I am looking for a little feedback. I was diagnosed with CLL in March of 2018. In December 2019 my V.A. Oncologist prescribed two Ibrutinib 140mg oral capsules daily. At the time I felt OK with some swelling in my lymph nodes and some fatigue, so I declined. Now I feel more fatigue with pronounced swollen lymph nodes on the right-side groin area only, the other lymph nodes have some swelling. I do not have drenching night sweats; I just get hot and sweat but not drenching. I will be 71 in four months.
My question is. I was offered Acalabrutinib, should I wait for more symptoms or should I start the Acalabrutinib now.
My FISH test summary is;
Positive for deletion 13q14.3 (75% of cells).
Negative for the following: deletion of the ATM gene (11q22.3), trisomy12, deletion 13q34 and deletion of the TP53 gene (17p13.1)
My blood test are;
WBC = 133.3 (1000/mcl)
Lymphocytes Manual Count = 119 (1000/mcl), Range 1.00-3.6 (1000mcl)
Neutrophils (Manual) = 7.24 (BILL/L), Range 2.5-7
Monocytes (manual) = 2.07 (BILL/L), Range 0.2-1.0
Eosinophils (Manual) = 3.10 (BILL/L), Range 0-0.5
RDW-SD = 46.3, Range 35.1-43.9
Thanks for the feedback.
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Test_Tech
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I have Oncologist at the VA and at Kaiser. The VA Oncologist sees plenty of Agent Orange originated CLL patients but he never mentioned he was a CLL specialist. The Kaiser oncologist told me he deals with mostly CLL patients, again I never heard the words "CLL specialist", so no I do not have a CLL specialist.
"CLL specialist" is a shorthand term for a specialist who sees a lot of CLL patients and keeps up to date with the latest developments in CLL. With the recent rapid changes in treatment, the latter requirement is very important. There are a few lists of "CLL specialists", maintained or referenced here:
cllsociety.org/toolbox/cll-... One or both of your specialists may appear on the lists, but note the provisos of how the lists were generated.
In general, oncologists specialise in solid tumours not blood cancers, so you are more likely to find a "CLL specialist" when you see a haematologist/oncologist or a haematologist who practices specifically in blood cancers.
I did not see any CLL Specialist with the Veterans Administration nor Kaiser Permanente on the list, even though they see plenty of CLL patients. I feel comfortable with the two I have.
Can you tell us what your wbc was at diagnosis and how your hemoglobin and platelets have trended since your diagnosis? Treatment decisions are more often made on how numbers have trended over a period of time as compared to a snapshot in time.
Its almost always a good idea to get an opinion from a cll specialist before treating, although I doubt many specialists would argue that acalabrutinib is not a reasonable choice for a first time treater.
I think aclabrutinib is an excellent drug that has a strong chance of melting your nodes away and improving your fatigue. Nodes that are increasing in size and causing discomfort are a factor to consider in starting treatment as is increasing fatigue.
The size of your 13q deletion at 75%, while not a treatment criteria in and of itself, could be an indication your cll is advancing too. Do you know your IGHV mutation status? At age 71, whether its mutated or not, I think acalbrutinib a good choice. If you were younger and had mutated IGHV , FCR might be in the discussion too.
Your platelets and hemoglobin are trending down, but still in a good range and no indication for treatment. Did your wbc go from 17k in March of 2018 to 133 now? If your lymphocytes (a component of your wbc) doubles in 6 months, that can be an indication for treatment. When you get up in the range of wbc you are now at 133k, wbc doubling time and lymphocyte doubling time are much the same thing. So do you know what your wbc was 6 months ago?
Yes, acalabrutinib started in January as my first treatment after five years of watch and wait. HGB 10 and PLT 100 were my indications for starting treatment, which coincided with my spleen getting too large.
My reasoning for wishing to start earlier... you're only young once!
Great question. Achieving U-MRD is doubtful on this drug. Instead I'll either take it until it stops working or until there is mature combo data (which might provide the opportunity add drug(s) and stop). The key is buying time, because the treatment options are getting better every year.
Of the 99 patients who started acalabrutinib monotherapy for first-line treatment on a clinical trial in 2014, 85 patients remain on treatment after 53 months. I like those odds.
We normally are trying to convince new patients to wait until they need treatment and to see a CLL expert to help them decide what and when to treat.
