Fatigue on Venetoclax

[Stevediam]

Hello all,

For those of you that have experienced fatigue on venetoclax, I’d appreciate some of your stories. Currently on day 5 of 100mg and have primarily been sleeping 14+ hours each night and taking an hour or two nap each day. Very weak, very tired

I’m also 2 days removed from a 10 day stay as an inpatient at Upenn and have had 2 doses of rituxin and a 4 day dose of steroids while admitted as well as IV fluids all 10 days. Blood levels also low. Obv there is a lot going on but I’m thinking this abnormal amounts of sleeping is from the venetoclax.

No fever, no issues with urination or bowel movements, appetite not great but there, drinking 4-5 16oz bottles of water per day. All lab work has shown good kidney function and no TLS. Only other issue is a progressive loose cough which brings up some phlegm at times.

Does this fatigue pass? When? Will the 200 and 400mg dose be even worse?

Thanks for any and all input & happy thanksgiving to all.

[Hidden]

I began venetoclax ramp up on 11/15/16. I lost my appetite and

consequently weight, had constant fatigue, gout, contracted pneumonia

and was hospitalized for seven days but was able to dodge TLS and

after two interruptions finally made it to the 400 mg. dose

after eight weeks and multiple blood transfusions. My numbers

plummeted and another interruption.

March 2017 began 200 mg. dose and have remained there and

will never be able to tolerate the full maintenance dose.

I have > than 5 poor prognostics including 17p/tp53 deletion,

complex karyotype, IGHV unmutated, Beta 2 MG of 4.5 and

more. I have been evaluated for an allogenic stem cell transplant

and despite having a 10/10 biological sibling match have

made a personal decision to decline.

The important thing to remember is that CLL is different in

all of us and statistics are for groups and not individuals.

While 17p deletion brings with it a bleak outlook, the landscape

of CLL is changing rapidly with the advent of new drugs

like venetoclax, Ibrutinib and the next generation rituximab,

obinituzimab.

(I recently completed six, once monthly, rituximab infusions)

You have to stay the course, keep pushing forward and not

let this insidious condition which bonds all the great folks on

this site beat you.

VENETOCLAX WILL HELP YOU. I AM ULTRA HIGH RISK

AND TELL YOU NOT TO LOSE HOPE, BECAUSE I HAVE NOT

I am sending you all my good and positive thoughts to you!!

All the best,

Nick

60 y/o

Miami Beach, Florida

[CattieAnne in reply to Hidden]

Thank you, Nick! It seems we are the same age. You courage is a blessing for you and all who read! You are an amazing soul! God bless.

CattieAnne 💖

[Hidden]

I just realized I never answered your original question.

Yes, it will get not only get better, but much better.

Venetoclax is awesome and the venetoclax/rituximab

combo has given me a powerful result and I feel

better than I have in two years.

I have strength, stamina and a great outlook.

I work six days a week at least 10 hours a day and love

every minute of it.

Nick

[Debinoz]

Hi Steve - congrats on being on this awesome drug - I'm 2 years in on one of the combo trials and still take 400mgs daily. Just to reassure I experienced extreme fatigue with each dose escalation for about 5 days each time but then my body adjusted and I no longer have any fatigue - you might want to check out my blog which followed my trial - I'm pleased the protocol of hospitalisation is no longer as arduous as it was for my cohort but only a couple of hundred of us had ever tried the drug when I started it! The blog is abtandme.com. I'm still MRD-, working full time, am typing this while having a glass of wine and my life is completely normal! Good luck.

