thoughts on brukinsa treatment

[Reetywell71]

Hi ALL from Florida. 1st follow up after June diagnosis. Blood work remains 99% perfect and still feeling physically normal but mentally I have struggled. Getting slowly better with that. I was started almost immediately on a slightly decreased dose of brukinsa after my ct scan which showed a 6.3 Superclavicular node and other nodes in neck and chest area but yet I read in this forum that some are still on WW with that scenario. Any thoughts on this. My doctor said the enlarged node was the indication to treat. Side effects are minimal so far. Ct in 2 months. Any thoughts on this?

[BigfootT]

Hi Reetywell71, It sounds like many of us you have a SLL presentation as I do. I believe the treatment guidelines give a fair amount of physician discretion on this. My understanding is 10cm is the upper limit, but anything between 5-10cm or considered "bothersome" can drive treatment. 6.3cm in that area does sound a bit concerning to this novice SLL patient.

Bigfoot

[cajunjeff]

Hello Reety. Here is the applicable clause from the iwcll guidelines:

Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.

So as I read this phrase you have one very objective criteria (massive node > 10 cm ) and two very subjective criteria (progressive lymphadenopathy or symptomatic lymphadenopathy).

You do not meet the objective criteria as your large node is still not near 10cm. You might meet the other, more subjective criteria, if your nodes cause you problems or if you have many nodes popping up and spreading to other lymph nodes.

If your doctor specifically told you that the size of your 6.3 cm node was the only reason to treat you, that would not appear consistent with the iwcll guidelines.

That said, I agree with Bigfoot that the guidelines afford your doctor great discretion. It would be hard for anyone on here to second guess your doctor as he would know all about your tests and trends and have clinical experience to know what they mean, we only know the little bit you wrote and lack his clinical experience (but for I guess any doctors we have on here).

I tend to think the direct approach is usually best. You might consider just telling your doctor that you read the guidelines that say a 10 cm node is the cutoff and ask him if he agrees with that and if so, why start treatment now? It might be as simple as him believing that your ct scan, perhaps compared with a previous scan, shows rapidly advancing lymphadenopathy which he thinks immediate attention.

I think there is a way to ask our doctors to explain their treatment recommendations for us without appearing to second guess them. I think we have a right to know. I am fortunate in that my doctors take the time to answer all my questions.

Here are the complete iwcll treatment 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.

ashpublications.org/blood/a...

[Reetywell71 in reply to cajunjeff]

Thanks Jeff. What does iwcll stand for? I don't seem to have the criteria listed above. Like I said my lab work, cbc, metpanel, LD were all within normal limits and asymptomatic. I did have enlarged lymph nodes above and below the diaphram but not measuring as large as the 6cm one above my clavical. So I will trust my hematologist/oncologist at MD Anderson, stay on the reduced dose of brukinsa since it has not yet given me side effects and I will be scanned in 2 months. My clavical node has shrunk somewhat at my recent appointment and I still feel physically well so we shall see I guess. Mentally taking baby steps

[AussieNeil Partner Administrator in reply to Reetywell71]

iwcll is the International Workshop on CLL diagnosis, management and treatment guideline document. There are also ESMO (European) and NCCN guidelines. They are updated and used by specialists the world over, to ensure that doctors can keep up to date with the latest recommendations for CLL patient management. This post covers them: healthunlocked.com/cllsuppo...

Neil

[cajunjeff in reply to Reetywell71]

Reety, iwcll stands for “ international workshop on cll”. Among other things, this workshop established treatment guidelines and triggers to treat cll. To my understanding, these are not hard and fast rules to follow, just guidelines to assist doctors in using their clinical experience and judgment.

If you are treating with a leukemia doctor at MD Anderson, I think there is a very high probability you are getting sound advice on your treatment.

It appears from your post that you are still unsure of why you need to treat now. I would consider if I were you just asking your doctor why? I am on my third doctor at MD Anderson (my first retired and my second transferred home to Australia). As someone who prefers understanding my treatment strategy, I have on most every visit has a small handful of questions to ask. My experience in this regard was most positive, all three of my doctors took time to answer my questions. I keep questions to a minimum in respect of their time.

