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.
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.
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
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.
Thanks again.
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.
By the way again, after quitting venclexta how soon did your numbers go back up?
The white cells and Lymphocytes only took a couple of weeks to recover. Bilirubin has been high.
I thought we stay on venetoclax until it doesn`t work anymore?
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.
Why did you cut back to 200?
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
Taking 400 since Aug 17 and my neutrophils are anything between 0.02 & 1.00 most of the time.
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
When you went down to 200 did your lymphocytes increase a lot?
No they really stayed much the same, so maybe not directly dose-related in my case at least
Charlie Girl
Is GCSF painful like neulasta? I never heard of it before.
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
Could you tell me what your lymphocyte count is currently? I am wondering what is considered good.
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.
Zarzio (filgrastim) v similar to Neulasta (penfilgrastim)
Re lymphocyte count on V, mine is running at around 0.75.
I think the difference is that zargio is short acting. Right?
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 👍🏻
What are you neutrophils on 200?
On 1.9 at my last appointment two weeks ago
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.
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!
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?
yes I live in U.S. My bloodwork numbers they use here is 4-11, 000 normal , I meant 4.0! neutrophils 2.59.
Thanks. This is based on taking 100 mg every other day? What is your ALC?
I am going back on venetoclax and I want to move slowly to avoid side effects.
I was taking every other day-liked this then assistant told me go everyday. Now my albumin/ globulin is abnormal. Since most of hematologists is first time dealing with new drug I guess play Russian roulette because of decisions to adjust doses and stop/start doses. I always thought if stop it and start again then cancer cells get smart and find a way around it and med.stop working
I am going back on venetoclax. Wondering how you are doing on 100 mg every other day. What is your ALC and ANC?
Thanks,
Rich
when I went to doc last week instead of him seeing me he had an assistant see me -don`t know why-she looked at my leg and thought I had cellulitis so on antibiotic but she told me to go to 100 mg Venetoclax everyday. WELL, when I did I couldn`t lift my left arm and my leg swelled and the rash increased. So I didn`t take it for two days, symptoms subsided then I cut pill half(yeah I know not supposed chew, crush pill, or cut pill) took 50 mg for two days and didn`t have any pain or swelling then went to 100 mg and of course arm started hurt leg swelled and rash spread to foot-have some sort of pimples under skin with red spot appearing on surface can`t bend leg at knee. Swelling is less because antibiotic working on infection but cancer drug aggravates it-catch 22! No lymph swelling at all. See doc today-still have abnormal shaped red cells-seems always when on treatment very low TIBC.
Yes, it is a trail and error for all of us. I think it is important to look at your lymphocyte count (ALC). What is that on 100 mg every other day?
0.81 lower than last week but I was still on every other day since I was told to start everyday last week but ran into trouble as I explained previously. So not sure the drop due to every other or everyday since I stopped pill then started at 50mg then went to 100mg. I don`t know if I have the guts to tell the doc what I did but he decided to put me on every other day originally and I have to protect myself from harm as these drugs can play havoc on our system
It is such a tough call. I am going through something similar. I don't think anyone has the answer, including doctors. The big question to me is "If the ALC is below 1, is that enough? Or is more better?" Perhaps get your doctor's opinion. I will do the same?
my hematologist told me I am his first for venetoclax. I know he`s dealt with ibrutinib because I have a friend who is on ibrutinib. They always say you need a bone marrow biopsy to know for sure if truly in remission and one for me was enough! I go by how I feel. when my cancer is active-have certain signs. My spleen is slightly swollen so things not quite right yet plus bloodwork is still slightly off
What was your previous ALC (lymphocyte) when you were doing every other day?
