Flow cytometry did confirm CLL type cells in blood, FISH studies showed 13q deletion, IGHV status unmutated, and NGS panel didn't show any genetic features that we know how they impact the CLL diagnosis (most importantly it didn't show any of the worrisome findings we look for on this panel). 13q deletion is a good feature and unmutated IGHV can sometimes indicate sooner time to needing treatment - so these findings are mixed. Again these are only predictors, the best way to follow the CLL is how we are doing it now - by trending your counts over time and seeing how you are feeling.
So I guess overall I’m in good shape except for being unmutated. When she emails the reports I’ll have more to go by.
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JerrysGirl3
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I have the same FISH results. I can see the needing treatment sooner. I was diagnosed with CLL in March and had to start treatment in beginning of September because my WBC's went from 17.5k beginning of June to 64k end of August. Couldn't walk across a room without having profound weakness and shortness of breath.
No worries though....the Imbruvica made me feel so much better almost immediately after starting it.
Was hospitalized in May with a clot in my left thigh approx 8" long. Taking Eliquis with the Imbruvica which scares me because bleeding can happen easier.
As you know 13q is a chromosomal marker like 17p and 11q. Thus when you say only predictors, does that include gene/protein markers and mutational predictors as well? e.g, CD20, CD5, CD38.... unmutated is usually associated with a dimly expressed CD38. I think ATM, TP53, and Trisomy 12 are possible with 13q as well.
The test report should not omit those markers, but rather should state either their absence or insignificance.
Bright CD45 positive cells account for 52%of analyzed cells. Anaylysis of the dimCD45 positive cells does not demonstrate significantly increased cells positive for blast antigens. Analysis of the bright CD45 pos cells demonstrates an atypical B cell population expressing monotypic surface kappa light chain (dim) (32% of cells) that is positive for CD20-dim, CD5, CD23-dim, CD21-dim. A small polytypic B cell background is noted.
A relative lymphocytosis is present
The atypical B cells are negative for ZAP70 and BCL1
The findings indicate the presence of s monotypic B cell population with an immunophenotype of chronic lymphocytic leukemia/ small lymphocytic lymphoma CLL/SLL. The differential diagnosis included monoclonal B cell lymphocytosis and CLL/SLL
Trisomy 12 deletions of MYB, ATM and TP53 genes and deletion of the 13q34 region were not observed in this sample by FISH analysis however allelic deletion of the 13q14.3 region was observed in 34% of 200 interphase nuclei evaluated. I am also unmutated.
How am I supposed to figure this out? So now I worry that I’m CLL/SLL!!
And I became a grandmother a year ago. I want to know so I can make my plans. I’m in watch and wait. I had thyroid cancer (which I think affects treatment. (I know it affected the study I was in. I would never be able to take the meds, but I didn’t care because I was doing it to help others). Breast cancer. A stroke. And other bad things. I can’t figure this stuff out and my doctor would have to sit with me for hours explaining it. I have nodes against my spine by my abdomen which are “probably” CLL related. My neck and clavicle feel swollen- is it thyroid or CLL? I don’t know..... : (
(Note the above results were picked out of different pages and not complete)
You've proved that you are a survivor! At least following your CLL/SLL diagnosis, you've had two CLL doctors inform you that there is nothing concerning them about your CLL/SLL. So with most of us here, just watch and wait while the experts find a cure for us - we are nearly there.
But they have yet to say to me that “yes it’s cll/sll”. Even tho it says it in test results . I’ve not been feeling right. No appetite but gaining weight like crazy! Stomach bloated. Go to sleep late and wake up early. Sometimes have night sweats tho not massive. Feels like bone pain sometimes at night so bad I can’t sleep and try to take pain meds to relieve it but it doesn’t. But when I mention it he never addresses it then I forget and I’m sitting on the bus with my list in my hand saying I can’t believe I didn’t go forward with this!!
One of the triggers for starting treatment for CLL/SLL is significant unintended weight LOSS, not gain. Your other symptoms are also unlikely to be CLL/SLL related other than what could be due to the understandable anxiety with learning that you have been diagnosed with a blood cancer. It will take time to adjust to this, but please understand that CLL/SLL is a chronic and slow growing cancer. About a third of those diagnosed never need treatment.
