New clinical info from biopsy

[JerrysGirl3]

I guess this was also found. Don't know why I didn't see it. Anyone see anything interesting there ?

Thanks

Kerry

[lankisterguy Volunteer]

Hi JerrysGirl3,

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I hope that Jm954 will help us decipher that test result, since I have no medical training,

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But as I read it as you were diagnosed in the past with CLL, when you were treated in 2002 (breast) and 2012 (thyroid)

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You are concerned about the enlarged lymph nodes at your collar bone, but the results might qualify as MBL the pre cancer version of CLL, due to the ALC -4160/ ml being below the minimum 5,000 CLL cells to be considered CLL.

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There are CLL cells identified by the presence or absence of certain proteins: CD20, CD23, CD5, etc. on the surface of the suspected white blood cells.

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The FISH test found 13q deletion (34%)

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and the IGHV is unclear since it says: UnMutated (0%),

I don't understand how to interpret that comment.

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Len

[JerrysGirl3 in reply to lankisterguy]

😳 I didn't even see the "unmutated 0%" !!!! Oh Lordy... now NYP is getting worse and they just dropped to a "C hospital rating. Worse than this, radiologist was supposed to biopsy 3 nodes as per script and only did 1!!!! And neither doc, Endo who wrote the script and CLL doc, who would or should have an interest in the biopsy, have called to discuss with me. CLL doc in last conversation after CT scans, mentioned starting meds on me, particularly Zanubrutinib, which is a strong medicine. My labs have always been bizarre and I've seen them say CLL, CLL/SLL, lupus, not lupus but I've only seen the unmutated on there. So does the 0% unmutated mean he couldn't find any unmutated CLL cells so it has now morphed into mutated ? Do I really have leukemia??? With the exception of nodes I suffer from none of the other CLL side effects. Creepier and creepier. I am an enigma. You would think they would be more interested in me.....Thanks Lancaster

Kerry

[JerrysGirl3 in reply to lankisterguy]

And then the cytopathology came in and the haptopathology came in. And no one has anything to say. Endo did mention that there were abnormal lymphocytes in my red blood cells but she didn't know what that meant. Well. Neither do I. All I know is that it is not thyroid cancer and that is a good thing

[JerrysGirl3 in reply to lankisterguy]

What is the "presence of a monomorphous population of small lymphocytes with clumped chromatin and ...crushed lymphocytes....😳😳😳

[AussieNeil Partner Administrator in reply to JerrysGirl3]

monomorphous = of one form. Small lymphocytes is what you'd expect with SLL/CLL. (SLL = Small Lymphocytic Lymphoma. Cancerous B cells can vary through from small to large depending on the cancer type. It's because CLL/SLL cells are not sticky and so small, just barely larger than red blood cells, which unlike CLL/SLL cells have no nuclei/no DNA, that we can safely have very high lymphocyte counts without concern.) I presume the lymphocytes were crushed in the biopsy. They are more vulnerable than healthy B lymphocytes, which is why it's common to see the note 'smudge cells present' on blood test results with CLL.

Don't worry about the details, just concentrate on the big picture. As expected with a CLL/ SLL diagnosis, your biopsied swollen node was due to CLL/SLL, so you can now 'relax' that you don't have another health concern to add to your list.

[PoisonDwarf]

Hi JerrysGirl3,

I’m no doctor, but I have seen my own results. The B cell count of under 5000 and swollen lymph nodes suggest Small Lymphocytic Lymphoma or SLL. Doctors class CLL/SLL as the same disease. I have the SLL version & as someone here described, my upper body is the human equivalent of a pebble beach! The difference being that SLL is largely contained in the lymph nodes rather than circulating in the blood.

Chromosome deletions and immunoglobulin status of mutated/unmutated are used to guide treatment options. Indicators for when to start treatment remain the same for CLL.

Your results & diagnosis need to be confirmed by a specialist. I read of the problems you are having accessing this. I am in Canada, but I believe the LLS in the US offer a referral service for a second opinion from experts they recognize. Maybe this is an alternative route you could explore? Hope you’re able to find reliable help soon.

