Update

After waiting a week for test results, I finally called my doctor. Found out he had been out of the office since Thursday and not back til tomorrow. The nurse called me back with results of my CBC. Still high at 25k. Flow Cytometry test is still not back.

I am a wreck today. Any chance this test will come back negative? Or should I prepare for the news I am dreading to hear?

I have so many things in this life I want to do...mainly raise my children and be there for them throughout their life. I am ready to be proactive and fight, but the constant worry about the "ifs" and the "whens" is what is hard for me to handle.

Needing reassurance that I will be ok and make it through this.

22 Replies

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  • baq724,

    Hang in there! I was diagnosed when I was 49 and that was in 2008. I'm still in watch and wait.

    It's easy to get hung up on the if's and when', especially at the beginning. But you don't even have all your results back yet. You need to sit down with your doctor and get all the details of your testing and ask any questions that you may have. Oh...and stay off the internet, unless you know for sure that it is a "safe spot" or has good, reliable information on it like this one. Remember too that there are many options for treatment out there now that wasn't there in 2008 when I was diagnosed. And more drug trials are being done as we speak. If your diagnosis is CLL, which we don't know for sure yet, then you should seek out a CLL specialist, which this group can help you with.

    Every one of us who was diagnosed with CLL, knows exactly what you are going through. We have all been there. It doesn't make it any easier for you right now, I know that, but this group is here to support you and with all the experience of every one, they can help lead you in the right direction. Remember, too, that you are your best advocate. Always ask questions that you may have and don't think that any are not worth the asking, because if they put your mind at ease, they are definitely important!

    Let us know how things go! We are all in your corner!

  • Thank you for your response. I am just trying to process and prepare for everything. So many questions....who to tell? Do I need to alter my lifestyle as far as work (teaching) or my activity? Diet? Things to avoid? Etc...

    I know it depends on each person and every case is different. I am just worried about the usual.... seeing my kids graduate, walking my daughters down the aisle, growing old with my wife. I have found more comfort here than I could have imagined. Thank you all so much.

  • When I was diagnosed, I only told my family. I didn't think it was necessary to tell anyone else as I was feeling great. I just retired from education after 31 years, 7 of which was after my diagnosis. I found that work was great at keeping me busy and I rarely thought of CLL. (Just when I had to go to my regular checkups). I retired because I wanted too, not because I had too. I had other interests that I wanted to pursue and retirement gives me the time to do so. Don't give up the job just yet...I'm sure you are good at what you do and the kids need someone like you!

    I also joined a gym, as exercise does help with my mental attitude and keeps the immune system going. I'm on no special diets, but find the regular eating of hot peppers keeps my aches and pains down and I just eat good, wholesome foods on a regular basis.

    As Cammie said, you don't know what those tests will tell you, so don't go to the "dark side" just yet. Let's see what the doc has to say about everything!

  • Great advice!

  • Hi baq

    Firstly no one here can say what the tests will confirm.

    Secondly your counts whilst raised are not uncommon and even if the diagnosis is confirmed this is certainly not the end of the road for you or any of us!

    It's only natural that you are concerned! But remember cll is a chronic disease and with 33% of patients never actually needing treatment.

    My own diagnosis was in 2000 so I have 16 years living with this condition and although having treatment in 2005 and 2015 I still here enjoying my life with my granddaughter and daughter.

    It's difficult waiting but if there was a major problem you would have been contacted quickly and you would not be waiting for results believe me!

    Easy to say but take a deep breath and try not to build things out of proportions.

    You will get tremendous support here but also need to learn to live with any diagnosis and it does get easier.

    Ask the questions you need answers for of your medical team!

    Remember we have all been through this stage at diagnosis and through watch and wait many of us for numerous years after diagnosis.

    We are routing for you!

    We are here to supporting.

    Geoff

  • Thank you Geoff. I am sure I will eventually come around. This is all such a shock right now. I always thought I would be around until I was 80 or older. I guess when I think of most types of cancer, I think of an earlier than normal death. I know all of these thoughts seem silly, but it is hard to keep those thoughts out of my head.

  • I'm 18 years post diagnosis, still have those thoughts but rarely and you will become more experienced in dealing with them...

