My local oncologist has been helpful, but it’s time to identify my CLL specialist.
I’m so looking forward to a first meet tomorrow…
What should I ask?
Thank you so much kind community ❤️
I really value your thoughts and ideas and appreciate each and everyone one of you very, very much.
MotherofDragonsUSA, sorry for this late reply to your request. There have been several posts in the past addressing your question. I'll provide the links to posts that might be helpful:
What to ask The Haematologist healthunlocked.com/cllsuppo...
So what should I ask my new specialist?healthunlocked.com/cllsuppo...
I hope that your appointment tomorrow goes well. Please let us know how things go.
SO incredibly helpful. Thank you for taking the time to help me gardening-girl! You rock! ❤️
From the prior posts kindly shared & a kind DM sent by another, here is evolving question list … but please share more if you have other:
1-inquire about prognosis markers
(I don’t know if my local oncologist looked at this)
2-share additional health challenges
3-inquire protocol in discussing data, how involved should/I will she be in helping me interpret data
4-get in a best physical health as possible
5-ensure my local team (primary & oncologist) are awesome and in the know; ready to support me w hard decisions.
Also ask:
6-when should I start treatment and why
7-what should my treatment be and why
8-what are other treatment options and walk me through each one and why the one you suggest is best
9-what treatment would the Dr choose for himself if he were me?
10- what is the side effect profile for the treatment I suggested I take, what do you typically see and what is the range of results that can be expected?
What else?
Thank you all so much!
I would also ask about clinical trial possibilities. One of the advantages of a CLL specialist is they have better visibility into early-stage trials that local oncologists might not think to look for. It is likely very early in the process, but better to be on the same page with your CLL specialist about your interest and willingness to participate in such trials.
Just as you are sizing up your specialist, he/she is sizing you up as well -- to provide effective care, they need to understand things like your risk tolerance, your support network, your insurance and employment situation, and your likely adherence to protocol and concerns about side effects.
Good luck today. My BP was up 30 points for that meeting.
Great handle, BTW. Am working through Season 6 on my stationary bike rides.
scryer99, thank you! Excellent advice and super helpful. ❤️
Thank you Jammin_Me!
This is very helpful. I am a former science & history documentary researcher, so for example, with covid & the immune compromised (including CLL) I am ‘in deep’ with details, studies, and that info and it’s challenging from a mental health perspective bc I feel like I’m in the upside down world (except for amazing folks still advocating for us like Eric Topel and more) as it relates to the data realities and ongoing threat.
Yet, when I read here so many articulate and very well informed CLL patients full of specific lab work knowledge about CLL itself; I have no idea what it means, or if I should go there, or do as a friend’s Mom who has been living with and treated for CLL just told me to ‘put my whole heart in my specialist’s hands, and let it go for peace in my heart.’ Need to find a Happy Medium I suspect, but do I need a binder, highlighting trends in blood work, deep dive? Or can I just ask good questions rely on my CLL specialist (Columbia U/NY Presbyterian) to track and chart my course and go from there?
Thank you again for listening ❤️
are you going to Dr.Lamanna?
A very good list!
I found it helpful to ask two additional items:
1) What, if anything, do you suggest to slow the progression of my CLL.
I was told to exercise to help my immune system.
2) What, if anything, should I avoid now that I have CLL?
I was told to be careful of supplements, other than Vitamin D if you are low, as the supplements may help the cancer cells more than you.
Patti
Hi CycleWonder! Excellent adds to my ask list. Thank you for taking the time to share. ❤️
I was tolð that as well and didnt take supplements. Then it was vitamin D and then cranberry to help prevent uti's. Then a vitamin supplement containing B12. I hope they dont do harm. Anne uk
❤️❤️❤️ thank you. Beautifully said.
I hope you have the answers you need. Hopefully your numbers are low and you feel well. I have hadcll for 22 years and if you are happy with the consultant she is right.Worry if you need to but dont let it take away your pleasure in life. Trust your consultant. Treatments are so much better . Take care, Anne uk
MoD - You are the …MotherofDragons (that’s gotta be THE best name I’ve ever seen on this forum!)… anyways, why not ask this one “mother of all questions”…
“I have cancer (CLL), so what’s my life expectancy?” (Aka, in layman’s lingo… “at what age might I expect to live to with this cancer?”).
You’ll get the big answer (guess) right from the get go … that might be upmost important “assuming” you are curious… or anxious (understandably so). If not, well no need to ask it. But please do not Google it… that information is out of date, erroneous.
The previous lists provided are awesome, the suggested questions all have great merits. So you have lots of ammo to chose from.
Good luck with your first visit and wishing you great feedback.
Cheers 😀
Great questions. My recommendation is to take someone with you or at least record your meeting. Basically initially we get an information overload. Many of the questions cannot be answered at the first appointment since you will be having several tests to determine what your personal CLL is before you can dive into where you will be with treatments. I find my portal is an invaluable resource. Trends of your bloodwork will tell you many of the questions to ask as well as any symptom changes. I went back and looked at my bloodwork from annual CBC and determined my CLL stated two years before it was diagnosed. Hopefully you are one of the lucky ones who never need treatment.
Just to amplify scryer99 point about clinal trials: I would want to know how much will this cost? Does your health care plan pay or do you pay. Clinical trials are a blessing for CLL patients because there is usually no out-of-pocket money involved. A good CLL specialist should be able to help guide you through that process.
For starters, one question might be - "What therapy(s) are yielding the best outcomes for patients that have a sub type profile and prognostic indicators like mine?".
Also - "How do those therapies compare in tolerability and side affect category?".
JM
CLL specialist in Scotland? 
What to do?
CLL Specialist
CLL Specialist in California
