Anyone have chronic lymphocytic leukemia (CLL)?

Yes. I was diagnosed a few months ago. No treatment yet except what I am doing to build my immune system. At this point I’m fatigued and losing a lot weight.

@suzjlance
Fatigue goes hand and hand with CLL. At times I feel good if I can get dressed and make it to my recliner! Other days I am in the Garden for 10 minutes!
Weight Loss can also be symptomatic of CLL!

Are you having any other symptoms like lymph nodes swelling in neck, arms or else ware?

Treatment usually does not come around till you are symptomatic with multiple areas of involvement like swelling lymph nodes, Night sweats, poor blood work. These in combination usually result in beginning of treatment!

You need a good relationship with a Hematologist/Oncologist to follow and partner with!

There are only a handful of CLL only specialists in the world who only specialize in CLL!

But a good Hematologist/Oncologist will be able to help you on this journey!

I was diagnosed in Oct 2020 at 64 I’m now 70. Everyone of us is unique and different because of the genetics so it’s not a cookie cutter and treatment is individual in nature and based upon the Fish and Flow Cytometry results!

My results and prognosis is quite poor however many people don’t require treatment at all or for a very long time! Most fall into the latter group!

Best wish’s
Cliff

@hissteps4u Thank you so much for the email. I appreciate you! I had MGUS for 4 years and diagnosed with CLL and LPL a few months ago. My first oncologist was not good so my primary doctor referred me to another one. He is much better and listens to me and educates me. I have lost 10 or more pounds and have fatigue but my lymph nodes don’t seem swollen. The back of my right knee is and I have blood clots. I’m going in for a venous ultrasound next week. No sweats. It’s hard but I walk almost every day and do yoga stretches. It helps a lot. They determined I have this from blood work and a bone biopsy.

@suzjlance Hi, I didn't have any noticeably enlarged lymph nodes either – though the doctor found them to be very slightly enlarged. Regarding weight loss, I was having some of that as well. They determined that I had a slightly enlarged spleen, which was apparently pressing on my stomach. After starting Zanubrutinib, it resolved my hunger issues.

Best of luck at your next doc visit!

Yes to CLL. Just diagnosed. Exploring a Hematologist Oncologist on my plan. Right now my excellent primary Dr. Monitoring my blood count. Any news appreciated.

Good morning, @rimmy2 I’d take this as a positive sign that an MD snagged your husband’s case ahead of time. This doctor sounds very proactive and wants your husband evaluated by an hematologist oncologist without you having to jump through hoops to get an appointment with the NP.

After this MD saw the blood results and noticed the same upward trend in absolute lymphocytes that you did, it was a no brainer to have the referral. Again, it doesn’t mean anything alarming. Just that doctors look for trends and there is one pesky result that is slowly creeping upward.

Not knowing anything about where you live or the clinical setting, I don’t know how your husband’s first appointment will go regarding blood work and such. From my personal experience my hematologist oncologist office is connected to a hospital. Blood work is drawn there and all the results are usually available within a half hour. So basically, I have labs drawn and a consult within the hour with my doctor.
I’m not sure if that will be your husband’s experience. But the first meeting will be a good start for him. Again, as I mentioned before, if this is CLL, it is one of the more commonly, successfully treated diseases and most people have long, healthy lives. Many people who are diagnosied only find out through blood work such as your husband’s because there aren’t always obvious symptoms. They can have developed CLL years before and aren’t even aware.
When symptoms become more pronounced, such as night sweats, low grade fevers, unexpected weight loss, fatigue, drastic changes in blood work their doctors may suggest that it’s time for treatment.
My younger neighbor (now in his 40s) developed CLL about 15 years ago and began treatment about 5 years ago. He has a wife, 4 kids and is outside doing yard work, playing football, jogging, bikes, etc. His life hasn’t changed except for a daily pill and occasional blood tests. He and I chat sometimes because I had AML, which is really aggressive and a bone marrow transplant coming up on 7 years ago the end of June. I’m 72 now, super active and really feel most days like I’m still in my 20s. (Hah, my brain included). Anyway, what I’m trying to get across, is that news like this doesn’t have to lead to the worst case scenario.

Mayo’s website on CLL has some good questions as prompts to ask the doctor: For chronic lymphocytic leukemia, some basic questions include:

Do I have chronic lymphocytic leukemia?
What is the stage of my chronic lymphocytic leukemia?
Will I need more tests?
What are the treatment options?
How much does each treatment prolong my life or increase my chances of a cure?
What are the potential side effects of each treatment?
How will each treatment affect my daily life?
What treatment options have shown the best results?
What would you recommend to a friend or family member in my situation?

The doctor will also as your husband if he has any symptoms, such as the ones I noted about about night sweats, fatigue, swollen lymph nodes, unexpected weight loss, that type of thing. Just relax, bring your list of questions and don’t hesitate to get clarity on things the doctor talks about. Both of you can go to the consultation appointment. In fact, most doctors appreciate the extra set of ears. Often when we patients are listening, the conversation moves from one thing to the next so quickly that we forget some of the comments. So it can be helpful for the spouse to jot down notes. My husband did that for me. Then we had key notes to discuss later.

Ok, take a deep breath and exhale slowly! Cuz I know you’re holding yours! Right? Been there, done that (and I still wear the shirt! LOL ). 😅Let me know how the appointments turn out, ok?

Yes to CLL. Just diagnosed. Exploring a Hematologist Oncologist on my plan. Right now my excellent primary Dr. Monitoring my blood count. Any news appreciated.

@loribmt
Good morning Lori-
My husband saw a hematologist yesterday. He thinks it’s CLL but Mantle Cell was also mentioned. We’re waiting on the results of the flow cytometry.

He was not worried at all but when I looked up Mantle Cell, it looks a lot worse than CLL. I read it’s very aggressive and affect life span more.

Is this routine in diagnosis, meaning, ruling out Mantle Cell? The dr wasn’t concerned about my husband and said don’t worry but I wanted to hear from you whether the ruling out is routine in CLL diagnosis.

I know you’re not a doctor but you have a wealth of information.

Thanks.