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CLL Support Association
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Anyone doing 200 mg Venetoclax instead of 400 mg?

My numbers are all good on 200 mg venetoclax including very low ALC. Whenever I bump to 400 mg my neutrophils go too low.

Different people absorb and metabolize drugs differently. E.g. I do fine on 6.25 mg atenolol, while most people take at least 25 mg.

I am thinking perhaps 200 mg is the optimal dose of venetoclax for me. I am wondering if anyone else stayed at this level.

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Yes I stayed on 200mg for 5 months and then my whites and lymphocytes went way too low. Have been off Venetoclax now almost 5 months and my bloods and lumps have been good since. Through the ramp up my nuetrophils went low but was kept at a lower dose until they recovered. I was only able to stay on Ibrutinib for a year. Have also had a lot of other treatment.

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Thanks much for the reply. Did you stay on 200 because 400 drove neutrophils too low? Or did you not even try 400?

Best,

Rich

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I never got to 400mg, stayed on 100 for a few weeks then 200 for 5 months. Had low platelets at the beginning to. Just dont seem to like the high doses. Had to cut down FCR as well as Bendamustine Ritux. Nothing seems to work too long for me, have had CLL 20 years, hoping the amount I have had of Venetoclax will keep me in remission but can always have more. Can’t have Ibrutinib ever again.

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Thanks again.

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By the way Ibrutinib had a horrible effect on me after 3 weeks, and I switched to Calquence. I had PVCs on calquence (not that many; less than 1%); so I decided to switch to Venetoclax.

My point is that calquence actually worked for me whereas ibrutinib did not. So, that might be another option for you.

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By the way again, after quitting venclexta how soon did your numbers go back up?

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The white cells and Lymphocytes only took a couple of weeks to recover. Bilirubin has been high.

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I thought we stay on venetoclax until it doesn`t work anymore?

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Yes I take 200 mg instead of 400 but I took 400 for almost 1 1/2 years. I also only take 280 mg of Ibrutinib. All my numbers are good and I'm MRD and have been for at least 6 months. I've been in a trial at M.D. Anderson since late 2017.

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Why did you cut back to 200?

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I was finally cut back since I was having issues with diarrhea. And yes I started Ibrutinib at full dose and since I was in such deep remission, the doctor decided to cut me back.

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Did you ever take more ibrutinib?

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Hello PK. Is your trial a Phase I trial to discover best dose levels? I notice you mention changing doses in ibru and veneto. Is your trial looking at both meds together?

Best,

Bud

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I think my trial is looking at the combination of Ibrutinib and Venetoclax. I don't think dose levels are involved. I know someone else that started the same day I did and he hasn't lowered his dose.

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Taking 400 since Aug 17 and my neutrophils are anything between 0.02 & 1.00 most of the time.

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Have you thought about cutting back?

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Mine just dropped to .55. How do you handle neutrophils always being so low? I am mostly staying inside and wearing a mask when I go out.

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I started ramp up 8 months ago and neutrophils started dropping when I reached 300mg. Despite this I went up to full dose, supported by GCSF and stayed on this for a couple of months. Then reduced to 300mg but still needing GCSF weekly. Felt really well.

I misunderstood plan at consultation 2 months ago as consultant just mentioned that reducing further might be an option. I wrongly reduced to 200mg and felt less well, with sweats back several times a day. Neutropenia continued and still needing weekly GCSF. After 3 weeks I went back to 300mg and within a few days felt much better - and neutropenia no worse.

10 days ago I had an emergency admission with a fever. All came on incredibly quickly - after a v full day. Assumed to be viral as 5 days iv antibiotics made no difference. Needed a bit more GCSF and In dropped but gratefully home again and doing well.

Incidentally I had to have a reduced dose of ibrutinib because of other side effects. Took just 140mg daily for 2 years and it controlled things well.

I don't know how long GCSF can be continued, but am revelling in feeling better on venetoclax.

Best wishes

Charlie Girl

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When you went down to 200 did your lymphocytes increase a lot?

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No they really stayed much the same, so maybe not directly dose-related in my case at least

Charlie Girl

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Is GCSF painful like neulasta? I never heard of it before.

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No, while I haven't been lucky enough to start IVIG yet (because local guidelines so tight) GCSF which I have as Zarzio is easy. Shown technique which is subcutaneous injection into abdomen. Needle slides in so easily and I usually feel nothing. Some people get flu like symptoms for a few hours afterwards and so it's given in the evening. I have had nothing.

Kept in fridge at home.

More scarey thinking about than actually doing!

Charlie Girl

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Could you tell me what your lymphocyte count is currently? I am wondering what is considered good.

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Is zarzio short acting? That is, do you need to do it every few days? I may need something like that instead of nelasta, which I have in my refrigerator.

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Zarzio (filgrastim) v similar to Neulasta (penfilgrastim)

Re lymphocyte count on V, mine is running at around 0.75.

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I think the difference is that zargio is short acting. Right?

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Same situation for me! After ramp up to 400mg neutrophils kept dropping too low so decision made to reduce to 200mg for the duration of my trial (I’ll stop Venetoclax after 1 year). I was also on Ibrutinib and Obinatuzamab Currently all numbers normal 👍🏻

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What are you neutrophils on 200?

