. Someone else in the group (wish I could remember who) refers to the “watch and Wait” as “Watch and Live”. I like that much better.

Beth

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Does sound better😊

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Please continue all your current self care practices and research proven nutritional approaches for cancer prevention. Set your sights on making WW last as long as possible!

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Welcome to our club Dawn-Marie. Your positive attitude will be of great value to you. I want to agree with you that this is something like other 'chronic' diseases but it must be monitored. Each of us is different. Let's hope that you are long in watch and wait.

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Thank you

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Hi Dawn-Marie

I'm a 54 year old woman from New York diagnosed in November of 2017. I felt a connection to your post and just wanted to say Hello and welcome to this amazing group, I feel so fortunate that so soon after my diagnosis I found myself here, it has been truly invaluable to me in so many ways.

Debbie

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Thank you for sharing

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Welcome.

Cll society web site can be very helpful.

Get a cll expert opinion before any treatment. Things are changing quickly. A lot of new drugs and clinical trials.

Be well.

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Btw : N of 1 is a book about someone who had CLL.

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I ordered the book I am excited to read this.

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Thank you

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great

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