I strongly suspect your doctor had sound reasons to start you treating now. The best way to find out is to ask him. If you have come to the conclusion just to trust him and go with it, I wouldn’t argue with that. I think all of the doctors in the leukemia dept at MD Anderson are highly qualified and have cutting edge knowledge. And I think brukinsa is the best of the btk drugs. I was on ibrutinib and switched to acalabrutinib. They both worked great for me, but from what I have read, brukinsa works just as well with less side effects.

Here are iwcll guidelines:

ashpublications.org/blood/a...

[SofiaDeo]

Many docs use guidelines for treatment (for a number of diseases, including cancer) as the absolute outside limit as to how long to wait. There will be individual patient factors that treatment algorithms won't be able to address, as to why starting treatment sooner may be advisable. Ask your doc why they think *you* need to start.

I'll note that depending where a particular lymph node happens to be, can be a factor. If it appears any major blood vessels are getting squeezed, that could definitely call to stop the squeezing ASAP, especially for vessels affecting blood flow to the brain. You don't want to wait until you have symptoms from impaired brain blood flow before starting treatment IMO.

[Reetywell71 in reply to SofiaDeo]

Thanks Sofia. My largest node is supraclavicular which isn't pressing on any vital organs, but she felt it is likely to get larger and the size is an indication to start treatment. It has shrunk already but not totally gone. I will be scanned in 2 months so I'm hoping to have more shrinkage of nodes. Fingers crossed

[Nana1961]

Hi Reetywell71,

I started Brukinsa in July after 3 yrs W&W. My bloodwork was trending towards treatment recommendations. Unfortunately, my lymphnodes got enlarged in my pelvic, kidney and pancreas area causing pain and possible kidney problems.I’m on full dose Brukinsa, 160 mg a day. Sone side effects such as diarrhea, sores in my mouth and a little achy. Overall doing well and feeling better. Wishing you the best with your treatment regimen and your CLL.

[Reetywell71 in reply to Nana1961]

Thanks. My understanding of full dose is 320mg I am on a decreased dose of 240 3caps of 80mg

[Nana1961 in reply to Reetywell71]

Oh! I’m on 4 80 mg daily.

But, I’m in Orlando area too!

[LumpyJeff816]

Good morning! Similar situation for me, at diagnosis I had a cluster of neck nodes that were 4-5CM. We went with watch and wait but it pretty much became "watch them grow and cause trouble", although I have the unmutated type which is more aggressive. I had two rounds of "baby radiation" to spot treat the neck (largest node got to 14CM ultimately) while waiting for a trial to open near me. It opened at the right time, as the nodes were causing issues with jugular vein, swallowing, breathing, etc.

The trial is Brusinka and Sonrotoclax, and the Brusinka alone within 1 week had resolved almost all of my node issues. I was so impressed with the Brusinka I considered the fact that I could likely take it for YEARS with almost no repercussions. I've not had side effects from the drug, it's worked extremely well, and I haven't thought much about having cancer again since May. I've completed the Sonrotoclax ramp-up phase and haven't really had any problems with it either.

I am 35, so the fixed duration treatment makes sense. But if I was 71, I would feel VERY comfortable about Brusinka likely taking care of me for the rest of my life. As for the mental? I tell myself all the time, "of all the cancers to have, there aren't many I'd prefer to have over CLL/SLL". It's highly treatable, our options are expanding, and our life expectancy is increasing!

Best of luck to you, have a great week!

[Nana1961 in reply to LumpyJeff816]

Thats great! I was waiting for same trial at Moffitt Cancer Center but it was delayed. Not sure if it’s even started now. I really wanted to do that. The Zanu is working well. I have just started having back and rib pain which the chemo pharmacist says it’s very common at about 8-12 into treatment. I’m at 10 weeks now. Where is your trial?

[Reetywell71]

Thanks Jeff for your encouragement. You shed some light on the fact that the superclavicular node could eventually cause trouble and an indication for treatment. Best wishes to you!

[GMa27]

Did you get a second opinion? I would suggest going to Mayo in JAX for a back up. I live in southeast Florida. There is a Dr. Tang in Springhill area that another member of this group goes to. Not a fan of Moffitt.

[Reetywell71 in reply to GMa27]

Yes I did. I still had WW option but my doctor at MD was recommending treatment so I went with that. Thanks!