New to CLL

[rlajbsmith]

I recently was diagnosed with CLL. I'm in the watch and wait phase. I went in for a routine medical exam and my gp saw elevated white blood cell counts and sent me to a hematologist/oncologist. Now the adventure begins.

[Newdawn Administrator]

Welcome and sorry you’ve had a CLL diagnosis. You’ve found the right place for support and information however 😊My question to the newly diagnosed is do you have good medical support and how are you coping emotionally? I sense from your other responses that you’re already doing your condition ‘homework’ but it’s a psychological blow to receive this diagnosis especially at a relatively younger age and certainly if it comes accidentally by complete surprise.

Wishing you a slow and uneventful CLL ‘adventure’.

Best wishes,

Newdawn

[rlajbsmith in reply to Newdawn]

Thanks. I am doing fine right now. It was a blow for sure. My wife and I have been battling with chronic Lyme, her more than me for years. I thought my problem with fatigue was Lyme rearing its ugly head or Epstein Barr taking over, but my doctor noted that I had some elevated levels back in 2014 that were undiagnosed until now. I guess it has been going on behind my back for years.

[lankisterguy Volunteer]

Hi rlajbsmith,-

Welcome to the club we did not want to join.

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While you are waiting you may want to start reading our archives, especially the Pinned Posts like this one: healthunlocked.com/cllsuppo...

That has so many excellent links, it may take more than a few days and weeks to absorb all the information, so go back to it often.

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And also this one healthunlocked.com/cllsuppo......

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Len

[rlajbsmith in reply to lankisterguy]

Thanks. I'll do that.

[GMa27]

What state do u live in?CLLSociety.org has a list of specialists.

Specialists work at large cancer centers & do research besides seeing patients. I saw a local hematologist oncologist till I needed treatment since the center was far away. But if u live closer to a specialist, that would be best. 💕

[rlajbsmith in reply to GMa27]

I live in northern California. I recently saw a list of specialists. They are all kind of far from where I live.

[lankisterguy Volunteer in reply to rlajbsmith]

You may find my reply to another NorCal patient useful. healthunlocked.com/cllsuppo...

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And this is highly recommended as a way to get a 2nd opinion at no cost, without travel from your home cllsociety.org/cll-society-...

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And BTW- we often suggest that patients use both a local general Hem/Onc with good diagnostic skills for routine check ups (e.g.: quarterly or monthly) and have a top CLL Expert they visit once per year or less but have them available to consult in treatment selection. (e.g. a trip to Stanford from Lakeport is 3 hrs drive )

cllsociety.org/toolbox/buil...

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Len

[Fran57]

Welcome!There are lots of very clever, supportive people here and they have the answers to most questions.

Stay safe,

Fran 😷

[Jacksc06]

Welcome to the family.

[Hidden]

Stay here with everyone, you are in the right place . My husband is 1 year into his diagnosis & we are in U.S. Things have calmed down since initial phase of shock, what now, and where do we look for answers. Many treatments if necessary and this forum is priceless. I send a healing mass card in around this time of year for the forum folks. So lots of prayers and virtual hugs to you. Experience and support are priceless. Compassion, whew does it help me & then I can help my husband. Take good care~