So what should I ask my new specialist?

[scryer99]

Am a 50s male diagnosed with CLL less than one year ago.

Recently, ALC doubling rate has progressed to <3 months, up to 48 k/uL recently. Platelets have dropped to 90s so not a health issue yet. Absolute monocytes recently up to 2.6k/uL, well above 1.0 nominal. Fatigue getting worse but no other symptoms yet with lymph or spleen. CD38 marker, but no CD45. ZAP70 “equivocal”.

My guess is given that set of symptoms I am heading for treatment soon. Doubling rate, thrombocytopenia, markers, and now the monocytes climbing (which seems odd) all seem like legit concern points at this juncture.

I have lined up a top CLL specialist for next week. I’m assuming if treatment is recommended that we’ll do FISH, ighv etc. at that time.

Anything I haven’t thought of that I should be asking about?

[cajunjeff]

Scryer, it does sound like you are headed for treatment. Your platelet count of 90 is okay, but very much in a range of concern because if it gets much lower, bleeding could be a serious risk.

You seem to have a good handle of things. The 64 thousand dollar question for you, from my view, is when do you start to treat and what treatment do you choose.

My specific questions would be:

- when should you start treatment and why

- what should your treatment be and why

- what are your other treatment options and walk you through each one and why the one you suggest is best

- what treatment would the Dr choose for himself if he were you

- what is the side effect profile for the treatment you will take, what do you typically see and what is the range of results that can be expected

- depending on your comfort level with your doc, a final question might be does he think you should get a second opinion before treating

Generally speaking, I would seek a second opinion unless I was being treated by a top Cll specialist at a major institution. Your choice of your first treatment might be the most impt decision you make relating to your Cll. Good luck.

[scryer99 in reply to cajunjeff]

Thanks for the comprehensive rundown… it helps structure my thinking a bit. I’ll be glad to get some more specific advice — and yes, this is a top CLL doc at a major research hospital so it should complement the hematologist/oncologist I’ve been working with locally.

[LeoPa]

Kudos to you for staying on top of things! Best of luck with the treatment.

[wizzard166]

Hey Scryer

The one thing I can think of is whether or not a bone marrow biopsy is in order at this time. Of course, the CLL Specialist shouldn't need you to ask anything. When I had a very short doubling time at my two-year juncture, I switched to a top CLL Specialist from having my local one be the lead. My new Specialist ran CT scans, a truckload of bloodwork involving genetic information, and then wanted a bone marrow biopsy. She said that the bone marrow biopsy is normally held off until the need for treatment is likely, and this situation might not be the case, but she wanted to be careful and ahead of the game. A bone marrow biopsy apparently can determine the extent of progression of the disease more accurately than anything else, so perhaps that test is now in order for you. If you haven't had CT scans, then of course that is essential to determine the progression of growth of the lymph nodes and their sizes.

Carl

[scryer99]

Thanks… did have a CT at initial diagnosis and it was clear. Might be time to check again though. Will add bone marrow to the list. Can’t say I’m looking forward to that but we do what we need to do, right?

[Smakwater]

scryer99,

Consider asking if a clinical trial is an option for you, and if so what is available to you.

JM