CLL leukemia: Just diagnosed, what can be done?

Eight years with CLL and it has not impacted my life style. I get simi annual blood work and maintain a healthy and positive life style

they say cll is a slow moving blood cancer and usually it is a watch and wait. I have had ir for 11 years and so far no treatment just the blood work.

My husband has just been notified by his primary physician that he has CLL. This showed in his routine blood test for his annual physical exam. The both of us were in shock when he was told this news. His next step is to see an oncologist next Thursday. I have been looking through the information on this wonderful site, but feel overwhelmed with the amount that there is to learn about this disease. My husband and I would welcome any input from anyone going through this. Right now, we are pretty much in the dark about what to expect. Thanks so much for any insight that anyone can provide to us.

CLL was a shocker to me, too. But, I'm in stage Zero where it's just watched. You may find out the same diagnosis.
What was not a surprise was my exposure to Agent Orange over 50 years ago as the probable cause. Keep your hope up as it can be controlled.
Stu in San Diego

Hi @mabfp3 It is always quite a shock when we get unexpected news from our doctors. I can empathize with what you’re going through. The positive note is that CLL generally is very slow to develop and it can be years before any action needs to be taken. I’ve posted some information below for you to get started.
Two sites are informational on CLL itself. It will provide you with details about the disease, how it’s diagnosed and treated.

https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/about/what-is-cll.html
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https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428

There are other members in our forum who also have CLL and have discussions about their experiences. I’ve posted the links to the conversations. Some of the are quite old but they are always relevant.
When you click on those links, there’s a box under the discussion heading that says Oldest to Newest. Click on there to take you to the newest, most current discussions. Feel free to post questions or comments to anything that grabs your interest. Hopefully you’ll get some insights about CLL.
Just remember, not everything in these discussions will be germane to your husbands case.
CLL~Newly diagnosed. https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/
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CLL~referral to CLL specialist. https://connect.mayoclinic.org/discussion/cll-referral-to-cll-specialist/

You’ll get much more information at your husband’s appointment next Thursday. Write down any questions or concerns you have. I know how the white coat syndrome works…we forget what we want to say in detail once we’re in the office! Writing things down helps to stay on task and get the most out of your visit.
Here’s also a link to some good discussions on how to get the most out of your first appointment with a specialist.

Your Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I think you’ll find a lot of folks who have gone through similar experiences willing to offer encouragement and information in Mayo Clinic Connect. If you don’t mind, I’d like to follow along to see what your husband finds out at his appointment. Will you let me know?

Hi Lori, Thank you so much for your encouraging response to my post, along with the links that you sent me to help get us started. I will go to those links and take notes before my husband and I go to his appointment on Thursday. Hopefully, his numbers will be on the lower side. This diagnosis just came out of the blue for my husband. You are right……we were in shock! I will continue to take part in this wonderful site. Thank you for being a volunteer for so many people.

Hi Stu, Thanks very much for that encouraging news and for taking the time to reply to my post. The fact that you say it can be controlled is very hopeful. I am so sorry that you were exposed to Agent Orange. Thank you for your service to our country. I read your message to my husband and it made him feel encouraged.
MaryAnn in MA

I was diagnosed with CLL 5 years ago, shortly after being diagnosed with psoriatic arthritis. My rheumatologist sent me to a hematologist/oncologist for a consult after bloodwork showed a high wbc. Fortunately for me, my brother-in-law was diagnosed with CLL many years ago and is still doing fine, so I was not that frightened to learn I had it.
My white count has increased steadily, but I’m still at stage 0 and doing “wait and watch”. My oncologist said the white count can go up and down. He assured me that most people with CLL live normal lives, and if my situation should change, there are effective treatments and new ones in the pipeline. I see him twice a year.
So, please know your husband has every reason to be hopeful for a good outcome!

Thank you so much for your thoughtful and kind reply! It has given me much encouragement for my husband. I will show him your response. All my best wishes for continued good health!
MaryAnn in MA

Recently diagnosed with CLL and I’m suffering with a good deal of
“ pain in my neck”. I have applied warm compresses, take an ibuprofen, self massage, with no relief. It seems to be worse through the night. I sleep on an elevated platform already. I just was hoping somebody might have a suggestion to find some relief. Thank you