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But in your case you have fairly common plain vanilla CLL and typical symptoms, with two moderately experienced doctors that have suggested the best treatment being used today, so I would ask, what reason would you have for delaying start of treatment. It seems inevitable, and all you can look forward to is more fatigue and larger nodes.
In addition to swelling nodes, your lymphocyte count has grown 20 fold in the two and a half years since diagnosis, or around a 6 month doubling time, although growth has apparently slowed considerably this year. However, your CLL is seemingly starting to put more stress on your bone marrow, judging by your falling platelets and haemoglobin - though it's hard to be sure from just a couple of results. They are at healthy levels now, but your tumour growth appears to be reasonably aggressive, based on the limited information you have provided. I would suggest that's why your two specialists have suggested starting treatment. (With CLL, you need to monitor trends in your lymphocyte, platelet, haemoglobin and neutrophil counts in your blood and changes in your node and spleen sizes.) Did your specialists share why specifically they considered treatment time had arrived?
Given you are noticing your fatigue is worsening, your nodes are swelling and your haemoglobin and platelet counts are deteriorating, waiting longer is only going to make it harder for your body to deal with the impact of the treatment drug on top of managing the die off of your tumour cells. With CLL, there's a sweet spot to start treatment, which your specialists consider you have reached. Leaving starting treatment for much longer will only make recovering your health more challenging.
I started ibrutinib in May, after being diagnosed muted deletion 13, not much else in July 2019. My labs were not crazy, but I was feeling tired. Was hoping to never need treatment but, not the way it worked out. Thus far, have had a pretty easy go of it with ibrutinib. I went with ibrutinib instead of acalabrutinib because, my MD pushed for it. He liked the longer term data. If I was to do it again would maybe go with acalabrutinib. Again though, have not had horrible side effects with ibrutinib. I would say, I feel better now that I did before I started treatment. No node external swelling, and labs that do not freak me out every time I see them
I believe that newyork8 is correct. The CLL expert doctors and the official instructions want everyone with CLL to start Ibrutinib with 3 x 140 capsules, and only reduce the dosage if there are no other ways to deal with side effects.
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There is some older data that suggests that us "big" guys need 3 capsules of Ibruitinib while the lighter mass folks (under 123 lbs) can reach a theraputic dose with 2 capsules (2.5mg/kg). But the experts have varying opinions about mass based dosing.
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Acalabrutinib has an entirely different dosing scheme, with twice per day dosing.
Thanks Dana, I had a sonogram of my nodes 6 months ago but at the time they were all swollen slightly, now I have 4 very swollen lymph nodes on the right side of my groin that are painful. If they are still this large Monday I am supposed to go in to see my oncologist.
I would definitely go and find out what is going on with your enlarged lymph nodes and ask about actual measurements. Some of mine abdominal nodes were painful, but no more. I have a follow up CT later this month.
Hopefully, they will be much smaller after over 6 months on Acalabrutinib 🤞🏻
My disease accelerated rapidly shortly after diagnosis and it caught me off guard. Unfortunately, I had no understanding of SLL/CLL at the time. I started treatment late due to a combination of the rapid onset of my SLL, my doctor being on vacation, his relative inexperience with CLL, delays getting testing results back, etc. long story short, it wasn’t pretty.
It sounds like two doctors have recommended that you start treatment and a couple of very experienced folks on HU have told you to be careful about delaying treatment for too long. Based on my personal experience, it is possible to feel relatively well one day and then to feel like you’ve been run over by a Mack Truck the next day. Please don’t wait too long before addressing your disease progression. There are many discussions on HU about starting treatment too soon but there are also situations where patients delay treatment and have a difficult time as a result.
Lankisterguy and AussieNeil aren't CLL doctors, but they probably spend more time reviewing current CLL trends and medical developments than most oncologists, so I'd at least listen to them very carefully.
I've been on both Imbruvica and Acalabrutinib, and can say that from MY experience, Acalabrutinib has few, very mild side effects.
Final note, "why NOT listen to your doctors?" They went to school for many years, and almost certainly know more than you or I about CLL - especially how it affects YOUR body.
Gary, I was interested in your experience since you've had both drugs and said Acalabrutinib had fewer side effects. Could you share your experience in more detail? I started Imbruvica (420 per day) and just had some diarrhea at first but by the 10th day I developed the rash, especially on buttocks and lower back. More disturbing I had the rash on my upper palate which felt like a sore throat, a painful lesion at the tip of my tongue and a small ulcer inside my lower lip. We stopped the drug and the body rash started to subside pretty quickly while the mouth issues much less slowly. After 4 days off drug my mouth still hurts some and looks red. I'll be seeing my hematologist in a week. I wondered if you had similar experience with Imbruvica and what your experience with Acalabrutinib has been so I can discuss with my doctor. Thank you!
