I'm 57, not that much older than you. I was diagnosed with CLL almost 2 years ago. It's been that long since my diagnosis, and I'm STILL scared. I've also been battling depression, something that I never thought I would ever face, but it seems like it comes along with the disease. I have also had numerous people tell me that I was fortunate to have the "good" kind of cancer. Excuse me, but NO cancer is good. It takes a lot of nerve for people to say that to a cancer patient. I'm dealing, but it is rough...and it never leaves my mind. I received a short course of chemotherapy starting about 3 months after the initial diagnosis in an effort to alleviate symptoms that were making life a living hell. I still have symptoms of the disease, but my white blood cell count is not at what is considered to be a "treatable" level. Once it gets high enough, they may opt for another round of chemotherapy.

I have also found that not many people around me really understand what the diagnosis has done to me emotionally, physically and spiritually. That's why I came here...to vent my frustrations and feelings to others in similar circumstances, because only those who have been there can truly understand my fight.

Does any of this sound familiar for your situation?

David

Totally relate ... I am having some symptoms and wonder if it’s in my head as I am supposively low stage so not sure when I should experience symptoms of this cancer.... I too was told I got the “good” cancer and was shocked there could even be such a thing ... how ignorant to say that to me... I feel like no one really thinks of it as cancer so they don’t see me ill do they don’t get the emotional stress involved

I have body aches and pains accompanied by periodic low-grade fevers, night sweats, chronic nosebleeds (on the order of around 4 or 5 a week), extreme fatigue, and have experienced a great deal of weight loss, all of this happening while I am supposedly in "stage 0." I can totally relate to the emotional stress...I'm on anti-depressants for the first time in my life. My symptoms are definitely not "in my head." This has been such a huge thing to wrap my head around. It continues, and I'm almost 2 years removed from my initial diagnosis.

You are not alone...and don't let anyone tell you any different...it's okay to be scared. I'm still scared. That being said, I've been trying to educate myself about the disease, as I've sometimes found my oncologist to be somewhat vague on the details when I have a checkup with him. I have to literally press him for more information. I've had many people tell me not to get online and read about it, but I feel that, by doing so, I can be better informed about what I can expect from the disease, whether it gets aggressive quickly, or just lingers in the early stages for years.

I take vitamins and immunity-support supplements in an attempt to keep myself from catching colds and viruses. The flu this year has me scared. In Alabama. we've already had at least two deaths from it thus far. I took the flu shot back in the fall, but the medical professionals are saying that it is less than 10% effective for the variant of the virus that is out there now. Trying my best to keep from getting it, since I know that about 15 to 20% of my white blood cells (namely the lymphocytes) are cancerous, and that impedes my body from being able to fight infections as well it it could normally.

What really challenges me is that the people around me don't think I'm sick. They look at me and say, "Oh, but you look GREAT!" Problem is, I don't FEEL great...at all. Add to that the fact that there is no cure for CLL, and my frustration level goes through the roof. Everyone says, "Well, at least they can treat it." True, it can be treated, but there is no cure. Every time I say that to those around me, they get mad and say that I shouldn't talk about it that way.

Truth is, though I am a Christian, I'm also a realist. I know what's coming. I don't want to pretend that there is nothing going on, because there is something going on, and I face it every single day. They don't realize that I don't feel good most of the time, and they don't understand why I have no energy. They don't understand why all I want to do on my days off is to sleep. They don't understand why I don't enjoy doing things that I once used to enjoy. They don't understand how I could BE sick when I don't LOOK sick.

I really don't know if I'm making any sense or not...hoping you understand.

I sent you a PM, by the way.

It is scary, the diagnosis knocks you sideways. And doctors are not always so informative. Over the years (eight plus now since diagnosis) I often felt my oncologist considered me small potatoes compared to many of his other patients, and certainly some in the waiting area were clearly much more acute. But I did wish he spent a little more time explaining things, although maybe I was too frightened to hear or absorb. I don't have symptoms really, a little easier to tire, maybe I catch viruses a little more often. But after all this time, I have managed to put the CLL to one side and I hope for the same for you. And I do believe they will find a true cure in the next decade.

Hard as I feel young 48 and I am dealing with another health issue too but yes it seems like this is the “ good cancer “ and I should be okay with that
But I am not

I’m 48 as well, it’s strange being my doctors youngest CLL patient. I was diagnosed in March of last year and I’m still trying to wrap my mind around it. Don’t worry it bothers me as well when I hear this is the “good” cancer, but I am just trying to play the hand that is dealt to me. Just keep positive!

I hear you .. I am a mess with it all over analyzing all the parts of my blood work trying to figure out wow .... its nuts

I am 62 and was diagnosed Sept 2016 although the doctor thinks I have had it for years. My gene mutation is the low risk type and I thank God every day for that. I initially had to be put on Zoloft for anxiety as I was dropping weight and developing high blood pressure; all self-inflicted. I also started back running, which I had stopped a couple of years ago for whatever reason. Since my diagnosis, I have run two half marathons and various 5 and 10k races. My doctor says I am extremely healthy and to keep up the lifestyle. My best advice is to stay off the internet unless you are reading about good advancements being made. Sign up for newsletters from the Leukemia Lymphoma Society and find people who are living with forms of chronic cancer. Right here in my small town of 5,000 people, there are two friends who are living full lives and I never knew it until I was diagnosed. The stress and anxiety is all justified but do not let it identify you or strip you of your joy. Yes it is still always in the back of my mind but it no longer stops me from living life. In fact, it has made me more aware of my blessings. Keep the faith.

Kathleenkk, I am 64 yrs old now and I was diagnosed with CLL in 2008 so I was 54 when first diagnosed. I was treated once with Rituxan for 2 yrs which put it in remission. Then it came back full force last yr (2017). I am on a new drug called Imbruvica, as the CLL impacted my bone marrow. I have a lot of pain with this new drug- bone pain, fatigue, and still at times, nausea. I understand what you're saying... people say "you look great" but hey, we are not normal. All we can do is the best we can, try and stay positive, look for anti inflammatory foods and supplements (first check with your Oncologist re: supplements... even some herbal teas I can't take because it will block the Imbruvica), exercise and do the best you can. We can live for years with this disease. We have to stay positive.. at times I have a hard time with that because I don't feel the same as I did before I was rediagnosed with CLL; the bone pain, the fatigue etc., but I fight. We have to fight. And not give in to it. Your attitude and faith can totally effect your body. If you need to, get a good counselor, one who understands cancer and it's effects on people psychologically. Every day, no matter what, it's there in the back of my head. Maybe because I am taking a medication for it. And maybe because it had gotten worse (I am classified Stg 4/Intermediate risk). There are some great trials out there happening with T-cells... taking your T-cells (they are your defense against disease/anything that enters the body that shouldn't), removing some and re-engineering them to specifically fight the cancer. They are having a 92% success rate. The trials are for people who are high risk, people that can't take Imbruvica. So keep the faith, and keep living your life. Do what you can do when you can do it. Try to find something great to acknowledge every day. Write affirmations and put them on your mirror. Anything to keep strong.