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On 1.9 at my last appointment two weeks ago

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Thanks. Funny. Mine were 1.81. Then I bumped to 400 and they dropped to .85.

I really think different people absorb and metabolize all medicines differently. E.g. effect dosages of diovan range from 40 to 360.

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you`re right about that. I reached normal wbc .04 with normal neutrophils at 100mg! right now I`m taking one 100 mg every other day for now-swelling has gone down in my neck but leg still swollen, have see nose, ear throat doctor because my sore throat won`t go away!

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Did you mis-state your wbc? If neutrophils are normal, your wbc must be at least 2. What is your absolute lymphocyte count.

I am assuming measures used in the US. Perhaps you are not. Is that the reason for the .04?

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I did the Venetoclax ramp up to 400mg but developed severe neutropenia so, 6 months into a 2-year trial of Venetoclax alone, my dose was reduced to 300mg. Three months later I came down to 200mg and things are going well. I’m “clinically in remission”. It’s a wonder drug!

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What are your neutrophils on 200?

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1.9 mid April, 2.0 on 14 May. Bottomed out at 0.3 in September. At that point I stopped taking Venetoclax for 1 week and started G-CSF injections 3x weekly. I resumed V at 300mg. (I checked my dates.) I dropped to 200mg in November so I’ve been on that dosage for 6 months.

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What are your neutrophils now?

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2.0 on 14 May.

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Great.

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Is GCSF painful like neulasta? I never heard of it before.

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Neulasta is just one of the brand names for G-CSF. Minor bone pain was my only issue. I had to learn to self-inject which was interesting at the beginning.

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They told me one neulasta injection would last for 3 weeks, but you said you injected 3 times a week. Why did you need to it so often?

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I simply followed instructions! It definitely worked for me. I can’t give you the name of the medication because it’s in my fridge at home and I’m currently in Japan!

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I just found out I am .55. I am quitting venetoclax for now. How soon after learning you were .3 did you start injections? Did your doctor have them?

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Someone in this thread mentioned aliperinal (sp). You only need to take it while ‘ramping up on any of the drugs. Please talk to your doctor

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allopurinol

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because I had sudden cell destruction that happened while I was NOT on cancer treatment and my creatinine was low. my uric acid was high and my GFR was 40 I`m glad my doc put me on allopurinol It saved my kidneys!

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Do you mean your creatinine was too high?

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I don`t remember but it wasn`t normal but my doc started me on venetoclax in the hospital so that I could get steady saline solution with the venetoclax. It worked my kidney function is now normal and I made it fhrough the first week on venetoclax. for some reason my uric acid level was high during first week that is why I was taking allopurinol. my doc wants me to stay on it until end of this month. I don`t agree with him but I`m taking half dose 50 mg. when I started it in preparation for venetoclax(had 250,000 cancer cells) I was feeling real good and then I got Pneumonia ended up in hospital when they did my blood count I had lost 100,000 cancer cells(that`s why I asked if this ever happened to anyone else!)I was put on allopurinol because of high uric acid due to the bursting cancer cells, to protect my kidneys from harm as my gfr was at 40 In I week I gained them back. Got out of hospital-again out of blue I lost another 100,000- (my hematologist was worried by this time) but still on allopurinol-good thing didn`t know I was going to lose another 100,000 wbc! There was a three week span after the pneumonia incident and then I started venetoclax but I was only at 88,000 cancer cells and having sweats, hgb, plt dropping, not feeling well. So far I am at 100mg venetoclax only had left leg swelling which started way before when I began taking allopurinol but when I started the cancer drug it would increase leg swelling and I had a rash appear. Now the leg swelling is gone. my only problem is I could not swallow-it started after I got out of hospital-felt like lump on neck muscle left side so painful could not swallow. I was already up to 50 mg venetoclax-would get a fever tiredness then passed but swallowing problem continued doc looked my throat thinks I have thrush-don`t see sign of it in my mouth but can`t see down the throat like he did so put me on Nystatin. Its been four days and I don`t see much improvement personally I think it is more likely I have strep! My body just loves bacteria! I am very close to having normal white cell count-by next blood work should be in normal range by then. Only other weird thing was when I was on 50mg venetoclax my wbc went up but then next week went down and is at 19,0000 and hope dropping. My gfr is at 60 now!

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I ramped up to 200mg Venetoclax. Stopped there because my numbers were great. After 4 months my WBC was too low, as were my platelets. 2 months ago I dropped to 150mg, and everything is great. WAY better drug for me than Ibrutnib

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You say your numbers were good. What was your ALC (lymphocyte count) when you stopped at 200 mg?

My ALC is about 1 on 200 and .8 on 400. I don't see a big difference.

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Thank you for this post. I have been on 140mg Imbruvica. My numbers are great but having side effects with rash and joint pain. I am starting today on 70mg with doctor's approval. I would like to switch or ad Venetoclax but I am very sensitive to medications and would like to do lower dose.

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As I said at the start, people absorb and metabolize medicine differently. So, it seems there is not one dose fits all. You have to find the dose that works for you.

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