New DX with CLL: I was DX September 5 2017 at th... - CLL Support

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New DX with CLL

Dawn-Marie profile image
27 Replies

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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Dawn-Marie profile image
Dawn-Marie
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27 Replies
UK-Sparky profile image
UK-Sparky

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

Dawn-Marie profile image
Dawn-Marie in reply toUK-Sparky

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

UK-Sparky profile image
UK-Sparky in reply toDawn-Marie

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

Dawn-Marie profile image
Dawn-Marie in reply toUK-Sparky

Lincoln Nebraska

UK-Sparky profile image
UK-Sparky in reply toDawn-Marie

Welcome from Milton Keynes England!

Spacee profile image
Spacee

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)

Dawn-Marie profile image
Dawn-Marie in reply toSpacee

Thank you

pilantd profile image
pilantd

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!

GMa27 profile image
GMa27 in reply topilantd

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.

pilantd profile image
pilantd in reply toGMa27

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.

Irishgreek profile image
Irishgreek in reply topilantd

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.

Dawn-Marie profile image
Dawn-Marie in reply topilantd

Thank you for sharing

Goggler2 profile image
Goggler2

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!

Dawn-Marie profile image
Dawn-Marie in reply toGoggler2

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

vinnet profile image
vinnet in reply toGoggler2

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

Mosaicgigi profile image
Mosaicgigi

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

Dawn-Marie profile image
Dawn-Marie in reply toMosaicgigi

Does sound better😊

W00dfin profile image
W00dfin

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!

pkpayne profile image
pkpayne

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.

Dawn-Marie profile image
Dawn-Marie in reply topkpayne

Thank you

DebKat999 profile image
DebKat999

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

Dawn-Marie profile image
Dawn-Marie in reply toDebKat999

Thank you for sharing

Hoffy profile image
Hoffy

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.

Hoffy profile image
Hoffy

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

Dawn-Marie profile image
Dawn-Marie in reply toHoffy

I ordered the book I am excited to read this.

Dawn-Marie profile image
Dawn-Marie

Thank you

Hoffy profile image
Hoffy

great

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