Newly diagnosed with CLL

[Nour80Leen2011]

Hi everyone, I am 47 years old I was diagnosed last April will CLL my WBC is around 60,000 with few swollen lymph nodes and slight enlargement in spleen, but I don't complain from anything else.

I saw two doctors one said that I should be in W&W stage and the other said that I should start treatment soon and I am confused and worried.

Please help me, what to do?

Thank you & kind regards,

Firas

[AussieNeil Administrator]

Welcome to our community Firas,

From what you have posted, you don't appear to have any of the triggers for starting treatment. However it would be most instructive to ask the doctor who said you should start treatment for the reason(s) and compare with the official guidelines. This post is a good place to start:

healthunlocked.com/cllsuppo...

With CLL being relatively rare, It certainly pays to seek the opinion of a specialist that sees plenty of CLL patients. If you can't easily get to see a recognised CLL specialist, that's generally a haematologist who specialises in blood cancers.

If you share where you live in a separate locked post, you may get recommendations about CLL specialists from members near you.

Neil

[Nour80Leen2011 in reply to AussieNeil]

Thanks a lot for your reply, I am going to seek more professional opinions from other doctors

[Newdawn Administrator]

A warm welcome to you Firas on your first post. I’m sorry it finds you confused about whether treatment is now necessary for you.

There are clinical guidelines to guide the need for CLL treatment and without specifics, it would be impossible to know if you’ve reached them. As you’ve been diagnosed barely a year, it could well be that your Absolute Lymphoycte Count has doubled in 6 months and once this happens over 30, treatment discussions can begin. However, this is only one indicator and it’s not written in clinical stone. Your platelet levels, RBC/Haemoglobin etc. are also key indicators of disease aggression as well as the size of your nodes and spleen and whether they are impacting adversely on organs and general functioning.

You sound to be reasonably well and constitional symptoms like fatigue, constant infections, night sweats, weight loss are clearly not an issue for you.

It would interest me to know the rationale for the differing medical opinion and whether either of the doctors are CLL specialists. However please restrict your post to the community if you do go into any more detailed information.

Have you had a FISH test done yet and has there been a discussion on the type of treatment being suggested?

To set this in comparative context, I’ve been diagnosed 6 yrs and my ALC is much higher than yours. I have swollen lymph nodes in the neck and chin area and my spleen is nearing double the size it should be. However, my haematologist is continuing to monitor and treatment has not yet been suggested. I am however seeking a second opinion.

Where we differ is I’m older and my WBC/ALC progression has not been as rapid as yours. It could be the level of progression that is prompting treatment suggestions.

Has a reason been given for the need for immediate treatment because even with limited information, it doesn’t sound pressing given the details you’ve given. You also need to be psychologically prepared for treatment and to be absolutely confident in the medical direction you’re receiving.

(Typing same time as AussieNeil 😊)

Best wishes,

Newdawn

[Nour80Leen2011 in reply to Newdawn]

Thanks a lot for your reply, I am going to seek more professional opinions from other doctors

[Family2017 in reply to Newdawn]

Newdawn, I always read yours and AussieNeil's replies. Thank you for being so informative. However, I don't recall you describing your CLL condition there again I could have missed a post where you did inform about your symptoms. I have been diagnosed 2 years ago for myself with moderate WBC and moderate spleen enlarged I was recommended for treatment within a span of 6 months I guess due to the increase in the white blood cell count doubling from 17 to 30. I know every one is different but from my own research w/ wbc of 60 and swollen lymph nods treatment should be soon. Not claiming I more than you all, but from my 1st Onc he was no hurry and get treated so, got a second opinion with an Onc and he recommended treatment with in a months time.

[Nour80Leen2011 in reply to Family2017]

Thanks dear

[Jacksc06]

Hello Firas. Welcome to the family. It is indeed a shock when first diagnosed, My advice Stay calm, eat healthily, exercise as best you can & trust your medical team. I have catalogued my journey from diagnosis to present day. Please feel free to browse - Hope it helps. Best wishes.

[AdrianUK in reply to Jacksc06]

I think you need to Build a medical team you can trust. Get reviewed by a true cll specialist if treatment looks like it might be necessary. Ironically one of the things they often do is say it’s not yet time to treat when less specialist people think it is.

[Nour80Leen2011 in reply to AdrianUK]

Thanks a lot

[Nour80Leen2011 in reply to Jacksc06]

Thanks a lot

[TimHB]

See CLL SPECIALISTS, not just hematological-oncologist generalists. I had neck pain. My primary care doc said it was a viral infection. My ENT said it was bone degeneration. Then a hematological oncologist found swollen lymph nodes and diagnosed CLL. He said I was Stage 0, "probably" mutated and we'd W&W. Then I got on a plane and saw the top CLL specialists in the country in Columbus, Boston and San Diego and found I was in fact Stage II UNmutated and needed immediate treatment and am now in a clinical trial. And I was only diagnosed 4 months ago. A diagnoais is part art, not all science, and every specialist has their own preferred tests. This is your life. Take control.

[Nour80Leen2011 in reply to TimHB]

Thanks alot

[TimHB in reply to Nour80Leen2011]

Also - keep in mind that at 47 you are very young for CLL. This usually strikes people in their 70s. (I was diagnosed at 60 and the docs call me "young".) Once you start treatment, you will need to repeat it every few years for the rest of your life. Each time it becomes less effective, so the later you start treatment the better. This is where "Watch & Wait" is a viable course of action as frustrating as it sounds. (Unless, of course, your markers call for immediate treatment like mine did.) Discuss this with CLL specialists.

