New Diagnosis - Everything Normal except cytology

[Keggs2020]

Just diagnosed this month, age 49. My lymphocytes are elevated and my cytology shows “atypical” CLL. All my other labs were good and I am mutated with normal FISH results. My doc says this is all good but I feel like I’m waiting for the other shoe to drop. Like someone is going to come to me and say, “well, there is the one other terrible thing we found….”. I want to relish in the good news but how do you not wonder if there’s more bad news coming? My docs are at Mayo and are CLL specialists who also treat my mom, so I do trust them, but some days I question the process.

[baq724]

Hello- I was 46 when diagnosed and 42 when things started moving toward CLL. I am 51 now and still with no treatment. Being mutated makes things move a little slower and sometimes at a snail's pace. My best advice to you is to stay off of google. So many new treatments out there if you ever need it. Most of the information published even 5 years ago is obsolete. This is the best place to come for support and answers. If someone here can't answer your question, they will direct you to a reliable source. Of course it is a shock for you, but trust your doctor. If you don't have a "specialist" get one. They only see CLL patients and can work with your local doc. Stay active and exercise...it can help with your mindset as well as fatigue. It took me awhile to believe this....but "we'll be ok"!! All the best.

[cllady01 Former Volunteer]

Keggs, you sound normal for a newly diagnosed CLL patient.

We have to learn what we should not worry about and what we should worry about. The first 3 or 4 visits to the Dr. for check ups during Watch and Wait (I have been in W&W for 21 years and have not been treated yet. That most worrying day for me is September 8 when I will have my first treatment.

I worried as you do when first diagnosed. I had to learn to not worry until I have something to worry about--now I know that is a bit simplistic, and that I have had a loooong time to practice, so I am not saying "stop that worrying".

What I want to say is the way to do that exercise of not worrying is to get to know what CLL is and what you can do to prepare yourself to be as healthy as you can be for whatever is ahead.

You may already eat healthily and exercise regularly, but if not, you now have some incentive to do so in order to be your best when and if you ever need treatment.

The following is a compilation of articles/posts from this site's members, and good advise for getting all your vaccinations (knowing what are vaccinations you CAN get and ones you need to avoid), and the insight of members in regard to how they are coping and finding there is less fear and worry as they become acclimated to the routine of visiting their CLL Dr.

Also, educating yourself, helps you to be an advocate for yourself, as well as one who supports other members of our site and any persons your meet who may need some information you have garnered from your readings and participation in conversations.

So, it kinda like "back to school" time but without a formal teacher. You will be surprised what you will be able to learn in a short time because you are interested in what you are studying.

Check out this long and involved set of helps compiled for new members. Esp. read the

"CLL for DUMMIES" and do ask any questions you have as you work through the different parts of the post:

healthunlocked.com/cllsuppo...

[Phil4-13 in reply to cllady01]

cllady01, your response to Keggs is even helpful to me. Thank you. Sandra🙂

[lankisterguy Volunteer]

Hi Keggs2020.

I suspect that you are reading things into the test results that are not necessarily the way

your Cll expert interprets them.

There are several "med speak" terms in Cll that seem counterintuitive.

First of all, most Cll is heterogeneous, meaning different patients have very different

behaving ClL. And those widely varying behaviours are not predictable with any tests or

characteristics we currently can measure.

One example is having FISH "normal" - that just means you don't have one of the 4 most

common set of genetic deletions in the DNA of the Cll cancer cells. Having a 13q deletion

would be better than being "normal". But being normal is better than having a 17p deletion.

You should ask your doctor to explain the "atypical" Cll comment

I recall some patients that got a slightly odd response in the FLOW test that helps identify

whether your cancer is Cll or another NHl like Folicular or Mantle Cell lymphoma.

That test looks for 5 different chemical markers on the surface of some of your white blood

cells. If (like my results) one of those 5 markers gives a stronger or weaker signal than most

other patients, but the others match, then you likely have Cll and not another lymphoma.

But the most important point is that being different is not always bad, sometimes it is good.

The best way to figure that out is to observe your blood results and symptoms over a long

time (years) and if theychange slowly, that is very good.

Len

[Phil4-13]

Glad you posted on this forum. Please relax your concerns. You are in a highly rated medical facility and you have the wonderful support of this community. Sandra🙂

[morepork]

The two things that triggered a reaction when I was first diagnosed with CLL, a loooong time ago now, were the words 'cancer' and also 'not curable'. Thank goodness for time, treatment progression, CLL forums and their more knowledgeable folk. Best wishes.

[LeoPa in reply to morepork]

I think of life as not being curable either. One day we will all have to return home. But let's hope that our father will let us fool around in the kindergarten for a lot longer before he decides to call us in 😄

[Hidden in reply to LeoPa]

lol!!!!

[Hidden]

All completely normal concerns. It's how you handle them that will work in your favor. As we all know by now, we were never guaranteed "perfect vessels" for this "journey" of life. But you will find your balance & continue on & I hope that arrives for you sooner than later. Be good to yourself. So many amazing people on here with super advice. Be well 🍂🍁🌾✨☀🙂