Because you are unmutated IgHV, you may eventually need treatment, but by the time that you do, if it's not already the case where you live, you'll most likely be treated with a non-chemo drug or drug combination that will either wipe out your CLL/SLL for many years or keep it under control so that it's not a problem for you. As Smakwater mentioned elsewhere, older chemo drugs like FCR and BR don't generally deliver long remissions in those with unmutated IgHV, but that's not a given. Honestly, the way new drug combinations for CLL/SLL are delivering increasingly better results as regularly reported here, your specialist can only say that if you need treatment in the future, you can expect even better than what's being reported now.
You have pretty well all the pieces now for a CLL specialist to give you a reasonably accurate prognosis about how your CLL may influence your health. I hope you can arrange an appointment soon with a specialist to get that much needed reassurance. I suggest you post again, asking for guidance on what questions you should ask. Use those suggestions to prioritise your list and perhaps give it to your specialist for them to review and respond to you. Meanwhile you'll find lots here to help you live well with CLL. Have you checked out our Pinned Post section here? healthunlocked.com/cllsuppo...
This post in particular will help you get back in control of your health and life with a CLL/SLL diagnosis: healthunlocked.com/cllsuppo......
You will need someone like JM954 to interpret the majority of the protein markers"CD", however, the protein markers that I am familiar with on your report do not indicate less favorable prognosis but rather are associated with malignant B cell lymphocytosis. The unmutated status is considered unfavorable in the context of FCR therapy, yet it is not necessarily so with the novel agents like Ibrutinib and venteoclax.
I do not see any elevated risk indication other than the unmutated status, which again has mainly been observed in relation to FCR. There are even cases where FCR has proven successful with the presence of unmutated IGVH, usually where there is no 17P deletion. I believe that AdrianUK is unmutated, and he is experiencing good results currently with FCR in the clinical trial that he is enrolled in.
I am also unmutated with minimal other indicators, and I am doing extremely well going on 12 months of Obinutuzumab and Venetoclax. My recent bone marrow biopsy revealed no CLL at over 1:100,000 cells.
I believe you can have reasonably high expectations for treatment response in todays novel therapy climate. Please do not interpret my inquiring thoughts as if they should cause concern. I have great expectations with the dynamic in CLL treatment today.
Out of curiosity what is your WBC RBC and platelet counts?
Don’t worry about worrying me lol!! I worry enough for everyone I know haha! I survived my breast cancer because I had a “feeling “. It was the size of a highly sharpened pencil point five dots !! But it was in situ. It was highly aggressive. I had a lumpectomy and radiation and haven’t thought of it since 2003. I saw a lump above my clavicle and immediately went to a doctor who put me in for an immediate scan. I had thyroid cancer but the funny part is that I believe what I saw was only a swollen lymph node in 2012. Had TT and neck dissection and again it was high grade and metastatic!! My body produces all high grade aggressive cancers that’s why I believe so strongly in addressing sooner rather than later. But I guess I have to trust my doctor. I’m not even sure he knows all my health issues like congenital heart defect. I see when I was in hospital in 2015 for emergency abdominal surgery when CLL was found, that I had a collapsed lung or a fibrosis of some sort !! No one said a word to me. This is why I go crazy. I’m not afraid of dying but I certainly would rather live with quality of life. Right ?
I am with you all the way about being vigilant and expectation for the quality of life.
As for your cancer challenges, "Good Grief!" I am incredibly humbled by your strength, perspective and relentless perseverance.
All of my numbers are in range except the ANC. My neutrophils dropped to .97 at one point, however this is expected with venetoclax. I was given a G-CSF injection at that time. The injection boosted my ANC up to 6.7, which lasted 3 months. I currently float between 1.2 and 1.6.
You are a veteran fighter, surely to be admired. Take a Bow.
Thanks Smakwater. I want to know how everyone’s docs knew when to put them on meds. The last thing i need is to be on meds because I have horrible reactions to fillers. ALL the time . So I guess I should be thankful I am on watch and wait. It’s just everyone on this site seems to be on meds so it’s hard to relate.
From your statement "I want to know how everyone’s docs knew when to put them on meds". It appears that you have a balanced accurate perception of your individual conditions.
I believe that conversation such as we have here is an offering of consideration, whereas the ultimate measure that provides action should be weighted by the conversation that each individual pursues with their doctor of choice.
We are individuals with unique differences, and our perspective correspondence is no substitute for direct observation by a trained professional.
Keep up the conversation here with that state of mind. Present the ideas that you deem credible to your doctor, and you should do well ultimately making decisions with your doctor.
You sound like a smart patient, and as I recall Dr. BK says "Smart patients get smart care".
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