[JerrysGirl3 in reply to PoisonDwarf]

Thank you for your info. I was just wondering why this new lymph node On my jaw showed no unmutated CLL when I HAVE unmutated cancer. My results vary so much it's like the leukemia keeps morphing and changing. From CLL to CLL/SLL to MBL back to CLL!! I would think doctors would be very interested in a patient who's cancer keeps changing and why and how it might help other people. Not ignore it and not answer questions about it. And not take more than two tubes of blood during a visit to see whats happening. I have yet to hear back about the new Med. That was a week ago. I was so excited. The longer he waits to talk to me the less excited I get. People wonder why I get so frustrated. When my Endo found out it was not thyroid related, she was done. I said to her would you wait from tests in April to visit in August ? I'm not comfortable with that. Doc talked about doing a virtual to discuss the drug. That has yet to happen. I was really psyched. Now I'm not. I don't know no just don't know....

[SofiaDeo in reply to JerrysGirl3]

"Unmutated" in CLL is generally referring to IGHV status, not other mutations. Your results of "IGHV V3-11:unmutated (0%)" because the (0%) next to the thing tested (here it's IGHV) means that testing of your IGHV had zero mutations. Hence, it is unmutated. It has nothing to do with any other mutation or deletion that might be occurring with CLL or other cancer.

Please spend a significant amount of time on our Pinned Posts section, or at the cllsociety.org website, learning about the different terms and tests and what it means. You will not (potentially) get panicked reading them. Understanding a few basics goes a long way to calming anxiety.

CLL, CLL/SLL, MBL, are all variations of the same spectrum and it's possible for any and all of these to be "correct". It's a descriptor for what is presently exhibiting in your body, at the time the test is taken. If it seems mostly in your blood, it's called CLL. If it's mostly in your lymph nodes, it's SLL. If it's in both, it's CLL/SLL. If levels are below a certain number, it's MBL. So your diagnosis can have changes through all of this, no one is making mistakes. Some people may never see changes, others will. Similar to how some get effects from ibrutinib, others don't. I am not sure what you mean by "zanibrutinib is strong". It's something used for certain medical conditions. The milligram strength commonly prescribed for this drug, can't compare to a different drugs' milligram strength. The "milligram number" used in medications is meaningless between drugs, it's a descriptor. 2mg of one drug used to treat a condition can't be compared to 320mg of a different drug treating the same condition just by saying "320mg is stronger than 2mg". That's not how medications work.

[JerrysGirl3 in reply to SofiaDeo]

I don't know where to access the "Pinned Posts" section. I understand about doses of meds are different. What I meant was that from what I saw it was being used for totally different cancers and thus was stronger. I have very bad reactions to meds so for me, agreeing to try this is a big thing. He told me we would schedule a virtual to discuss the Med and then go from there. I sent him a note in the portal saying I had done my due diligence in looking up the Med and was ready to talk. The longer it's taking the more I will get nervous and think about backing out.

[lankisterguy Volunteer in reply to JerrysGirl3]

AussieNeil has included the links to the Pinned Posts, so all you need to do is click on the blue text and it will take you to the specific posting he wants you to read. -

There are about 100 Pinned posts, with 5 of them visible on this page- they are in the right column on computer screens near the top of this page- just to the right of your original posting.

On mobile devices they are way below- scroll down until you see a section titled Related Posts - with 5 entries and then you will see the first 5 Pinned Posts nearly at the very bottom of this page. You also will see some blue text there that says

"see all>" to open a long page with all 100 Pinned Posts.

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Len

[SofiaDeo in reply to JerrysGirl3]

On everyone's very first post, someone experienced like an administrator or volunteer, gives a welcome with links to the Pinned Posts recommended. So you can back-check a number of them that way. I see there are some on responses to your first post.

