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CLL Support Association
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CLL

Will be 44 next month and was recently diagnosed with CLL. I went to the doctor for something completely different, and then I received the shocking news. I have 3 daughters, and I’m so scared. I feel like my whole world turned upside down over night.

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Hey Becky,

I just wrote a reply to Cpt_N and everything I said to him applies to you, too! I also have three children and when I was diagnosed, I felt completely shattered. You need time to process and mourn. I know that you feel blindsided but you will eventually come to terms with it and realize that you can handle this and that there are so many options for treatment out there. Stay strong for yourself and for your girls. You will get through this, but it’s OK to feel sad, angry and anything else that you are feeling.

Wishing you all the best

Fell

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Thanks for the advice. Its helps talking to people that are going through the same thing. I don’t feel so alone. I never thought I would have to worry about cancer this early in my life due to eating healthy and exercising, but I was wrong.

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Becky43

Keep reading on this site. You will be so encouraged. Ask questions too. Learn about watch and wait. It may be years before you ever need treatment.

Newer medicines in trials and medicine being approved are increasing life spans of CLL patients that have bad gene markers. My husband is one receiving Ibrutinib. It's been wonderful to watch him become healthier daily.

Always remember that no one has an expiration date on their foot.

Blessings to you on this journey. You aren't alone here!!

Love, Farrpottery

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First, take a deep breath. I was where you are in October 2016. Find a cll specialist...not just a hematologist. Don't consult, Dr. Google. There is a lot of old outdated information. Treatments for this disease are advancing fast and only look to get better. Ask anything here...these folks are the best and talked me down from the ledge. See a specialist and get FISH and mutation testing if you can. (Easier in USA). This will help guide treatment IF you should ever need it.

I am 47, three kids, no treatment as I have good prognostic markers. Might be years if ever. I'm lucky.

It's ok to be upset, but you'll need to educate yourself and get the best care possible to look after you while you are in this journey....for you and those 3 girls.

Many believe that this disease will

Be cured in our lifetime. You're in the right place.

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Do you take any supplements?

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No. I just take care of myself and exercise. I try and do strength workout and cardio. I enjoy life. Everything in moderation. Exercise definitely makes me feel better mentally and physically!

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Hello and welcome Becky! I'm new to this site but not new to cll. I was diagnosed 10 years ago but docs are pretty sure I had it the year before. I was totally devastated. I've been on watch & wait 10 years now and no treatment. I did have an ivig infusion recently because my immune system was down and I couldn't seem to shake a sinus/bronchitis infection which dragged on for 7 weeks. I'm feeling better today and have 2 more ivig infusions scheduled. This support group is awesome so hopefully you will stick with it and us. Try not to Google things but rather talk to your doctor and interview hematologist until you find someone you are comfortable with. I go to H. Lee Moffitt Cancer Center in Tampa, FL

Best Regards,

Dianne

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There is a lot to digest right now but this is a good summary. Dr Chris Fegan is excellent. It might help give you some perspective at this difficult time. I know how it feels to get a diagnosis you weren’t expecting. I promise it will get less scary and you will get back to centre. Try and learn about CLL through videos and edocuments.

cllsupport.org.uk/article/w...

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Thanks so much for this article. I gave me great comfort and hope for the future. God Bless.

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Lots of people have given similar replies, stay strong, great medications and treatments developing all the time. You can live for decades with CLL and healthily.

Love and prayers

Milton Keynes Marc

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Becky,

You've already received sensible advice from others but I thought I'd add my background as possible reasons for optimism. I was diagnosed with SLL (same as CLL slightly different presentation) in 1994 when my son was 18 months old. I was already stage 4 and needed treatment with in 6 months. First remission lasted until 2007 and second remission is still holding and I have so say I feel in glowing good health. My only suggestions are eat healthily, keep fit (easy for me I'm a sports nut) and enjoy the good times. Do not let this disease rule your life, concentrate on the things that are really important to you, everything else is just noise.

Jacques

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I am happy for you. I love to exercise and find eating many small meals is better than eating big. Exercise, good food and moderate sunshine on walks or hiking. I love my coffee and I love life. God has been good to me. Bless ALL of you here. WE will make it a good life after all, I promise.

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Hi Becky, I'm 48, also have 3 children, the youngest is 13 & I was diagnosed in March this year when seeing my GP for something else. It is a complete shock and takes a while to sink in, there were a lot of tears & wondering whom to tell and when. I waited until my daughter finished her A levels & then told them and by then I had had a few months to come to terms with it myself. I've no symptoms and hopefully will be in W&W for a long while yet . This site gives more info than I've had from health professionals but I haven't really looked into treatment and things as I'll do that when it's relevant to me.

Good luck, you'll find this site invaluable & maybe like me can meet up with a few people close to you, where are you?

Take care

Bethan

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Hi Becky welcome to the family. Its an emotional rollercoaster at first. Not easy but it pays to keep calm & carry on (No pun intended). There is a fountain of knowledge & experience here do not be afraid to ask anything. Best wishes.

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Becky, We have been given a big scare that we can't handle so stay on this HealthUnlocked and you will learn to start living again because this is not a death sentence. You could be on watch and wait forever and never feel sick or need treatment (like myself). Live you're life completely and don't let a diagnosis change you or your friends. One day you will say "If I knew I would live to be this old I would not have ruined my days worrying.

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My children were grown when I found out in 2012, however I had it for years prior to diagnosis. I remember the shock, anger, depression, feeling alone. I found a website similar to this one and it was amazing what knowledge can do. It opened up a whole new world and understanding of this cancer. Depending on your lab results you probably will be in watch and wait. That is the doctor will order visits and lab work periodically and watch how you do.

I have been doing fine, feeling great for years and then recently slowly became tired not really realizing it. It turned out my spleen was very enlarged and I had anemia. My numbers had grown to 138 when I was sick however it was the spleen that was the frosting on the cake for treatment. I just started Ibrutinib and except for few side effects feel great. All my energy and more has returned.

A Cll clinical specialist will guide you to what flavor of Cll you have. You will have a better idea of what you may expect.

Every year better and better treatments are available to us. It is amazing. The members of this website are very experienced knowledgable they will quickly answer you questions.

So be careful of sun exposure, we are a higher risk for skin cancer, exercise, eat healthy enjoy your family. It is the whole picture that helps.

Wishing you and your family the best.

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