By the way, why don't you get a script for 50 mg rather than doing 100 mg every other day?
do you know how long it took just to get a bottle of 100mg? Between the screw up with specialty pharmacy and insurance approval how could I wait for a bottle of 50mg?! This week I saw my hematologist. He said numbers are alright-ANC & ANC and some of the abnormality in other areas of bloodwork is due to my body response to inflammation namely my shoulder and lower leg which has some hives behind knee cap. Stopping the med and going back 50mg then taking the 100mg helped improve side effects I am having-the rash sometimes feels like a burn and if I`d known it was hives I could have taken a antihistamine at the start and possibly not get the swelling, hives and rash at ramp up. By the way the side effects became worse when I went from 50mg up to 100mg originally when I was still on the Venetoclax pack. My leg is improving only a path of rash spread to top of foot between 2nd & 3nd toe, but no new developments!
You say you were on Ibrutinib. Do you mean at the same time as venetoclax or before it?
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!
What are your neutrophils on 200?
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.
What are your neutrophils now?
Is GCSF painful like neulasta? I never heard of it before.
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.
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?
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!
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?
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
allopurinol
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!
Do you mean your creatinine was too high?
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!
Follow your alc (absolute lymphocyte count) and your anc (absolute neutrophil count) - parts of the WBC, not the WBC itself, and not the percents. It will give you a better picture of what’s going on.
It is a tough call. When I was on 400 mg the ALC was about the same as when I was on 200 mg (about .8). However, my hemoglobin and ANC were significantly lower. The question is whether there were fewer tumor cells on 400 mg; we would need flow cytometry for that. I am going back on venetoclax and may ask the doctor to do more flow cytometry.
yeah, they`re both doing good.
yeah in normal range now but boy when the WBC go up I know my cancer is active again and much tumor burden, this is my gage when I am in watch & wait phase and blood tests are done every three mo. or more.
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
Are you still on 150 mg? How are things going?
Saw my Dr today. WBC great, HCT, Hemoglobin, platelets, LDH. Everything is great. Dr. said this is the best dose for me. Everything is great....And staying there.
Glad to hear it for your sake and mine. I am doing fine on 200. My alc is almost too low (0.37 on last test), but other numbers are okay. Yet my doctor wants me to bump to 300. I can't see it.
Seems some doctors (yours) believe each person has a dose that is best for them, while other doctors just push to that 400 used in the studies.
Do you take anything else like rituximab or acalabrutinib?
I was lucky enough to convince them that I was happy at 200 (and then 150). I react strongly to drugs, and yes, I am an individual...not a study number. Good luck to you! And no, I'm on nothing else
The real question is whether we would have a better chance at MRD negative with a higher dose. No one knows. However, another member just sent me a private note saying that they achieved MRD negative on 100 mg of venetoclax.
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.
After Obinutuzumab- Gazyva - finiished In June 2015, my ALC bounced around - @.7 to.8 - and my HGB hovered between just under and barely in range. My hematologist was not concerned, though it admittedly was beginning to concern me. This April is the first time all of my numbers were back in range. We all process all aspects of treatment differently. It would be nice to have a simple chart of absolute time lines, normal , expected reactions, and perfect counts, but life is never that easy.
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.
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.
Yes I am also. I had less side effects when I took intravenous chemo. I`d have nausea for two days then I fine rest of month. When my doc told me the pimples on back of knee cap were hives I took an antihistamine and they went away. So I am going to take it again to see if rash go away also.
do they have 70mg in ibrutinib? I tried two pills then one-didn`t matter-worse drug I ever have taken-I wonder if acalabrutinib is more endurable?
Hi Yes there is 70 mg pills but pharmacy will issue as 140 mg (broken down to 70 mg) so you will theoretically speaking get 2 months supply. I hope that makes sense. I started Acalabrutinib 2 weeks ago. Only 100mg per day. So far everything looks good and only mild bone pain at times. Most interesting thing is that when I had my blood work just now my platelets went from around 100 for last 4 years to 167 the best since my chemo.
Why are you taking only 100 mg daily? I am supposed to go back on acalabrutinib and am thinking about doing that also.
Because of the side effects I had on Imbruvica. I am very sensitive to medications.
Yes. Me also. Imbruvica landed me in the ICU, and I had heart palpitations on acalabrutinib. Because of the bad experience with imbruvica, I finally stopped acalabrutinib. I probably should go back on it. My doctor wants me to take 200, but I am pretty sure I won't.
Is yours heart related?
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