On a browser, there's a section to the far right of the screen, every time you are on, there is a section marked Pinned Posts. There's a link to "all", but there are also a few that are always displayed. "Navigating HealthUnlocked" will explain how to find all the different things on this site. "12 Tips......" as well as "Newly diagnosed with...." have introductory items also. I also like Dr. Kaufmann's non-profit cllsociety.org website. If you scroll towards the bottom under "Fast Finds", there is a "CLL Glossary" that explains many of the common medical terminology used in our disease state. His section on "newly diagnosed" has a main page with links of common concerns on the right. Sometimes seeing the same information presented different ways, is an easier and more enjoyable way to learn new things, instead of re-reading the same items over and over. If you can find CajunJeff's series of articles of "blah blah blah for Dummies", these are also very entertaining IMO.

Regarding anything used in different doses, for different cancers, doesn't mean anything is "stronger" for cancer drugs. We want agents that target specific things. There's a concept in drugs called "potency", which means it only takes a very small amount (like 2 mg) to get the desired effect. But that doesn't mean much except that the pills will probably be smaller. And People using terms like "strong medicine" aren't really doing so in a scientific or medical manner as far as the drug per se is. When people talk about a drug being "stronger" they generally are talking about the "effect". So I might say "the standard dose of drug X decreased blood pressure 8 points. The standard dose of drug Y decreased blood pressure 14 points. Drug Y overall has a "stronger blood pressure lowering effect" when comparing standard doses. But if the doc is only wanting to drop blood pressure 8 points, and not 14 points, the doc will use drug X even though drug Y is considered to "have a stronger antihypertensive effect". And lets also suppose these same drugs, at the same doses, may be used for heart disease. Drug X may increase pumping capacity 80%, while drug Y (at the same doses used for the decreasing blood pressure effects) may increase pumping capacity only 20%. So even though Y is "stronger at decreasing blood pressure" it's not "stronger at increasing pumping capacity". So tell me, which drug is "stronger" overall? You can't say something like that without putting it into the perspective of 1) what it's being used for, and 2) what it's being compared to. So this "stronger" concept you are giving zanubrutinib doesn't really apply.

The point I am trying to convey, is depending on what effects the docs are using a drug for, doses change. Drugs change. Doses and drugs may even change and get modified from patient to patient with the exact same disease. A doctor uses judgement based on previous patient knowledge, and what others are publishing as new things are discovered. Plus how the patient they are treating, is having various signs & symptoms. They have to start somewhere. So reading about how whatever drug your doc is suggesting starting with, has nothing to do with whatever other uses it may have for other disease states. Or how the "mg strength" compares to other drugs, or sometimes even other patients, especially in other diseases states. Or patients whose disease has different labwork than yours. Your doc is starting somewhere, based on YOU. And considering you yourself say you have other disease issues, and react to medications, that has nothing to do with how others are using it in other disease states for different patients. If it has multiple uses, it isn't "stronger". IMO the best thing is, to learn/read about the medication and any reported side effects. Search for zanubrutinib posts here, there are a few. So you can be aware of what *might happen*. A list of noted side effects isn't a guarantee, it's a possibility. Docs want to know "could this be the drug, or is the disease reacting somehow". I hope this helps a little!

[AussieNeil Partner Administrator in reply to SofiaDeo]

Thanks SofiaDeo,

Kerry, our replies crossed and I've already pointed you to the pinned posts in my earlier lengthy reply:

healthunlocked.com/cllsuppo...

CajunJeff's post is referenced in my introductory post I also referenced earlier

healthunlocked.com/cllsuppo...

There are 107 posts which specifically mention zanubrutinib/Brukinsa per this link:

healthunlocked.com/cllsuppo...

There are also thousands of posts about BTK inhibitors, including nearly 5,000 about ibrutinib in this community or about 1 in 7 of all our community posts. This shows how much collective knowledge we have about this class of drugs. It also reflects why they've been credited for totally changing the outlook for CLL treatment.