[Nour80Leen2011 in reply to TimHB]

Thanks dear I will keep this in mind when I discuss my case with the doctor

[jijic in reply to TimHB]

Not always true though! FCR with young, fit mutated patients is having incredible long-term results, say the specialists I've spoken with recently (I'm holding out hope, being even younger than Firas here!)

[TimHB in reply to jijic]

I stand corrected. But all the more reason to consult a specialist and not just an online forum. And to get a FISH test done to know your mutation status.

[Family2017 in reply to TimHB]

Well put TimHB. I don't recall ever having all information given to me if I was mutated or UNmutated. Im looking to get further medical assistance and a CLL specialist. You mention San Diego i live in California. Are you able to give me the name of the Specialist.

Thank you.

[TimHB in reply to Family2017]

I see Dr. Michael Choi in Thomas Kipps' group. Go to the CLL Society website for a list of CLL specialists nationwide.

[Family2017 in reply to TimHB]

Thank you for the information. Its a journey we all travel, but different paths. My hope is you get the best treatment and results to last forever.

[lankisterguy Volunteer in reply to Family2017]

cllsociety.org/toolbox/cll-...

California

Januario E. Castro, MD, UCSD Moores Cancer Center, San Diego

doctors.ucsd.edu/details/11382

Michael Choi, MD, UCSD Moores Cancer Center, San Diego

doctors.ucsd.edu/details/11...

Steven Coutre, MD, Stanford University, Stanford

Robert W. Decker, MD, Cedars-Sinai, Tower Hematology & Oncology, Beverly Hills

Herbert Aaron Eradat, MD, UCLA, Los Angeles

Preston Gable, MD, Naval Medical Center San Diego, San Diego

Thomas Kipps, MD, Moores Cancer Center, La Jolla

profiles.ucsd.edu/thomas.kipps

Susan O’Brien, MD, at UC Irvine, Orange

Lauren Pinter-Brown, MD, UC Irvine, Orange

Steven T. Rosen, MD, City of Hope, Duarte

Tanya Siddiqi, MD, City of Hope, Duarte

Len

[Family2017 in reply to lankisterguy]

Great. Thank you so kindly. I just told my son I'm going to research for a CLL Specialist. I'm dealing with this condition head on. Thanks again

[Elizabetha]

Welcome to the CLL Club! No one asked us to join 😢however what a supportive and knowledgeable group of people.

Hope that you follow the excellent advice already offered and that your journey with CLL is slow and we'll managed.

Best wishes.

[Nour80Leen2011 in reply to Elizabetha]

Thanks a lot

[jijic]

Hi Firas,

As everyone else has said, see a specialist. Have you had a FISH test done yet? My specialist said that's particularly important for younger patients (I'm one too), since there's now increasing ability to map out potential treatment from the start knowing all of the markers.

[Nour80Leen2011 in reply to jijic]

Thanks dear I actually did a Fish test and waiting with fear for the result then I am going to consult a couple of specialists

[DrLV]

You have lots of options today. You need to be a proactive patient. The best advice is to see a CLL specialist and to have a FISH test done to find out the category of your disease.

I know of people who have 13p deletion and had FCR that lasted 20 years. That was the gold standard at the time I was diagnosed in 2009.

The FISH test showed that I was one of the 2% who had 17p deletion (high risk). That means I was chemo-resistant and FCR only had a 5% chance of working and would only give me a year. If I had undergone treatment without knowing this, it would not have helped me.

I got in a clinical trial with ibrutinib (aka IMBRUVICA) in 2012. I have been in clinical complete remission for several years. Researchers found out that because ibrutinib was my frontline treatment, I have been doing so good.

Hang in there. You have a wonderful community of survivors who care about you.

La Verne

[Nour80Leen2011 in reply to DrLV]

Thanks dear for your warm reply and for your precious words.

[Lola69 in reply to DrLV]

I did FCR in February 2014. I don’t have 17P deletion I am mutated with all good markers and I still relapsed from FCR. I don’t believe in markers anymore.

[Joffre1]

Hi Nour80leen,

Not sure whether this is appropraite, I too have CLL dx Jan. 2016 with ALC 25 now 70 and slowly increasing. My Oncol says FCR likely in the future although I am 72years.

My daughter was dx with breast cancer 4 days before Christmas just gone. She underwnt a double masectomy in Jan.2018 and has completed 10 weekly chemo treatments and is now on hercepton.

She used the "cold cap" and did not lose her hair.

I wonder whether this cold cap has been used with FCR ?

Regards and good luck.

Joffre

[AussieNeil Administrator in reply to Joffre1]

FCR can cause hair thinning, but not hair loss.

[Nour80Leen2011 in reply to AussieNeil]

Thanks dear but mv hair is already thin.

[Family2017 in reply to AussieNeil]

My treatments with BR no hair loss. BTW...I don't see a lot of post with BR treatment only FCR. I'm wondering did I get the right one. However, been told I'm in Hematological remission. Have ONC appointment June 7th. Have lots of educated questions for Dr. thanks to this site. Especially regarding if I had a FISH test. I will let you know my outcome.

Thanks to all.

[Nour80Leen2011 in reply to Family2017]

Thanks dear

[Lola69 in reply to AussieNeil]

Have u seen my hair?? I wish FCR had thinned it!! I have a mop!

[Lola69 in reply to Joffre1]

FCR did not make me lose my hair. I was researching cold caps. Apparently they r not good to use as it prevents the chemo from going into the whole body including the scalp.

[AussieNeil Administrator in reply to Lola69]

Only the scalp I would think - reducing uptake of the chemo by the chilled out hair follicles...

[Hoffy]

Cll Society Web site can help,

Be well,

Hoffy