When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when planning treatment , and some order and use the test as a prognosis indicator . My WBC's are only 15.9 , all else was WNL (Normal ) My CD 38 marker is 20 Negative. My Kappa CD19+ was 98 Moderate , Lambda CD19+ was 2 Negative and my K/L Ratio was 49 Monoclonal. Just still trying to figure out how persistent and assertive I need to be. No I do not have a specialist and I do not live near MD Anderson . Just trying to figure out if I need to chill out on W&W or speak up and request a FISH , A IGHV and a TP53 .
Grateful for any and all input.
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Seeker090260
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The CLL Society recommends a few more tests, to learn your potential risk. I would consider adding a NOTCH-1 if possible, there is data coming out it can be an important consideration for a potentially aggressive disease.
You can send the links to your hem-onc ahead of time, to discuss at your next appointment. If it were me, I don't know if I would wait 6 months. You don't say if you have symptoms or if this was found/diagnosed secondary to an annual physical or other medical problem. In my case, I had numerous symptoms and felt acutely ill. My initial workup was thought to be ALL but it turns out I have an aggressive CLL. I would have qualified for W&W but chose not to, I felt sick. I had a BMB and my marrow was almost pure white. I assumed my other cell lines would fail soon. I had a wonderful, local hem-onc initially who did some investigation re:rare CLL and gave me good advice/treatment. A number of people here see a specialist intermittently for input, with a local doc doing monitoring/treatment.
About 2019 my WBC's starting to climb with me having little to no symptoms, other than hot flashes non stop since 2015. Jan of 2023 found another GP who was willing to ordered labs cbc, etc. Was told by my GP that my Flow Cytometry was "undiagnostic". Next came Leu/Lymph Eval. Again No real symptoms other than chronic HF's , which I contributed to my poor sleep and fatigue. The GP sent me to the oncologist who would NOT review my test with me, ,, only confirmed CLL . The Good news he says was that I had Mild Humoral immune deficiencies, and that I was at Stage 0 . Only an elevated lymphocyte count . My Gamma Globulin is low and my immunoglobulin A + M were low. All other labs were WNL (normal) . Three months ago my WBC's were on 15.9 a tad high but nothing to warrant any major concerns , As he put it, or as I interpreted it . The first visit with him , he was not willing to send me to a specialist. He ordered the test that showed the results above , then said if I wanted to see a specialist , he would consider it. I did want to seems like a paranoid PIA , so I said I would wait till my next appt with him (oncologist) which is tomorrow. Again other than the stinking HF's (which I feel my HRT for 1 1/2 years started the CLL) ,,,, I feel Ok and 90% of the days I can get my work and chores done. I think its also a manner of excepting the fact that I can't get the same work done at 62 that I did at 18 . DUH! It sounds like I am very fortunate with my level or degree of CLL , I am justing trying to see if I should push to have the Fish , Tp53 and The IGHV test done. Thank you for your time and feed back. God Bless
You need to learn about how your red blood cells, neutrophils, and platelets are trending, at a minimum. If there isn't some sort of patient portal/access, ask for email if not hard copies of labwork. Get a copy of your flow cytometry too. Are you in an HMO, do you need a referral to see a CLL Specialist at a larger facility? Even if you do it *once*, it may set your mind at ease for the next 5 years.
Show your doctor that the recommendations for testing have changed recently.. There are a few newer tests recommended to see if you are "high risk" or not. If your immune globulins are low, you already have a certain amount of immune dysfunction. It would be a good thing to learn if there are other early problems. Or potential ones, to be monitored for.
I've already partly answered your question earlier, here: healthunlocked.com/cllsuppo... with SofiaDeo concurring with my recommendation that you track trends your red blood cells (haemoglobin), neutrophils, and platelets. With respect to prognostic tests, only your IGHV mutation status is unlikely to change over time, but your FISH testing should also be done, as that's how you determine if you fall into the complex karyotype category, which is more challenging to manage. TP53 can be deferred to when you approach the need for treatment, should that eventuate.
I would say that you can by now see the value of finding a CLL specialist that visiting say once a year is doable. You also need a local specialist for ready access for times when you might need some urgent medical support and this person should be prepared to work with your CLL specialist for when they don't have the detailed CLL expertise. I gather that might be challenging to achieve with your current oncologist, but it is an arrangement that some of us have been able to achieve.