With respect to interactions with your medical team, the very reason for the creation of HealthUnlocked was due to one of the founding CEOs becoming frustrated with how little time he had for his patients. Observing that he had no more time per consultation than his grandfather, also a doctor, he figured that establishing a platform where patients could share their experiences with like patients would be a very effective means of helping patients help themselves. As the CLL Society says, "Smart Patients Get Smart Care™" Our community has around 100,000 years of collective experience of living well with CLL. Take the time to educate yourself regarding your concerns with what you'll find in the Pinned Posts section and elsewhere and continue to ask questions to which you can't find answers. Work out what answers you most need from your interactions with your medical team by learning ahead of time from our community and prepare a prioritised list of what you really need to know. That's how I make the best use of my limited time with my medical team and it works very well.

Len/lankisterguy maintains this pinned post on the triggers for starting treatment:

healthunlocked.com/cllsuppo...

You haven't shared enough for me to work out whether Dr Allan was just suggesting what he considered would be recommended to you when you needed treatment or whether you are approaching the need for treatment. Given your complex health history, when you've worked through your CLL/SLL related concerns, it would really help other members help you better, if you concisely listed your journey to where you are now and what you know about your particular expression of CLL/SLL. For starters, you have test results about your FISH test markers and IGHV mutation status, so you can start off your summary thus:

Incidentally diagnosed with CLL/SLL in 2015 following a stroke.

Breast and thyroid cancer survivor (though I'm not sure whether you had treatment for thyroid cancer or CLL/SLL cells were found in a thyroid biopsy?)

13 q del, CD38 negative and unmutated IGHV

Latest blood test results (May 2022?)

Lymphocyte count ??? (Your WBC count was 38,000 3 years ago, so you definitely fall into the CLL camp)

Slightly anaemic (hemoglobin ???)

Other blood counts (platelets and neutrophils are of most interest)

Excised jaw node tested positive for CLL/SLL (in May 2022?)

Doctor has suggested starting treatment on zanubrutinib - timing to be determined.

The reason I've added in CD38 negative is that it's an independent measure of your likely rate of progression to your IGHV mutation status. CD38 negative and 13q del are good markers, while unmutated IGHV used to be a poorer marker back before we had drugs like zanubrutinib!

I hope you'll edit the above as appropriate and add it to your profile, via healthunlocked.com/profile/... It really does help other members provide you with better support when they can quickly read where you are in your CLL journey and respond accordingly.

Neil

[JerrysGirl3 in reply to AussieNeil]

I have updated my profile

[AussieNeil Partner Administrator in reply to JerrysGirl3]

Hi Kerry,

You've certainly had a tough journey healthwise. While this community can provide CLL related support, there are several hundred other HU communities which you can explore for other health matters of interest to you via the "Find a community" search box through the My hub menu option: healthunlocked.com/my-hub

Neil

[lankisterguy Volunteer]

Please slow down. CLL, SLL and MBL are all the same cancer, just different numbers of CLL cells in different places. -

You mentioned NY Presbyterian, which location and which doctor? Weill Cornell has Dr. Furman and Dr. Allan, Columbia has Dr. Lamanna. Any of them will take the time to explain the tests to you, but ignoring you or not explaining is extremely uncommon from any of those three.

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Len

[JerrysGirl3 in reply to lankisterguy]

I saw Dr Allan first for a few years. He's a "labs all look good " guy. He does keep a graph of labs which I like but I'm not "getting" his explanations because my numbers are all good. I then switched to Dr Lamanna, who I loved and she's in my cancer resource services ins. But I have to be driven in. No way to bus it so my husband had to take off of work and it's a horrid drive. I also don't like her nurse who scares me lol and it's like a three hour visit: 1 hr with nurse. 1 hour with doctor in training (who didn't understand me ) and then Dr Lamanna. She responds quickly when she is given a message. However I don't think she has been given my messages because I've gotten no answers. Went back to Dr Allan and he almost never responds to my questions in the portal. I know he's really really busy but I am so stressed by some recent results that I don't understand and I need him to explain what they mean not that they are ok. I have a cytology report I'd like to post but the darn portal doesn't allow you to print out reports. I'm at a standstill here and I don't like it. I think having tests in April and seeing him in August is a little much. He was the one who got me all excited about the new Med and I haven't heard back when I asked for his suggested virtual.

