New SLL/CLL diagnosis: I was just diagnosed with... - CLL Support

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New SLL/CLL diagnosis

peacethruthestorm profile image

I was just diagnosed with SLL/CLL at age 62. This was diagnosed incidentally when I was admitted for acute sigmoidal diverticulitis. A flow cytometry was done when CT scan revealed mild splenomegaly and lymphadenopathy. My WBC was 31 and ALC 20, normal hgb and platelets. Flow cytometry was done and identified mature B cell lymphoma/leukemia. Flow cytometry was negative for CD5, CD10 and CD38. I am asymptomatic but very anxious as this diagnosis came out of the blue. From what I understand CD5 negative is considered atypical for CLL and I wondered what the implication for this might be? I have not had FISH testing and do not know my IGHV status, my doctor deferring this until my next visit in 3 months. I am scheduled for PET scan in 3 months to rule out richter's transformation (though she said she has a low suspicion for this) and she plans to repeat a flow cytometry at that time to confirm whether atypical CLL or different low grade B cell lymphoma. I am being seen at the University of Michigan and am looking into getting a second opinion somewhere. MD Anderson in Houston is one consideration or I was considering Dr. Finn in Nashville, TN. Does anyone have insight into CD5 negative CLL and is there someone you would recommend for a 2nd opinion? Thank you

13 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi peacethruthestorm,-

Welcome to the club none of us wanted to join.

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You may be able to get a 2nd opinion for free and without leaving your home.

Click this link: cllsociety.org/cll-society-...

cllsociety.org/2019-expert-...

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We have several members that have had similar experiences, where they were first diagnosed by a FLOW test that had a few non standard results but later testing suggested MZL (Marginal Zone Lymphoma) or FL (Follicular Lymphoma)

This posting from a UK member last week might be useful for you.

healthunlocked.com/cllsuppo...

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As I suggested in the earler post: For the most part, in the event it later is determined to be one those other indolent NHLs, the watch & wait period is the same, and treatments are the same or very similar, so the difference between being 98% certain and 100% certain does not matter.

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In the interim you may want to begin reading the Pinned Posts on this page, especially these:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo....

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Len

peacethruthestorm profile image
peacethruthestorm in reply to lankisterguy

Thank you so much. Very much appreciated.

neurodervish profile image
neurodervish in reply to lankisterguy

That is such wonderful info! I lost count of how many times I watched Dr John Pagel "Not your Father's CLL" video. 🧡

mantana profile image
mantana

I am "atypical" and negative for CD5. I'm still W&W.

I was diagnosed with CLL at the end of 2019, with my WBC at 14 (lymphocyte around 8.5).

In April 2020 it grew to 28.31 WBC (18.83 lymphocytes) and my hematologist said that if it continues like this, my treatment time might be nearing.

In December my 2020 WBC was 7.97 (lymphocytes: 3.03) and my hematologist (a different one - I moved to a different country) was confused about it ("it should go up with CLL, not down") and said they couldn't detect CLL -- and the findings were not compatible with any other hematological disease.

On my visit in June 2021 my WBC was above 12 (with lymphocytes below 5) which prompted my hematologist to put me in "some blood disease" category. Interestingly, just 2 weeks before, I was showing WBC below 10, which would put me in "kind of healthy guy" category, according to my hematologist.

My spleen is enlarged, lymph nodes are normal, my platelets are low (but stable for the past 2 years), my hemoglobin levels are very slightly dropping from blood test to blood test (but, are still marginally within the "normal" range - to add some confusion, I'm vegetarian, which could contribute towards low-but-within-norm hemoglobin levels).

This is very confusing for both me and my hematologist - while I'm still labeled "CLL" in my medical documentation, he says he can't give me a diagnosis.

As for CD5 negativity - it happens in around 5% of people with CLL, and some older research papers suggests the outcomes are better, some suggest the outcomes are worse. I suppose with new treatments it doesn't really matter much.

peacethruthestorm profile image
peacethruthestorm in reply to mantana

Thank you for the information

Ellieoak profile image
Ellieoak

Yes CLL society has a no cost 2nd opinion. I went to Mayo for mine but MD Anderson is good too. Your wbc will go up and down. I went into watch and wait for 9 yrs. This disease moves very slowly. Relax and breathe! Eat right and exercise.

I was diagnosed in 2002. 11q&13q deleation mutated. I’ve had Bendamustine, Imbruvica, and now am on Venteclax. Stay safe, Anna

peacethruthestorm profile image
peacethruthestorm in reply to Ellieoak

Thank you Anna

Ibru profile image
Ibru

My husband sees Dr. Flinn. He has been on ibrutinib as his first and only treatment for 7+ years and doing extremely well.

peacethruthestorm profile image
peacethruthestorm in reply to Ibru

Thank you.

secondwind profile image
secondwind

Hi Peace thru the storm... I am 62 too - I was diagnosed with CLL in 2018, and been watching and waiting for a few years. My WBC has been up and down, as high as 38 and as low as 16. I don't know about you - but when someone tells me I have cancer and I should just sit back and wait to see what happens.... I just can't do that - had to do something.. I used to run to blow off steam so I got serious and figured this was my way to fight back. Got on the tread mill and worked my up to 5 mile runs.. Not fast, slow and steady, the checkup after I had been running 6 months WBC dropped by 10 - so a nice little reward for all those miles on the treadmill.. I wish you the best on your journey thru this - and it sucks to have cancer, but we're the lucky ones... When my mom was diagnosed with ovarian cancer, she was in surgery the next day, chemo and radiation a few weeks later.. died after a 6 year bout - more surgeries and treatments.. yeah - believe it or not, we're the lucky cancer patients..

peacethruthestorm profile image
peacethruthestorm in reply to secondwind

Hi secondwind....I appreciate your note so much. Hearing that you used exercise to help manage that helpless feeling we all must have at different times encourages me. I am a "doer" so, needless to say, waiting and watching doesn't fit my style either. I have always been an active person, avid runner, spinning, swimming, triathlons, but hurt my back in 2014 while completing my Nurse Practitioner education and have been plagued with chronic injuries since. I walk ~4 miles daily and want to add swimming and some light strength training in too.... to keep up my strength and for my mental health. Keeping a positive outlook and setting my mind upward instead of down is the biggest challenge right now. It has gotten better over the past few weeks, but still wonder what the future will look like and how much future I will actually have. Of course, time feels more precious once cancer has invited itself to your table. Then I remember that no one, not even those who don't have cancer know what tomorrow may bring and that none of us are guaranteed tomorrow. I have a strong faith in God and that is where I find peace through life's storms. I have 5 children and 12 beautiful grandchildren, so know that I have already been blessed beyond measure. I guess I can say that I feel grateful to have the "good" cancer rather than something like what your mother faced. My mother died of uterine cancer 23 years ago. Her cancer was particularly aggressive and she died 6 months later following surgery and chemo. Thank you again for your note. All the best to you!

SantaZia profile image
SantaZia

I was diagnosis recently with CLL however I had both the FISH test and I know my IGHV status. I would suggest you ask your doctor to do the tests now. Also schedule an appointment with a university cancer center that is close to you. I did that and was diagnosed with stage 2-3 and watch and wait. I also have an appointment with MD Anderson that I may cancel after I get my results from a CT scan of my breasts that was order. You want as many questions answered as soon as you can for your own piece of mind. My hematologist/oncologist at the UNM said at 71.5 I would die with CLL not from it. That provided me a little peace. Sorry you are in this with us.

peacethruthestorm profile image
peacethruthestorm in reply to SantaZia

Thank you so much

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