I was diagnosed with sll in july 24 and started acalabrutinib in late August. I saw my oncologist once when first diagnosed and have had two follow up visits for bloodwork and was seen both times by his physicians assistant who mostly just asked about any issues or side effects i may be having. I asked about fish test the first follow up and was told they were waiting for results. Second follow up i forgot to ask. I have noticed on this site a number of people talking about their fish test indicating various markers or mutations that would be indicitive of possible prognosis. I have an appointment with my oncologist next Tuesday and is supposed to be with him and not with an assistant this time and would like to hear ideas of good questions that i should ask
Sll questions: I was diagnosed with sll in july... - CLL Support
Sll questions
Look up the term "Test Before Treat". Roughly, it's an initiative that encourages patients to get all their correct tests done for the optimal treatment for their type of CLL.
Some types of CLL respond better or can be less affected based on Bio markers, IGIV mutation, and genetic mutational strains occurring.
I'm concerned that your oncologist just gave you cancer meds without really proving exactly what information was forming their treatment plan for you. It is not the sign of investment in you as the patient, it seems more like just throwing pills at a problem - next please.
It is possible that you've left out that part of the story for personal reasons, and that's fine. But, if this has been truly skipped over, you're being give short shrift.
Oncologist said wanted to start treatment immediately since i had a node in my abdomen next to spine that was 3.6 by 5.9 mm if i remember correctly and was causing back pain. I have numerous other nodes above and below my diaphragm with swelling but much less. Said indicated stage 3a. I will say back pain went away pretty quickly after starting the acalabrutinib.
CM?! mm would be to small to mention, around 1.5cm 15mm is the size they start to bother about on scans when checking for a good response.
FISH tests for deletion/copies in 11q, 13q, 17p and tris 12. del(11q) was considered poor but responds well to BTKi (Acala) and BCL2 drugs. Del(13q) is considered good but too much deletion is poor. Del(17p) was very poor as it prevents chemo working, responds well to Acala. Tris 12 is a third copy of chromosome 12, meh. These can change as subclones are selected by treatment.
IgHV, mutated is a good marker, long time to treatment, responds slowly to treatment but has better results. Unmutated is a poor marker. shorter time to treatment, responds quickly to treatment but has worse results with faster relapse. For Acala the difference between "better" and "worse" is not really significant, a few percent in PFS at 6 years.
NGS panel. Looks for specific mutations, TP53 (17p), ATM (11q), SF3B1, NOTCH1 and others. Worry about them when you find out.
Flow cytology. Clusters of differentiation, CD5, CD10, CD19, CD20, CD23, CD38, CD79a/b, CD200 are just a few of them, they will be positive bright or dim, negative. These are of more interest for confirming CLL and deciding treatment. No point giving someone that is CD20 negative an anti CD20 monoclonal antibody.
Serum free light chains these can indicate a clonal populations. Lambda or Kappa. Restricted is likely to be a single monoclonal population, while unrestricted means it's at least bi-clonal.
FBC
You haven't been on the drugs long enough to worry about the absolute lymph count, it will be all over the place for the first 3 months as CLL B-cells exit the nodes to die.
You do need to worry and ask about neutrophils and platelets. Very low neutrophils can result in sepsis and needs immediate treatment. Low platelets results in bruising or even bleeding.
I was wrong with saying mm. Actually measurement was in cm. Thanks for the information about fish so if i get results i have a way to see what it means.
@Skyshark You mention “Del(13q) is considered good but too much deletion is poor. ” How much is too much? Thanks
When the del(13q) includes RB1 it's considered higher risk and moves what would be "low risk" into "standard risk".
healthunlocked.com/cllsuppo...
And having just reread that "q14.11q14.3" means 13q14.11 through to 13q14.3, which makes whole lot more sense.
Ok, so you had a node impinging that explains it. Well, as the nodes are reducing, I'd work to get more tests done and information gathered. Glad it's helping you so far. 🙂
This is a great video about testing, treatment and good questions to ask.youtube.com/watch?v=HxMgkCD...
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