Hello, I've been a member of HealthUnlocked for about a year, this is my first post. Thanks to all who post and respond ... very nice and so heartfelt. I must say that I'm really not quite up to speed on the treatment variations and history ... I think I'm getting there.
I was diagnosed in March of 2021 and have been on W&W since. Most recently my 6 month number of lymphocytes has increased by 86%. It was a nice semi low in October of 2022 16.3k and increased to 30.3k by April 2023. One note there. I have been on a pretty steady diet of no meat, little dairy, plenty of fruits, vegetable, grains etc. since my diagnosis. I exercise and sauna regularly. For some reason I decided to come off of that in October and re introduce meat, eggs etc. into my diet ... until my next blood draw. My lymphocyte count went up to 27.1k by 1/17/23 and to 31.9k by 2/17/23. My last visit however, showed a small decrease down to 30.3k in April. I changed my diet back following my results in January.
In addition I've had a CAT Scan and am showing a few enlarged node in my pelvic area ... 5.5cm x 2.5cm. My spleen is 12.5, barely over. I have several nodes in my neck and armpit that are noticeable to me ... no pain. I also have very mild night sweats once every three weeks or so. Overall I feel well, no fatigue, weight loss, etc.
So, finally to my question. My oncologist at UCSD is recommending I take advantage of a clinical trial starting soon that would include Venetoclax and Ibrutinib. Does this recommendation seem a bit aggressive or early?
Thanks everyone, I appreciate your help. Hope you can read the spreadsheet, looks a little dinky as I'm posting.
Take care.
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wwjdt
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Presently it seems unlikely that you’d meet the formal iwcll (but not written in stone) guidelines for starting treatment. Which are;
Active disease should be clearly documented to initiate therapy.
At least 1 of the following criteria should be met.
Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.
Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly. Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy. Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.
Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.
Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).
Disease-related symptoms as defined by any of the following:
Unintentional weight loss ≥10% within the previous 6 months.
Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.
Night sweats for ≥1 month without evidence of infection.
Obviously your specialist has the full picture but I sense that by asking, you suspect treatment is rather premature at this time. It could be that the availability of a good clinical trial is the driver in this but it does seem that this would be earlier than usual treatment should you take it (especially as you feel well).
Thanks very much, very helpful! I suppose I am feeling like it may be a bit early. It’s likely I’ll put it off till my next scheduled blood draw and visit and see how things look. Thanks again!
You are in the US, so likey have had both FISH and Flow Cytometry, possibly other tests done at diagnosis. Without seeing those results, one can't really say if you have a potentally aggressive variant or not, that may benefit from early treatment. The lab results you posted, alone, won't indicate this. What are those other test results? And what is the trial, does it have an NCT#? I am not seeing one in the database that might be the trial you are referring to.
If costs are a concern, the MAJIC trial will be recruiting in California at some point. I don't know if USCD will be a study site or not. Unlike many other trials in the US, this one *pays for* the already FDA approved drugs. So unless the trial your doctor at UCSD was recommending also pays for them, this may be a consideration. But assessing your markers/risk for aggressive disease with poor outcome, your symptoms, and ability/willingness to pay for and contribute to hassles of treatment, all play a part in what treatment may be best for you. My variant by testing "looked bad", and it took me 4 months after I decided to look for a treatment, to decide exactly what to do and start a treatment. By then I was a bit worse, but not terrible. I think being proactive in my case has helped me. But I have a neighbor with CLL whose doc has been pushing him to treat since his diagnosis years ago. His platelets finally dropped to where he had to do something last year, and he is glad he put it off all those years. His markers were not considered "bad" like mine are. So a talk of how aggressive/severe your particular variant, based on all these tests, should be something you understand before deciding to treat IMO. There are some newer tests, not available when I got diagnosed, that seem to be pointing at a more aggressive disease, with some talk amongst the docs that for some of these people, waiting may not be best. One of these markers indicates the variant is secreting chemicals, altering the environment, that make it "more favorable" for the variant to survive. Docs are talking about treating these specific patients sooner rather than later. There's also discussion around the markers that those patients who actually have had a Richters Transformation have in common, and if it is best to stamp out these precursors before they transform. So IMO you need to know the results of your tests that gave the diagnosis, and understand somewhat what it might mean.
The CLL Society has good information specific to CLL. The links on the far right have lots of basics. The Pinned Posts section here does, as well.
Outside of some things like lymphocyte doubling time, original beta 2 microglobulin at diagnosis, age, it's the FISH and flow cytometry and other test results that generally might point to an aggressive disease. The "poor prognosis" factors. In addition to any bone marrow biopsy that might show actual amount of CLL infiltration. The trending of platelets, etc. can be an indirect measurement of how rapidly the bone marrow is being compromised.
Do you know your triglycerides and HDL levels? We eat in a certain way to achieve certain goals. They have to be measurable. Otherwise it's running in the dark without a guiding light. You need your HDL levels to be high and triglycerides low.
Thanks very much, I think I have that info. I'll study my most recent blood draw and all of the associated reports. I 100% am conditioned to just look at the lymphocyte count and total WHC. Thanks again!
I am new to this whole disease and I’m W/W with more testing to come, but I have been hearing there are clinical trials which are aimed at those earlier in their disease, but with markers that they are higher risk for earlier treatment (unmutated, certain FISH results). The thought is that it MAY be beneficial to start treatment earlier to nip it in the bud and kick it back more completely for longer. w/W was instituted before they could hone in on genetics coupled with better, less harmful treatments, which is why they are looking at earlier treatment for some. Just a thought to ask the doc about his/her reasoning.
Sounds early to me. If you are not having lymph, spleen, blood platelet or RBC issues that are creating health issues, might as well wait, is the current medical thinking.
If you qualify for trial and want to treat early, that's up to you of course.
I was biased towards aggressive treatment and had some of those spleen and blood issues, and I still waited until more clear health issues manifested. My charts were not too different from yours my first year, though I had much lower platelet counts. But I waited until ALC was up near 200k and definite organ issues emerged.
Looking back I might have put it off a bit too much, but I'm not sure starting earlier would have been helpful. Treatment's not a walk in the park, even with the newer medications.
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