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CLL - newly diagnosed

Blood Cancers & Disorders | Last Active: Aug 2 11:42am | Replies (117)

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@katemn

@fonseca, do you have a first name .. makes it more personal! I can only speak from my own personal experience. My husband was diagnosed in I think 1995 or 96. Was working himself to death .. very stressful business owner .. getting 3-4 hours sleep a night. Was told he had Stage 4 CLL. So what did he do? Sold his business , divorced his wife of 36 not so good years, went on a long road trip by himself to re evaluate his life. Came home .. started working out .. eating in a more healthy manner .. lost weight .. took up golf and fishing .. re established old friendships.

When I met him a year and a half later .. I was not about to marry a man about to die so I met with his Oncologist .. was told he was back at Stage ONE!! That he would NOT die of CLL .. he would eventually die of an infection. Travel forward to 2014 .. we have a wonderful GOOD Oncologist (do your "due diligence and find a GOOD ONE!). My husband is now THIS MANY YEARS LATER .. now back at Stage 4 .. BUT there was a NEWLY approved Chemotherapy that our Oncologist said could be "potentially life changing" .. IMBRUVICA. My husband had tried a couple of other things SO when Imbruvica was approved .. my husband has now been on it since October 2014! As we have been told .. it is NOT a cure .. but is "life sustaining". He is doing wonderfully on Imbruvica .. some bruising so what the heck!

@fonseca, I have told you this long story .. Why .. because since I met my husband in 2000 .. we have had a WONDERFUL life .. have traveled all over the world .. had a glorious life! THAT is why I took the time to tell you our story! Our secret? DENIAL! Our attitude through all our health issues .. If it is NOT staring us in the face .. it does NOT exist .. we just go on with our lives and have fun! PLEASE .. you do the same! Life is what YOU decide to make it! Make it fun! Hugs to you both! Katherine and Richard

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Replies to "@fonseca, do you have a first name .. makes it more personal! I can only speak..."

Katherine, thank you. On Tuesday the 7th of September I will find out my bone marrow result. I know a treatment will probable be offered at that time. Imbruvica has already been mentioned once by my Nurse Practioner so your words gave me comfort. Thank you.

Thanks for sharing this story....I was diagnosed not quite a month ago and was devastated at 53. Since then, I think I've been in denial and each time I go to a doc, assume they're going to say there's been a mistake...I love that you mention denial, and also the divorce. I have a beautiful life from the outside, have been married 29 years and we have raised two great adult men. But. I have always considered leaving and being on my own...mostly b/c while we get along fine, we have grown apart and our interests do not align. Does it make sense to finally venture off at this point? We realyl have a beautiful home and life, but this diagnoses has really got me thinking....