BTW I did read that side effects seem to be worse in older patients (I am 82).
Also I should mention the drug seemed to be very effective. Within a few days my spleen which was hard and palpable softened up amazingly. Leucocytes in my blood stream increased as should happen as they leave the spleen.
My experience with both Imb. & Cal. is fading from my memory, as both stopped working for me - so I've switched to Venetoclax. But, from the deep recesses of my mind; 1) Imb. caused "moderate" diarrhea, while I'd classify Calquence's as "mild". 2) Imb. caused periodic red rash spots, mainly on my chest. But, they were only 1 or 2 at a time, never hurt, or even itched, and disappeared w/in a month, or so. Call had fewer, maybe only 1 every couple of months. 3) Imb. made my fingernail sort of like philo-dough, and very thin and weak. But, 5000MG of Biotin took care of that (after several months), and they never really hurt - just sort of "fell apart". No such problem with Calq. 4) And, oh yeah, Imbruvica caused Afib, which trashed my mitral valve, and required surgery to repair.
Like I think I said earlier, both drugs seemed equally effective on CLL, although Calquence was slower in bringing my CBC #'s into line. But, both drugs quit working for me - Imb after 2 years, and Cal after 1+. So, last September, I started the ramp-up to Venetoclax. If you're not familiar with this, you take one week each of the drug, starting with 20MG/day, then 50, then 100, then 200, and finally 400. I was deemed high enough risk, that they started me off in the hospital. The ramp-up in the hospital went fine, but after I went home near the end of week 2, I had Tumor Lysis Syndrome, basically (as I understand it) too many dead CLL cells, too quickly. Fortunately, except for WILD blood numbers, and EXTREME fatigue, I got through it rather quickly (a few days), and/o serious after-effects. Back in the hospital, they re-did the 50MG dose ramp-up, but then stopped as my WBC kept falling (from 8.7 to 3.5). Since October, they tinkered a tiny bit with the dose, but I've been doing fine on 3 to 4 pills per week (50MG pills). It's only been 5 months, but so far, Ven. looks very promising. Virtually NO side-effects of any kind (if you ignore the TLS episode), I feel good, & the WBC #'s are pretty good.
Sorry for the loooong answer to your simple question, but in my experience: 1) Calquence has fewer side-effects than Imbruvica, and 2) Give Venetoclax a try if you still have Calq. side-effects.
Thank you so much. I realize it was an old post but one of the only that mentioned side effect experience with both drugs. I'm glad you are still doing well after what sounds like quite an ordeal. I tried Imbruvica and things were going fine until the two week mark when I developed major rashes on my body and worse, on the upper palate of my mouth and the tip of my tongue. It was a mess and I had to go off. I'll be seeing my doctor Monday and now that the adverse effects are gone he may want to try it again at a lower dose, but I'll ask him about the Cal. Hate to lose the money for half a month's Imb pills but don't know if I want to chance it. Thanks again!
I noticed an old sideline post by Test_Tech about irregular heartbeat. If T_T is you, I might add that both Imbruvica and Calquence have been shown, and must list in their own literature, that they can & have caused Afib. If I remember the #'s correctly, Imbruvica was something like 16-20%, with Calquence perhaps half that (but that's still significant, to me). Venetoclax (I think), on the other hand, didn't even have enough to require them to report it. As I explained, I was one of the unlucky 16-20% who won a FREE surgery, paid by Medicare.
I thought this might be significant, in view of what you said about irregular heartbeat.
Hi Gary, No I am not T_T and don't have heart problems. For some reason I wasn't notified by email of your latest communication so I'm glad I happened to drop in. Since I wrote to you I had lab tests on Friday and saw my doctor this morning. He said I was "exquisitely sensitive" to the drug...I had all those adverse reactions but I also had a precipitous drop in my WBC from 80 to 23 and my platelets increased from 101 to 168. My spleen also decreased in size by a lot. So we're going back to W&W for 4 weeks and see what happens. If I have to go back on it will be at a much lower dose obviously. He hasn't used Calquence but is going to look into it for me. He had the impression that the improved SE profile referred to the heart. Thanks so much for your support. Lolli
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