    There is always an 350 kilo gorilla in the room, but most of the time he is quite friendly... 😄

    You will do fine...

    ~chris

  • Who knows how long our lives will be?

    We could be run over by a bus,hit by a car or end with a serious and life threatening disease. Fortunately cll is usually chronic and not normally immediately life threatening.

    You could,indeed,live until you are 80 or more my aim is to reach 100 and get a telegram from the queen whilst being a total pain in the backside to my granddaughter and daughter lol.

    The thing you will learn from cll is amazing!

    You will cherish your friends and family much more. You will become a better person in yourself you will learn what is important to you!

    Life will take on a new meaning a much more fuller understanding of what is important.

    So whilst currently you are confused and concerned as well as wondering what will become of the future you will find that it's still positive !

    Enjoy the rest of your life it will be more forfilling and longer than you think!

    Geoff

  • Wonderful advice Geoff. I'd love to make 100 as well!

  • Great response Geoff. You speak for so many. Thanks, Sally

  • I was diagnosed with SLL 1.5 years ago and I too have hard days, but wonderful days as well. I wanted to share with you that my dear Uncle was diagnosed almost 20 years ago with CLL and he has yet to need treatment. He is currently 83 years young. Keep us posted and take each day as it comes, great strides are being made in the fight against SLL/CLL. :)

  • Thank you so much. I feel weak and shaky, but I know it is just the anxiety of my first appointment tomorrow. The main problem is the unknown and my young age. I think I would deal with things a lot better if I was 65 or 70...but I am 46 and suddenly so many things are in question. Seeing my kids grow up, married, grandkids, retirement, growing old. I am thankful for this board and for the positive strides being made with this disease.

    Right now, I just feel broken and not whole. It is hard for anyone to deal with. Hoping the darkness lifts soon and brighter days follow.

    Thanks so much for your reply!

  • I was diagnosed at 49, so I feel your anxiety. Some days are better than others. Please try and relax as much as possible, exercise helps a lot I have found. I have my quarterly blood test tomorrow, so today is one of THOSE days for me, but it will pass. I promise as soon as you get your results you will feel calmer regardless. Just remember all we really have is one day at a time, all of us humans. Hugs

  • My appointment is tomorrow too. I have already received the majority of my tests online except for the leukemia/lymphoma panel. My CBC numbers were down actually. ALC was down by 4000 from two weeks ago.

    Hope we both have good updates tomorrow!

  • My appointment is tomorrow too.

    Almost my 19th year CLL anniversary! 😊

    ~chris

  • Do you have to send your Consultant questions ahead of appointment to give him a fighting chance of answering? :-)

    Hope it goes well Chris...you're a CLL warrior!

    Newdawn

  • Thanks Newdawn. HA! Yes I have seen the "deer in the headlight 😳 look" from my long suffering doctors...

    ~chris

  • I know you've had some hard times along the way but... 19 years. Wow!

  • We will, I am thinking positive thoughts!!!

  • Thank you Chris!

  • baq724 - the pressure is understandable but you are making a fundamental mistake in your thinking. First, do not prepare for the worst, prepare for the best news instead! Be positive! What difference is it going to make if you worry sick ahead of time? The only difference is that it will have a very negative impact on your mental state which deep down does not help you coping with the disease. Second, Ibrutinib is a fantastic medication and many of us can only dream about having access to it - assume you are in US and have access to it so you are so much better off already. Third, there are plenty of new medications/treatments either already available or in the pipeline to be approved for CLL so the outlook is quite reassuring for longer term planning.

    Personally, I have been diagnosed at 44 years old (46 now) and also have a family to take care of. While I am certainly aware of what is going on I am trying to stay positive and not panic (although my initial reaction was similar to your own). Educate yourself and get inspired but many folks on this forum which offer not only an immense amount of knowledge but are also kind and understanding. Remember, knowledge is power and together with positive attitude can work wonders.

    Stay strong! This is a journey you have to take but you will come of victorious - believe it!

    Best,

    Andrew

    BTW 25k is really not a very high number in ALC world. I am already 60k and doing fine except some nodes keep popping up here and there...what really matters is how quickly your ALC is increasing. Docs start monitoring this once counts reach 30k...

  • Holding your hand while you wait...

    Virginia

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