Aunt with CLL and bone marrow infiltration

[dleducALC]

My aunt was just diagnosed with CLL with bone marrow infiltration. I work for a lung cancer foundation so I am very familiar with solid tumor cancers, but CLL is new to me. Any suggestions as to best paces for treatment, questions to ask the doctors or education resources are appreciated. I have also reached out to my organization's network of doctors for advice, but I know how much knowledge can be gained by communicating with other patients.

[AussieNeil Partner Administrator]

Your Aunt has just found some great support via you and this community. Perhaps you can convince her to join?

You haven't shared where your Aunt lives, which will enable members close by to respond with suggestions. If you do so, you might want to edit your post via the 'More v' 'Edit' option to close it to this community only, giving her more privacy. You can do this by changing from the default selection (all the Internet) in answer to the question "Who can see my post?".

Here are two sites that include several lists of CLL specialists, all of which list mostly USA based specialists, but other countries are included:

cll-nhl.com/p/cllnhl-doctor...

cllsociety.org/toolbox/cll-...

You'll find plenty of good, evidence based information in this community, in particular in the Pinned Posts section: healthunlocked.com/cllsuppo... , including community gathered tips on how your Aunt can live better with CLL: healthunlocked.com/cllsuppo...

With regard to your mention of bone marrow infiltration, above 25% infiltration is normal for CLL and as it worsens, it causes the gradual drop in other blood counts which may eventually trigger the need for treatment. Some of us get to over 90% infiltration before starting treatment, but by then we're usually fairly anaemic or living with the risk of low platelet counts.

Neil

[UK-Sparky]

Welcome to the virtual community! If you and your aunt live in the UK, can I suggest cllsupport.org.uk/ Lots of info, free to register and has info on the National FLAIR trial with hospitals involved in the CLL treatment trials and doctors.

UK Sparky

[Hoffy]

Watch video's by Dr. Furman and Dr. Kipps,

They are both very good,

Kipps is my Doctor,

I saw 5 hemotologists my first year,

Hoffy,

[MsLockYourPosts Passed Volunteer]

cllsociety.org has a lot of good information. At the top of their doctors list are links to two other links - Dr. Jeff Sharman's (also above), which lists doctors in the US, but it is somewhat dated now, so check on locations of the doctors - and the ACOR list, which, like the Society list is of patient recommended doctors. The ACOR and Society lists are up dated regularly.