Hi all, First off - I didn't know what CLL was until today (still probably don't know exactly what it is). While looking for answers on my lab results I came across this group.
As the title says, I have elevated lymphocyte levels, low platelet count and an enlarged spleen. These have been this way for a couple of years and continue to show up on my routine yearly physical. Several months back I was sent to an oncologist and they ran further blood work and determined that all these were nothing serious. The Dr didn't really explain much and I didn't ask too many questions at the time. I am 32 years old and am generally healthy.
My numbers typically run just outside of the "normal" limits.
Lymphocytes: 48%
Platelet Count: 136
Enlarged Spleen: This was determined during an ultrasound the oncologist ordered as part of his investigation.
The only other symptom that comes to mind is unexplained profuse night sweats.
These all just seem like they are correlated and was curious what your thoughts were.
Think I should get a 2nd opinion?
Thanks.
Written by
cecil32
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You absolutely do need an opinion because I’m not sure you’ve even had a reliable first one yet! Have you actually had a CLL diagnosis cecil? Has a flow cytometry test been done?
I’m afraid percentages are not helpful, it needs to be expressed in absolutes. How enlarged is your spleen?
You’re very young and profuse night sweats suggest things may be progressing. I’m not sure where you’re from but you need clearer guidance than this. ‘Not explaining much’ isn’t a reliable long term option.
I am not sure which test the oncologist ran. I will give them a call and see if I can pick up my results and comb through them to see exactly which test were ran and what the results were. The only data I have is from my last several annual physicals.
When I receive my results, which test should I be on the look out for to confirm that CLL was looked at as a possible reason for the outliers on the labs?
Fortunately you found a good forum with a lot of good people that can help point you in the right direction.
You said you went to an Oncologist. Are they a Hematologist (blood doctor)? Some Oncologist’s are certified in Hematology. You want a Hematologist and if possible one that specializes in CLL.
One thing you learn early on is that since you blood levels become unbalanced you ignore percentages and pay attention to the actual levels. When you visit your Hematologist come with a list of questions so you can become more knowledgeable of your specific case. It is best to come with someone that can help remember the discussions, take notes etc.
Many people with CLL live with enlarged spleens. Mine was 12cm and normal is about 7. My Dr kept an eye on it, feeling if it stuck below my ribs and asked if it was bothering me.
As Newdawn said you need a flow cytometry test. Don’t try to diagnose yourself using Dr Google. Make sure you sign up for a MyCare account through your Doctor so you can receive test results and communicate with them.
Dave, just to clarify something....a normal spleen usually spans about 11 cm (4.3 inches) vertically in its longest dimension. Mine was 20cm at its largest.
Not hijacking thread, just an aside!). I was told my spleen was nearly 8’’ this year, which surprised me. Then I was told it had been that size for 6 years. Rather surprised!
I just called and got referred to the medical records dept. Looks like it will be about 5-7 days before I see anything. He just said "enlarged" didn't specify the size as compared to normal as you mentioned above which would have been helpful.
I'm trying not to self diagnose. Just wanting some answers.
I just got off the phone with one of the nurses and I found out that the flow cytometry wasn't performed when I went in. This is frustrating because it seems like to me with the 3 symptoms I have going on this would have been one of the fundamental things to do. I also verified that the doctor is a hematologist as well.
So, considering an appointment with the hematologist will be about 3 months out is this a test that I can ask my PCP to order?
Also, I got the measurements for my spleen and they are 12.8cm x 5.9cm (slightly enlarged).
I was diagnosed a year ago by a local hematologist/oncologist who is a very nice guy, well recommended. However, though he ordered all the right tests, including the flow cytometry and FISH, giving a full profile, I've discovered that it's important to find a CLL specialist. My oncologist is very open to this search, as he acknowledges that he doesn't see so many CLL cases, and it's not his specialty, and the field of CLL treatments is changing very rapidly in a good way... I'm now in a clinical trial (for people who are not being treated yet) through NIH in Bethesda, Maryland, and soon signing up to go to the Wilmot Center in Rochester, NY, about an hour from home.
This Health Unlocked site is wonderful and it's administered by folks who are full of good information without over-stepping, and they provide great references to link for further information. They often refer to the importance of getting an expert opinion. If you live in California, you can't be too far from very knowledgeable folks... The CLL Society has an expert access program that you may qualify for:
Good luck, and welcome to this supportive "club" that we're in (that is, the one no one really wants to join . There are wonderful folks in it and the encouragement is very helpful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
. There are wonderful folks in it and the encouragement is very helpful.
New to forum, hoping for advice. 
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