[SofiaDeo in reply to JerrysGirl3]

You don't say the docs are refusing to make followup appointments to discuss your test results. If don't want to go in person, I will do a telehealth visit. But no doctor I have ever worked with will discuss biopsy results over the phone shortly afterwards, unless it was to clarify a question you had from the post biopsy visit. There is always a post-biopsy or post CT or whatever visit. If it's not scheduled urgently, I would take that as a good sign nothing going on with your disease is "urgent". But you can always call & ask to be scheduled sooner. And not all docs enjoy teaching what every lab value means/the ramifications, and that's not really their job. If a doc enjoys teaching elements, they may choose to do it, but they are there to diagnose & treat. If you are asking the kind of questions that basic disease and testing knowledge would answer, I am sorry to say many doctors just don't have the time to be medical educators. And they don't discuss lab results much over the phone unless it is a followup from a recent visit, except if it is to notify you there is something that needs to be addressed. So I am wondering if your doc saying "let's get you started soon" was meant to be a "we'll discuss this at the next visit" as opposed to "in the next week or so." To prepare you, think about it, research the drug he mentioned, and bring your questions to the next visit.

If you don't have another visit scheduled, a doc you saw previously isn't likely going to continue to answer questions weeks after that visit IMO. Especially if they know you went back to/are seeing another doc. It would be inappropriate to continue to answer any questions if you are not an active patient of theirs.

I'll also ask if you use a large university associated health care system. These tend to be more active and involved in educating their patients IMO. It's often part of their mission statement. If you are only dealing with for-profit hospital groups, there probably will be less patient teaching. This has just been my experience working at a variety of health care types when consulting. I traveled all over the country, saw numerous systems and how they were set up. Large university affiliated teaching institutions did the most patient education IME. For disease states with huge patient populations like diabetes, there are often in-house patient teaching programs. But for something rare like CLL, there isn't.

[JerrysGirl3 in reply to SofiaDeo]

When I spoke to the doctor HE said you research the Med and we'll set up a telehealth (I call it virtual ) visit to discuss it, and then I have an August date set up. It is a large teaching hospital which is why I do the 3 hr bus trip in and out and walk the 7 blocks for a 20 minute visit. It is also expensive transportation and I have been on disability for 7 years so not much income coming in to my household. I have had two bad experiences at "teaching "Hospitals. One- the surgeon who was supposed to perform my TT and neck dissection did NOT do it - one of his "ducklings" as I call them, the ones who follow in a line with pads and pens, did it and nicked my vocal cord nerves and God only knows what else, and I was told I also had a node wrapped around my vocal cords that didn't show up in CT or Pet scans. (Note: I read on another forum a posting by another woman who had the same thing happen to her on the same month, year and with the same top doctor and her results were like mine - HORRENDOUS!) I believe to this day that it was the medical book chapter they were working on - nodes wrapped around the vocal cord. Destroyed my life in so many ways, besides the Minnie Mouse voice I lived with for three months until I found something that brought it back mostly. Or the major teaching hospital where I was awakened in the middle of the night by a cleaning crew cleaning the bed next to me and moving a patient in. All well and good until I realized I was sharing a peeing thingie that measures output, with her OMG !!!!!! She had no insurance and had five doctors around her and when I asked a question of a nurse sitting there I was told "you're not my patient "! And yet I continue to go to them because their doctors are better. Now I have to think, are they really ?? I can go on and on with my experiences in "top" hospitals. I am finally sort of getting over PTSD suffered during another hospital visit locally. My brain is fried from trying to do research on my conditions and their aftermaths and having two minor strokes doesn't help.

I saw the other doc twice (came back with a stroke in the morning 😳 which I think could have been picked up somehow by the extreme increase in lab numbers over a two week span) then sent a message to original doctor that I wanted to stay with him and asking if he would take me back. Which he did. I haven't seen the other doctor since. Although if she would only move to NY Presbyterian and leave Columbia which is so hard to get to, I would change back in a minute.

