Hello, I am a 48 year old female and was diagnosed in July 2011. I am stage 0 and in wait and watch too. My oncologist has scheduled me for monthly blood tests. While the monthly tests are scary, I continue to make sure that I am following instructions. The primary symptom I had was fatigue. That's what sent me to the doctor initially. I have always eaten healthy, exercised regularly, maintained a healthy weight my entire life. I believe it is environmental but not 100% sure. I wish you well on your journey. There are many that live their entire lives with CLL and NEVER need treatment. Make sure your doctor does a flow cytometry & FISH test. These are very important tests.

Thank you rideawave. My hope is to never have treatment. I have had the flow cytometry done. My oncologist wants to see me again in February. I already have the FISH test down on my growing list of questions for that visit. I am curious as to what instructions you were referring to in your reply. I am sending positive thoughts your way!

I am seeing an oncologist/hematologist. He has me going in for CBC blood work monthly for the first six months. They are looking to see if any of my counts double. Fortunately, mine are slightly changing month to month. I am scheduled to see him next month and I am sure that my blood work will only be required once every 3 months.

Additionally, he has me taking iron+vitamin C twice a day. After quite a bit of research on vitamins, I've added B12, folic acid, turmeric/curcumin and green tea extract (EGCG). About a year ago, my GP ran my vitamin levels and I was borderline needing an infusion on D3. You might want to consider having your doctor run a full vitamin panel. I think vitamins play a huge role on how we feel day to day. I'd be happy to list all of the vitamins I take daily if you are interested.

It is good to drink or take probotics daily. I use Amazing Super Greens. I am not sure if all of this works but it seems to help me mentally knowing that I should have proper vitamin levels.

I'd be happy to talk to you on the phone if you want to message me your phone number. Positive thoughts coming your way!!!

I was diagnosed in September 2011 after routine blood tests. I too am on the "watch and wait" list. I currently am at Stage zero and stable. I had blood tests 2 weeks ago and saw my oncologist last week. My wbc has improved and I have no symptoms. I have to have them rechecked in March. It is scary not knowing what is happening from appointment to appointment but it does get easier. I know exactly how you feel and take care.

I was terrified when I was first diagnosed and became depressed. I have never been a depressed type of person before. It's the not knowing what will happen and the knowing what could happen that is scary. I was so glad to find this site. It made me feel so much better knowing I was not alone. Nobody really understands how you feel when they don't have this disease. Especially, if you are not having symptoms. Take care!!

Hi,

I was diagnosed almost a year ago 5 days before my 39th birthday. My FISH tests and genetic testing all came back favorably. No symptoms, WBC was at 17K and my Absolute Lymphocyte count was at 9K. A year later My WBC count is at 26K and my ALC count has doubled to 21K. No symtpoms. My oncologist still says I have time on my side before I need treatment. But because the numbers are slowly rising it makes me nervous. No answers, nothing I can really do except get on with my life. My day to day functions are not impacted currently with this diagnosis. So myself like so many others in Watch and Wait do exactly that.. No one wants to be diagnosed with this, but it could be far far worse.

Thank you to LoriLeeMarie and Shayna 2009.

Some days I think about this whole CLL thing and I can deal with it and go on. Other days, are really hard. I know that I have known about this for just over two months and it is going to take time. That is what so many posts say. But it is the "what ifs" that get to me the most.

I go back to my oncologist in February (with my growing list of questions!) for a three-month follow-up and I can already feel myself getting nervous about it. I hope and pray that the numbers continue to be OK and that treatment continues to be something I may not need (I hope, I hope, I hope!!!) or may need way, way, way in the future!!

There is so much information out there about CLL. I appreciate that, but at other times I just can't look at or read another article about numbers and symptoms and treatments.

Most days I feel pretty good. I'm trying to eat better and exercise regularly. Other days, I feel a twinge or pain and I wonder if it has something to do with the CLL. That's really hard for me. But I try to stay positive, my husband and son help with that and I appreciate it more than I can express. I try to stay busy. Being a mom and going back to school help with that.

Positive thoughts and prayers to all of us!

I know what you mean. I do the same thing. The worst part is the not knowing what will happen. I go back in March and am hoping for good news too. I can't read too much about it either. There is so much out there and some of it is really scary. Take care!!

Hi all,

I was dx over a year ago, but believe I've had CLL for much longer when I look back at past blood work When I first found out I had it, I was a nervous wreck, so please don't spend alot of time "googling" CLL on the internet - it will scare you silly. Most of the stuff that's out there is way outdated, and the more recent articles written about it are based on old research. Once I stopped dwelling on all the "stats", I began to relax. No one reallly knows what causes it, could be something environmental, could be genetic. In my case, it tends to be genetic because others in my family have it - and they are doing just fine! In the beginning, I had my blood checked every month. Now, I'm comfortable seeing my oncologist every 6 months. Perhaps if things remain stable, I will see him once a year. Its good to know that 1/3 of people with CLL will never need treatment. But, if so, the treatments that are in clinical trials right now are working wonderful, and it looks like it won't be long until they are FDA approved. So, even if you do eventually need some kind of management, there is a pill that is being studied that is working well in trial participants. This is not a harsh chemo type of treatment, the side effects are minimal. Look, even aspirin has awful side effects if you read all the fine print. For anyone needing treatment sooner, the trials are recruiting people based on prognostic markers and previous treatment regiments. Aside from all this, the current "gold standard" chemo treatment that is being used for very aggressive cases is having very long remissions (years - decade)

The worse part of this illness is mental. Not that there aren't physical symptoms to manage, but worrying all the time makes everything worse. Exercise is key - it happens to be very anti leukemic so don't skimp on this. Eat well, exercise, be happy, live your life - we'll all be fine.

Billionairess Brooke Astor had CLL and lived to be 105.

I had a shoulder replacement in November and I guess they routinely do biopsies. The pathologist called my primary care doc with the results. I am also watch and wait. My primary said I should see a hematologist and he said to wait until my next appt. and he would give me the name of one. It is worrisome that my primary is being so casual about it even if it is only watch and wait. I guess I would never had know I had CLL unless a biopsy was done. I see my primary next month and I will ask him if I should see an oncologist. Thanks for all the information that everyone has posted. I'll have to do a flow cytometry and FISH test as I don't know anything about them.