Needless to say I am confused and do not have a crystal clear picture of CLL and every thing in our bodies that apply to it. Yes I know what a CBC is , as I have been watching my WBC's increase, while No one was doing anything about it. The oncologist said Stage 0 , W&W, , hey lady your the lucky one. He said nothing about prognostic test. Then I started reading H. Unlocked. As SofiaDeo stated " Show your doctor , "the recommendations for testing have changed recently " I don't know what to show the Doctor. When a FISH test, and the words " Complex Karyotype category were never brought up by the oncologist , I walked out the door thinking no big deal. Its like one fellow said on this site , A lot of Doctors don't want to do anything until you start to get sick. Not every Doctors is willing to sit down and explain in detail a (as you said ) a very complex disease process. Yes , I will find my big girl pants tomorrow, speak up ask to have a FISH test and ask for a CLL specialist. Now I am gonna go watch the Sun Set , take some deep breaths and DeRattle myself.
It's not so much they should explain in detail, as they should explain what tests have been done, at least a brief comment on the significance, and ask if you have any questions. On top of giving you a copy of the labs when asked, if there's no Patient Portal. They aren't there to educate us per se, but some sort of comment/explanation is now the norm. And with stresses on healthcare everywhere, we need to learn about our conditions and assist in the decision making when we can. Even if seeing the docs PA/RN, if they don't have the answer to a question, it would be appropriate to either call or email the answer within a week. I know there are some places where docs don't communicate extensively, and that's fine to have that style of practice. Some patients don't mind it. I personally change docs if I can, until I get one that suits my communication preferences.
I do have copies of all my lab work and have followed and watched the WBC's increase. The differential and some of the others have not been done on a regular bases. I have been going to different sights to gain more knowledge and understanding. It was not my intention to over burden Neil , and or any one this site. With so many people , different experiences , different counties , and very different disease processes, along with a complex disease , AND unknown Terminology , Needless to say I am getting confused at times . By trending you folks mean follow and add up the numbers . For what I have been given, I have been trying to do that.
------ ( Fish test can detect genetic abnormalities associated with Cancer. A fish test also may provide additional info. to help predict a patients outcome. A NOTCH - 1 , Used as a prognostic biomarker, can help facilitate treatment , IF/ AND OR WHEN , its needed ).
This is what I wrote down to ask if this oncologist today,,,,, can you do these test . He has basically told me "I don't need them,, Because I am not showing symptoms . Well it sounds like these test will tell me if not confirm how fast my CLL will grow. He wants to go by Spleen, lymph nodes and liver size . If he is not willing to order the FISH and NOTCH - 1 , then I will be asking for a Specialist . He is an oncologist in the foothills. It should not be a battle getting the work done that would benefit your outcome and or progress. Yes your right it time for me to find some who is will to communicate with me more. I will continue to read as much as possible, but I need more help from the Doctors.
By trending, we mean look at how the numbets are changing (if at all) over time. Not adding them up. The CLL Society has a template you can download and enter your personal numbers in to.Your device/computer will need some kind of app/software allowing you to use/manipulate Excel spreadsheets. If you are missing a large number of the test slots on this template, I would agree you probably need another doctor. If for no other reason to get a CLL Specialist to oversee any recommended tests.
Especially since WBC is not really used as a "should a patient be treated" parameter. But parts of the differential (like neutrophils and platelests) may indicate treatment is needed. Your platelets could be falling to a dangerous level as your lymphocytes are rising, and a simple WBC may not show any change. You need a differential for that. Your spleen may not enlarge, your palpable easily felt lymph nodes may not enlarge. your red blood cell count may start a downward trend.
Like Snake oil in Norway, here in Ontario, Canada I was told that those test results can change over time so they are postponed until closer to treatment time.
Yes they can change over time. I had very aggressive CLL so have had 3 FISH tests before first treatment and one FISH test after first treatment and before second treatment. I was 13q deleted with increasing percentages and last FISH was 13q normal. I suspect doctors were trying to find out why my CLL was so aggressive.
I didnt think to ask the GP in Feb when I was given the dx. , and I should have ask the incologist yesterday, when they told me it would be slow growing , what are they using to determined that . My WBC's were only 15.9 in Feb. with no other symptons. I see that its the extreme changes in lab and multiple changes in symptons that can change the dx and wording to agressive. Between the GP and the oncologist , I was given very little information . I am finally being referred to a hematologist . It sounds like the True CLL specialist does not ALWAYS enter into the picture, unless a person is needing treatment.
Appreciating that CLL is a very heterogeneous illness is the key to understanding so very much about it. The best information we have about how to best diagnose and manage it is collated by international experts in CLL in iwCLL Guidelines, plus what you'll read in post updates here. Table 1 in this document basically covers what you are after: ashpublications.org/blood/a...