Cheers

Deb

[Yvbb in reply to Debinoz]

I am so happy I ran across your blog, Deb! Great respect for your stamina and openess! And so glad that your treatment seemed led to MRD-! Thank you for all that you have shared with other CLL patients like

myself.cheers.🍷

[Debinoz in reply to Yvbb]

Thanks Yvbb - I really appreciate it - I just felt having won the lottery in a way by getting on that trial I owed it to other patients to report my journey from that point and give hope. I'm not very good at updating it now but I do try to when I have news and my next bone marrow biopsy is in 3 weeks so will update it after that. Hope you're well. Cheers Deb

[profrich in reply to Debinoz]

I just posted that I am finishing 3 week and have good numbers (alc 360; hemoglobin 11.4; it was 10 before I started). However, I have bouts of extreme fatigue, usually in afternoon. Could you tell me how soon after starting treatment your fatigue cleared up? Also, were you fatigued early on even though your hemoglobin was okay?

Thanks,

Rich

[profrich in reply to profrich]

alc is 3600, not 360.

[profrich in reply to Debinoz]

I am experiencing same fatigue. Just took first 400 mg dose yesterday. I also noticed my hemoglobin went down after each escalation but rebounded some the following week.

How was your hemoglobin during the first 5 weeks? When did it finally go up to a good level (say greater than 12)?

Thanks,

Rich

[8700paul]

Hi Steve. I recently started venetoclax , had the 5 week ramp up and have been on 400mg for about 2weeks now. In answer to your question , i had fatague before i started Venetoclax and it HAS NOT increased ,what so ever.. My only side effect so far has been constipation. Best of luck in your treatment,I feel it is a good drug.....dx 9/2016 53pmutated, unmutated ivgh, hi karotypes

[Nicebaps1]

I've been on it since late July and currently on full dose of 400mg a day. Yes I do get tired but try not to sleep during the day if I can help it. I've developed a cough and sore throat over the last couple of day but nothing serious (yet). Fatigue is a common side effect. The other thing I try and do is to drink plenty of fluids.

[lankisterguy Volunteer]

Hi Stevediam,

I did the dose escalation in June 2016, and was very fatigued before starting treatment, my two 30 hour periods of hospitalization for the 20 mg and 50 mg doses made the fatigue worse. But as I moved through 100, 200 to 400mg, my red blood numbers improved and the fatigue was gone (along with my enlarged nodes) by week 6. I was MRD neg at week 29.

I needed far less sleep after the dose ramp up than I did before (6 hours per night vs. 8 ).

But I have heard that some others don't get that benefit- so YMMV (your mileage may vary).

I hope it resolves for you and you get to enjoy having your life and energy back.

Len

[profrich in reply to lankisterguy]

I find that my red blood numbers are worse after 4 weeks (now) than they were a couple of weeks ago (but still better than when I started treatment). Did you experience something like this? I hope the improve by week 6.

[Stevediam]

Update:

CLL treatment with Ven has been put on hold for 4 days now. I was admitted on Friday with platelets of 5k and hemog of 7.2. Infusions don’t raise my numbers at all. Currently on IV steroids and switching to oral tomorrow and have been on 75mg’s of promacta for 3 days now (platelets at 17, hemo 8.8)

Dr’s don’t know cause. Bone marrow showed 50% CLL, but plenty of good marrow that should be producing good cells. It could be ITP, reaction to VEN, the CLL or my slightly enlarged spleen.

Splenectomy has been discussed but as a 72 year old with heart condition, CLL, low platelets, and overweight, I’m a horrible candidate for a surgery.

Have had two infusions of rituxin last week that didn’t help. The only thing that raises plates are the steroids which are not a long term answer and raise havoc on my blood sugar.

I’m hoping promacta kicks in and I’ll be able to start VEN again, but right now feeling very depressed and not very hopeful or confident the team knows what to do.

Looking for any input from all the experience that’s out there, I need it

Thanks

[lukejensen27]

My platelets were down to 18 after I started Ibrutinib and Promacta raised them to over 100 in a week and up to around 350 within a month. Then I started tapering off to every other day and they stayed around 275. Then every two days and they stayed about the same. Reduced to one a week and they were around 200. I’m now off them for about two months and my lab work had them at 122. Im on the Ibrutinib and Venetoclax trial at MDA. Im heading back there tomorrow for my 3 month check up. Hoping they haven’t dropped any further. Promacta worked very well for me.