Hi All,
I hope everyone is keeping well
I have my very first CLL specialist appointment tomorrow and I’d like to arrive prepared. Instead of remembering all the questions on the way home in the car, I’d like to gather as much info as I can on this first visit.
Do you have any recommendations as to what I should know by now?
I’ve been recently diagnosed with CLL back in Feb via blood tests, lymph node&BMB.
WBC 24 And ALC 17
Thanks in advance
Philip
Philip
I ALWAYS write my questions down before I go...sometimes weeks before...I do it as soon as I think of them..makes everything so much easier
Four big questions I would ask
You should know your mutation status from a FISH panel...
Any oddities in your Flow Cytomerty (or other tests)
What they suggest for other requirements (I just found out on this site I should be seeing a dermatologist every 6 months for a skin cancer screening...no one ever told me that)
Winning lottery numbers for next drawing...but share with me, OK..cause I told you to ask.
Scott USA/Maine
You might as well ask...who knows...maybe the whitecoats do know
Will do a Scott... thanks for the info!
I keep a small notebook labeled White Coat Interrogation near my bed (I always think of my questions before bed). It really helps me at appointments
Scott, still laughing over lottery number and White Coat Interrogation notebook. Thanks.
Ohanne
How is your FCR coming along? I hope that path you are walking has more sunshine than rain.
Scott
I like the rain though
Thanks so much! Had a brief delay because of neutropenia, but I just finished Round 3 yesterday. Other than a bit of nausea taken care of by meds, it was the easiest round so far, so I'm thankful for that. Just very tired. Slept through my treatment yesterday. Hope they didn't post drooling photos online. Best to you and your family. I know the watch and wait (and imagine) is hard.
Ohannie
Watch & Wait... FCR...pretty much the whole CLL thing is so high on the hard scale it doesn't matter...
it is like asking
A. Do you want your hand stuck in a lawn mower
B. Your foot hit with a chainsaw?"
C. A sharp stick in the eyeball
"ACK!!! I don't want any of those...is there an option D, maybe?"
Scott
Definitely hoping for a curved grade score
Yes, Option D, please! A round of Option D for us all.
Scott, you have to follow your dream of writing. You’re a natural. I look forward to your responses as much as I look forward to gaining information about CLL. You always brighten everyone’s day. I also think you should write a book for all the White Coats in training. Help them understand what we go through. Kindness, Sally
Hey Sally
Believe me...I keep trying to write the story Renee asked me too...but I dunno, there is something different about writing a story that hauls a reader in and telling a story....being here is more like telling a story...just talking....it is not that I don't sit and write, I do..alot...it just comes out dry and factual...not what I see in my head.....I signed up for a writing class next month and going to a 3 hour class next week....I had no idea that writing it would be so hard...I have told it to Renee for 25 years....there must be a writers gene I don't have....I bet it is on the 13q chromosome and was part of what got deleted in me...
Scott
Shoulda paid more attention in English class....
As always you keep us entertained. Maybe writing other short stories in the meantime will help you write the one that’s on a freight train in your head. Keep working on it. Kindness, Sally
What about a blog? I can definitely see people checking in often. And that would let you comment on whatever comes to mind on any given day.
I just saw your “winning lottery numbers comment” as I pulled out my white coat interrogation book to take down the questions. I don’t expect a favorable reply if I ask that, gotta try though lol
The best thing I did for myself was to take a recording device ( or use a phone app.). It's easy at a certain point, listening and trying to process everything, to have the brain just shut down. Being able to listen to ,,what was said again later really helps.
Would the doctor mind this?
I can see doctors being sensitive to that..
Some do. Good to ask. None of mine have. I even had one remind me to turn it on.
Best of luck to you today, Philipoc! If you have someone with you, it can be helpful. More ears on the case. Prayers for you going forward.
I have a notebook I carry along with any and all test, appointments etc. I bought a zip folder, labeled everything so that when I visit any doctor I have all test and reports. In my notebook I write down any questions in advance. I also write down things I’ve learned from this group. Good luck.
Pam
This publication is current and excellent... I suggest you read it after your appointment, and it will help clarify things.
Don't expect to understand everything. This a U.S. publication, so some things like treatments mentioned may not be available in other countries.
NCCN Patient Guide
Thanks a lot everyone. Today wasn’t bad... WBC a little higher 35 and AlC 32 Hame 14
Founds a few extra nodes that I didn’t notice but next appointment FISH panel results will be discussed, the future is in the FISH (apparently)
She praised FCR for a treatment option and there’s another 5 Medications on the way this year (non-Chemo)
Horrific CLL specialist visit ! 
Newly Diagnosed Age 49
CLL Specialist Recommendation
MD Anderson/Mayo or Peter MacCallum for treatment?
CLL SOCIETY'S ASH POSTER on our Free second opinion program plus two important papers from ASCO