This document has a long history and came out of the USA's NCCN guidelines for CLL, which is updated more regularly. I've posted about this here: healthunlocked.com/cllsuppo...
As I said in the above post, "If your specialist recommends something not mentioned in this document to manage your CLL, then I would recommend you first asking why and if not satisfied with the answer, seeking a second opinion. I would suggest that there would need to be good reasons, based on recent clinical trial findings or plenty of personal experience with CLL patients, before accepting a significant departure from the joint recommendations from some of the world's best minds on CLL."
With respect to your statement, "It sounds like the True CLL specialist does not ALWAYS enter into the picture, unless a person is needing treatment.", unfortunately you'll need to initiate that process yourself for the best outcome for you. There have been a couple of studies that show that doing so adds a couple more years to your life expectancy. With a median age at diagnosis of 70 for CLL, that's a considerable improvement percentage wise. This is why there's a general recommendation by members to establish a relationship with a true CLL specialist before you need their urgent help for out of the ordinary health matters related to your CLL. This need unfortunately comes out of the heterogeneous nature of CLL!
The CLL Society has committed considerable resources to improve the education of oncologists in the USA, because surveys have shown that sub-optimal care is sadly remarkably common, particularly when it comes to when to start treatment and the treatment offered. With around 13,000 US oncologists, that's a big task, but the Test B4 Treat program seems to be having an effect: cllsociety.org/newly-diagno...
I would encourage you to seek a CLL Specialist even though you are a long way from treatment. My CLL Specialist has saved my bacon a couple of times. I still am under the guidance and care of my H/O and I trust her, but she is astute enough to consult with my CLL Specialist and GP. Well worth the time to form a complete care team. Blessings.
I was told in Sept 2009 that I had an Intermediate form of CLL/SLL Leukemia. I seen the HemOnc every 4 months that year. They drew tons of bloodwork too. I never told anyone for 5yrs. I was stage one with elevated WBC/Lymph. My WBC stayed up to 20,000 for 10yrs. I jumped from RWJ to MSK & now at Northwell. Not until 2020 Covid, my numbers & symptoms increased. Horrible Night Sweats. It was time to start Zanubrutinib but I developed a Left Pleural Effusion. 13yrs 8mos after diagnosis no treatment & then 13 days on Zanubrutinib I go to the ER with Chestpain. Starting Acalabrutinib 1X per day & monitoring it closely before I advance. Also my Lung Base Atelectasis I struggle to move air, so I need to resolve this respiratory issue first. Its a chronic illness so proper management is very important. I love this Support Group, so much useable information. #GODSPEED🙏🏾
I progressed quickly as well, though not quite as fast as you did (5 to 180 in 18 months, doubling every 3-4 months) and I have never gotten a good answer for why that might be the case. Genetic tests were all pretty standard.
Yes, one of life's big mysteries. I am not one of those people who may have had CLL for years before my diagnosis, I had complete blood testing for operation 7 month prior to diagnosis, without any signs of CLL. Blessings.
A CLL specialist will do a lot more for you than just order the proper testing, which should be done anyway. I don't live near MDA either, but I see one in Upstate NY. It is well worth the trip.
Did you get the free second opinion from CLL Society yet? If you are considering treatment, I recommend it. Also maybe join any CLL Society group near Binghamton, see who those people like.....
lol I totally understand! Maybe do the CLL Society Binghamton area local group join, many if not all the meetings are now Zoom not in person. Save the free consult until just before deciding on a treatment.
There are several great CLL specialists in Rochester- it's really not that far. And they are all very willing to work with your local doc so you don't have to travel for every appointment. My CLL specialist spent three hours with me at our first appointment. The info he gave me saved my life.
thank you again....I have thought of it and talked with hubby about it but I think he thinks it is not a big deal and I should trust the oncologist i have and that treated me for two other cancers....actually that treatment was just scans and waiting....I am free of those two only to have this one...I do like the idea of a visit to rochester and will think about it....you all are so good...thank you
Go to MD Anderson. You can go to them for annual visit & see ur local for bloodtests & emergencies. Find a local that coordinates with MD. You mentioned MD so I guess you live in Texas?
I'd suggest the same. Get the expert lined up now rather than waiting until there's symptoms and more urgency. It's important to figure out which lymphoma you have. The FLOW helps a lot with that.
My day-to-day hematologist/oncologist ordered flow cytometry, IGA/IGG, and CT baseline at disease onset when they confirmed CLL. I did not get FISH, TP53 etc. until adding in a top CLL expert.
I think my oncologist would have ordered that eventually, but once my CLL specialist saw me the full test slate was ordered immediately.
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