CT scan of abdomen pelvis and chest is that a basis for starting treatment? Husband’s Bloodwork all still very stable no anemia absolute neutrophil count and the absolute lymphocyte count stable but doctor wanted scans
There is some generalized increase in size of lymph nodes throughout the chest and abdomen and pelvis but only two have doubled in size since 2019 from two or 3 mm to five or 6 mm now some of the largest nodes went from a half centimeter to a full centimeter but nothing extremely large yet Dr. is now talking about starting treatment again. There has been no weight loss night sweats fevers or infections. The spleen is only mildly enlarged. Many of you may be aware of my struggle with our doctor here and his sometimes increased rush to treat we finally got the Covid vaccine and I thought we could finally live life a little bit more normal but now we’re back to looking at treatment options again
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You may want to read this pinned post (even though you and your doctor are on opposite sides of the hypothetical discussion presented) healthunlocked.com/cllsuppo...
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You can use the links that list the guidelines and share them with the doctor as part of the discussion where you ask the doctor to justify the recommendation to start treatment "early":
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SNIP The formal answer from the medical guidelines: emedicine.medscape.com/arti...
Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia (CLL) have been issued by the following organizations:
All three guidelines are in agreement that patients with early-stage CLL should not be treated with chemotherapy until they become symptomatic or display evidence of rapid progression of disease.
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And the comment from Dr. Furman: Wed, 05 Sep 2018
"Nothing has changed as of yet for watch and wait patients. My belief is that for 75% of patients, watching and waiting, and then starting BTK inhibitor therapy will be sufficient to provide extremely long-term disease control of their CLL. For the other 25%, we have issues with transformation and BTK inhibitor resistance. These patients do need something different. One theory of mine is that earlier initiation of treatment might be beneficial. We are currently writing a trial to test this, but for now, we are still doing it the way we always have."
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If you are not seeing a CLL Expert, you may want to get a free 2nd opinion from one here:
All great points Len I totally agree with and that is why I have such reservations. Husband is doing well. Bloods are stable, not anemic and lymphocyte count stable as well as absolute neutrophils. Also no infections at all. Just generalized fatigue but he only sleeps about 5 hours a night at best. I would not even be able to function.
Here are the iwcll treatment guidelines Len linked you to and your lymphadenopathy (size and distribution of your nodes) does not appear to meet the guidelines to treat. You might ask your doctor if he agrees you do not meet the criteria to treat now, and if so, is there some reason he wants to treat outside of the guidelines.
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.
I agree with lankisterguy and cajunjeff, unless there are reasons affecting ones health, or overt symptoms, there may not be a need to treat. There is discussion in the oncology world, and some new studies, which will try to determine if treating CLL earlier is better than waiting. We won't have this information for a number of years. Your doc may be coming from this point of view.
There is one other consideration I personally use. To my knowledge, no one has studied this in particular, but I think it's kind of a "common sense" thing. There now is proof that blood percentage of lymphocytes generally shows a correlation with bone marrow infiltration of CLL cells. This information is noted in the uMRD data, doctors who are studying the correlation of uMRD in blood versus uMRD in bone marrow have stated this. So the general rule (there are always exceptions) seem to be, blood percentage of lymphocytes indicate bone marrow percent of CLL infiltration. It's the basis behind no longer insisting ona bone marrow biopsy to say someone is uMRD. To me, especially seeing how some people here struggle with anemias, thrombocytopenias, and neutropenias, it makes me want to treat my CLL when the % lymphocytes is greater than 90%, regardless of any other parameters or symptoms. I don't want to wait until my bone marrow so infiltrated by CLL that it can't make other cells. And in my case, I have managed to avoid life-threatening problems and hospitalizations. So when I came out of my long 5 year remission, even though my ALC was numerically lower than it was during my initial diagnosis/treatment, and I wasn't as symptomatic, I started again once that percentage crept up over 90%. Once that percentage went over 90%, I started treatment. Good thing I did, because the first choice gave unacceptable side effects, and treatments 4 & 5 after that didn't work effectively. Throughout all of this, I haven't needed RBC or platelet infusions or injectable meds, nor have I been hospitalized for anemic, infectious, or platelet problems. I am of the opinion that by starting just before I became really anemic, or thrombocytopenic, or neutropenic, I avoided some of this.
So IMO this is the only reason to look at % of lymphocytes in blood, to assess bone marrow infiltration. And I think this should be added to the lists of reasons for treatment, and high percentage of marrow infiltration be added to these lists.
With such a heterogeneous illness as CLL/SLL, I don't think the percentage lymphocytes is likely to provide much in the way of guidance, or at least not with further provisos. I've certainly never heard of it being a consideration. Also, the influence of neutrophils can be dramatic, along the lines of what I demonstrated in this post: healthunlocked.com/cllsuppo...
Neutrophils can vary between 2 and 8 while remaining in the healthy range. With a WBC of 50, that range works out at potential difference in the percentage of lymphocytes of anywhere between the low 80's and high 90s! My percentage of lymphocytes got to 95% nearly 6 years before my first treatment.
Perhaps you have already done this but I think you had an expert opinion from Dr. Davids (I had one from his as well). I would reach out to him again. I think your husband has had a few previous treatments and perhaps your doctor is noticing trends so that he wants your husband to be ready in case treatment is needed.
Our specialist follows the iwCLL guidelines like were shared above. Swollen nodes are very normal with CLL. Specialists only use scans when a specific symptom warrants it. Scan over use is another sign your dr isn't up to speed on CLL. Good luck! I think you are smart to question the scan and slow down the process.
I am new here and a meeting for my first face-to-face with my doctor in June. He did mention doing scans (I have a couple of slightly enlarge lymph nodes in my groin) to make sure they were not growing in the opposite direction and blocking anything.
Get a second opinion. I don't see any reason to treat based on the information you provided. Enlarged nodes on a CT are not a reason to treat in most cases and your husband's node aren't even enlarged. Normal is up to 15 mm.
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