Not yet diagnosed

[Pat351v]

I had a physical in May 2018 and wbc was 29.1....5 weeks later wbc is 42.6. Platelets normal...rbc normal....dr feels its cll. I see a hematologist on Aug 7th...pretty anxious. What can i expect? Btw my son at 29 has cll

[AdrianUK]

Take a few deep breaths Pat. This period of uncertainty over a possible diagnosis is really tough. We have all been there. And it sucks! Hang on to a few thoughts

1. It might not even be CLL so try not to run away with yourself (that will be hard of course!)

2. Even if it is CLL you may not need for years or even never.

3. Even if you do need treatment the treatments work really well now and you should expect a normal lifespan.

[Pat351v in reply to AdrianUK]

Thank you

[Hidden]

Pat,

The Hematologist should perform two tests (if you have not already had any of them) The first is a Flow Cytometry and the second a FISH Panel. That is how CLL is diagnosed and which version you have.

Your jump of 29K to 41K is large but not unheard of. I was diagnosed April 2017 with WBC around 25K and ALC about 20. I was stable until one month last winter when in a single month my WBC jumped from 25K to 43K and my ALC went from 23 to 32. My Hematologist put me on monthly blood work right then...but since then everything has been fine...even a slightly better each month.

The important thing to watch for is trends, not specific points in time and those results. I am guessing if your son has CLL you know about this disease and understand it is a chronic sort of thing....getting worse over time. Usually a lot of time....sometimes quicker than others though. 29 is extremely young to be Dx with CLL although, again, not unheard of.

I am a HUGE advocate though of finding a doctor you are comfortable with who listens to you works with you. ...both a PCP and a Hematologist. My first Hematologist appointment after hearing Looookemia lasted 5 minutes and I never went back to her again...even though she is supposedly great. I found one I am super happy with and have seen her for more than a year...I see her every 3 months. Oh, I am 52, male, and WBC about 38K and ALC was 30 at last test...I go again this week...probably get it done tomorrow and get it out of the way.

You need to consider getting vaccines now, not later. No live vaccines though. A good one I just got is Shringrex, it is for shingles...which can come get CLL people. It is two shots...I had the first and get the second this month. There are also Pnemonia, flu and others....I don't have the list in front of me. Finally, I learned here you should get a screening for skin cancer every 6 months...no one told me that....I go in October for my first one. There are other things...but you have time to learn.

Scott USA/Maine

[Pat351v in reply to Hidden]

Thank you so much. I see the ups and downs with my son.

[AussieNeil Administrator]

Further to the good advice you have already had, IF you are diagnosed with a blood cancer, given your son has CLL, it is quite probable that you and your son have familial CLL. Another blood cancer is also possible (but less likely) with that familial factor. If you do end up with a CLL diagnosis, at least now there's a huge amount of progress being made with safer, more effective drugs being trialled and approved.

CLL being a chronic condition, if you do end up being diagnosed with CLL, expect to be placed on Watch and Wait, so your hematologist can monitor you to determine how stable your illness is. Repeat appointments and blood monitoring tests will be adjusted accordingly.

You haven't shared which country you are from. I'm guessing the USA from your spelling of hematologist. If you live elsewhere, don't expect to have a FISH test. Results can change over time, so in countries with universal health care, FISH testing is not done until treatment is required.

Neil

[Pat351v]

Neil i am in the USA. Im just anxious. I feel fine. The Hematologist i will see next week is highly recommended.

[MsLockYourPosts Passed Volunteer]

Pat - Deep breathing! There are currently three different blood cancers in my extended family. All of us are doing well. As Neil said there could be a familial component, but we are a very large family, and no one else has a hint of a problem.

Try to take things one step at a time. Will you have labs, especially Flow Cytometry, done before the appointment? I would want those results available at the appointment if possible, as that is the test that will tell you if you do have CLL.

I recommend taking a recording device to appointments or using a phone app. Test it first! Even though you have more understanding than most because of your son's diagnosis, it's different listening when you are the patient, not family or the caregiver. You will be better able to be engaged in the conversation with your doctor if you are not trying to write everything down. And it's easy to have the brain just shut down when you've heard enough. Being able to go home and listen to things again is very helpful.

Please let us know how your appointment goes. If you are posting specifics about your report, or your son's case, you might want to "lock" future posts so they don't go to google, etc. At the very bottom of the post change the default to community. You can edit this post to lock it, also, if you wish to. On your original post click on the v next to more, then edit, then scroll to the bottom to change the setting.

[Pat351v in reply to MsLockYourPosts]

Thank you for the advice. I was not told to have blood work done prior to the appt. My dr felt a rush to get me in...when the hematologist called she felt there was no rush...i had a bit of a relief from that but now anxious as the date approaches