I might not be a "serious" case but I deserve to be treated with respect. I'm not mean. I'm a good person who is still good despite terrible things done to her.

My CT was in April and we only scheduled my regular appt for August, when my usual 3-4 months is generally scheduled for. He spoke to me about the nodes growing, although slowly, with each imaging, and the use of Zanubrutinib, which I would research and then we would talk further. Did the biopsy change anything ? Make him want to delay the meds a little longer? That's fine too. But let me know. His assistant is the one who responds to me.

I will try to update my profile. Will have to use my PC for that as I use my phone primarily. It's just having to live through my medical history is not healthy for me and makes me crazy at the damage that was done or said to me. And I have no one to talk to about it. My husband made it clear last night that he doesn't understand the CLL issue. Really? My two closest friends and allies have died in their fight with cancer. Unless you have it you have no clue, and it doesn't matter what type of cancer you have.

I am sad and sickened at heart at the lack of support from my own families - the

one i was born into and the one I have borned. Yes. I could use help. A great psychiatrist I thought i would see charges$300/hr starting with a two hr visit. And doesn't take insurance. I started laughing. I guess you have to have money in this world to survive physically and mentally. So I'm on my own. Not looking for pity. Just a statement of fact. Maybe that's why I need more than "your numbers are good ".

Sorry for long post. I will follow advice given by all but now it takes me time so please bear with me.

With sincerest gratitude

Kerry

[AussieNeil Partner Administrator]

Hi Kerry,

You've had some very good replies to your post from Len, PoisonDwarf and SofiaDeo with which I concur. Your endocrinologist was right not to comment about your CLL/SLL, as it was outside her area of expertise.

To summarise, you have been previously diagnosed with CLL/SLL and that is confirmed in the Per CoPath reference at the bottom of your report specifying the atypical B cell expression in your peripheral blood consistent with CLL/SLL or MBL. Reinforcing what Len PoisonDwarf and SofiaDeo explained, your absolute lymphocyte count of 4,160 when that CoPath test was done, puts you in the SLL/MBL category, but because you have systemic symptoms, you had the SLL expression of CLL/SLL back then. If your latest blood rest result has an ALC of over 5,000, you now have CLL. The CLL/SLL threshold is all rather pedantic, because lymphocyte counts go up and down and it's the same disease, with the same treatment drugs. It's just easier to monitor CLL for progression through monitoring blood tests vs trying to assess node growth via physical examination and CT scans. Your excised node was swollen due to CLL/SLL cells.

Please do take the time to check our pinned post section here: healthunlocked.com/cllsuppo...

Two pinned posts in particular are relevant - the newly diagnosed one and the one about recognised triggers for starting treatment.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Take your time reading through them and ask for clarification when you are unsure about anything.

It's a bit harder to know with an SLL than CLL expression when treatment is necessary, as it depends more on node sizes and where their location may be affecting your health. Also I note that you keep referring to zanubrutinib as being a strong medicine, which is not a helpful description. We want effective medications for CLL, which zanubrutinib certainly is. I gather your concern is more about the side effect profile. Zanubrutinib is a second generation BTK inhibitor with an improved side effect profile over ibrutinib for which we have 10 years of experience, with very many of our community members doing very well on these BTKi drugs. Zanubrutinib is not only effective, but is generally well tolerated. Unfortunately we don't know how we will respond side effect wise to new medications until we try them, but do keep in mind that second generation drugs are specifically designed to be more selective for CLL with less off target effects. That is why zanubrutinib is considered an excellent treatment option if you do need to start treatment.

Neil

[NoClew]

Kerry, I so completely understand and empathize. Independently, both my Psychiatrist (antidepressants/anxiety meds) and therapist diagnosed me with PtSDr standing for post, lots of small traumas piling up stresses by Doctors!😱 t.

[JerrysGirl3 in reply to NoClew]

Ohhh I so understand 🙁. I don't ever remember being stress free since I was 17 and kicked out of my house lol. 50 years ago 🙁🙁