High white count, need advice : I just got back... - CLL Support

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High white count, need advice

jjaarons
jjaarons

I just got back from my appointment at the Moffit and my white count shot up to 178K with lymphocytes at 167K. In April my total wbc was 76 and my lymphocytes were 68. I am 13q and mutated and have had CLL since 2015. I have no new symptoms or lymph nodes. I got a steroid shot in my shoulder 2weeks ago for bursitis. Normally a steroid will increase your neutrophils but little to no effect on the lymphocytes. Any suggestions as to why the lymphocytes would shoot up so high in such a short period? Appreciate any comments.

11 Replies
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Newdawn
NewdawnAdministrator

Hi jjaarons,

Such a hike in the lymphocyte level could be indicative of an infection or underlying inflammatory condition. Interestingly your monocyte level is elevated too suggesting possible infection or inflammation. More than doubling in a 3 month period would normally start the treatment discussion. It meets the criteria for treatment.

I’ve had a steroid injection into my shoulder twice but it had no impact on my ALC as you observe. What did your specialist say or suggest?

Are they simply monitoring again soon to see if it’s a trend or a blip?

The numbers alone never dictate need to start treatment but once they start doubling over a short period, it can indicate that the CLL is ramping up and needs more careful monitoring. Your other levels look excellent and you have an excellent genetic profile.

Regards,

Newdawn

Thanks They just told me to come back in 3 months.

Newdawn
NewdawnAdministrator
in reply to jjaarons

I think the levels then will dictate outcome so best wishes that this is a temporary blip!

Newdawn

another test in a week. Insist on it , to find a trend.

Thanks. Taking to my local oncologist. Planning on a repeat soon. Looks like treatment may be on the horizon. We will see.

Could be a glitch. My levels never changed when I got cortisone shots. Have ur local hematologist repeat blood work in 2 weeks. Is Moffitt near you?

I am 4 hours from Moffitt so I only used them for second opinion. My local is 3 blocks from me!

jjaarons
jjaarons
in reply to GMa27

Me too. Moffitt is a 4 hour drive and I use them for a second opinion. Going to have a repeat soon

GMa27
GMa27
in reply to jjaarons

Was confused cuz they said to come back in 3 months. If they are just second opinion, why would you need to go back? Your local can run blood work.

💕

jjaarons
jjaarons
in reply to GMa27

Agree. Thanks

I go to Moffitt too, and live over 4 hours away. My specialist (possibly the same as yours) did not recommend treatment even when my white count was higher than your latest one. He said he did not believe in "treating just by numbers" as I was not having any other major symptoms. It was not until my hemoglobin dropped below 10 because of autoimmune hemolytic anemia that treatment was recommended. I see that your hemoglobin is within normal level, so perhaps your white count is just a "blip" from the steroid shot, or perhaps from an infection as others have mentioned. I would certainly visit your local oncologist for blood work to keep track of it to set your mind at rest, but try not to worry too much.

Although I have a local oncologist/hematologist, I still like the peace of mind my visits to Moffitt bring me. I was there at the beginning of July for a check up and was told I was doing very well on Ibrutinib and did not need to come back until January! I do not see my local person until November, unless something untoward develops.

jjaarons
jjaarons
in reply to Britam

Appreciate your thoughts. Hoping this is a blip but it did shake me up. Planning to have repeat blood work soon.

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