Taking venetoclax and having a difficult time

[Jamstev71]

I took imbruvica for 3 years and it stopped working. They started me on venetoclax and ramped it up to 50. My counts got so bad the doctor has temporary taken me off venetoclax. How long on venetoclax before you get to feeling better. This medicine is something else. I have never been so sick.

[Hidden]

what does counts so bad mean, my numbers kept falling as i took it. are yours falling or rising?

[Jamstev71 in reply to Hidden]

My hemoglobin is in the low eights, white count about 3, and platelets around 20

[Hidden in reply to Jamstev71]

what did they drop from?

[Jamstev71 in reply to Hidden]

My hemoglobin was in the 10, platelets about 70 and white count was up to 52.

[AussieNeil Partner Administrator in reply to Jamstev71]

That's a good white cell count, so there can't be many lymphocytes left (which is what you should be checking) along with your neutrophils (which protect you from infection).

In Australia, red blood cell infusions to reduce your anaemia, are given when your haemoglobin falls below 80 (8 in your units). Likewise platelet transfusions are given when your platelets fall below 20 if you have an infection and your platelets fall below 10. You are unlikely to be feeling sick due to low platelets unless a bleed somewhere is reducing your haemoglobin. Please see your doctor(s).

Neil

[writepa in reply to AussieNeil]

My husband took venetoclax for about a week now and his LDH increases from 130-170 level to 270. Upper limit is 235. Do you happen to know why?

[AussieNeil Partner Administrator in reply to writepa]

In my experience, the most common reason for an increase in LDH is a poor blood draw or poor processing of the blood sample. That can rupture cell membranes, thereby discharging the higher amounts of LDH inside cells into the blood plasma, artificially pushing up the result. It might be due to CLL cells dying from the venetoclax treatment, but I haven't seen that mentioned in literature. I recommend your husband ask his specialist about this and also check if the next test is also high. I personally didn't see a marked increase in LDH when I commenced venetoclax, but my tumour burden was much reduced by then from Acalabrutinib/Calquence and Obinutuzumab/Gazyva.

Neil

[writepa in reply to AussieNeil]

Thank you, Neil. I’ll check with doctor. how are you doing so far with the trial? platelet increases?

[AussieNeil Partner Administrator in reply to writepa]

Given this is an unlocked post, I'll direct you to my profile, which I updated today, but it's good news. healthunlocked.com/user/Aus...

Thanks for asking.

[PaulaS Volunteer in reply to AussieNeil]

Thanks for the update, Neil. Great to see things going well for you at last, after so many complicated ups and downs...

Paula

[Chillo in reply to AussieNeil]

Hi NEIL. Wish you doing well. 🙏 I just want to share with you about the news on my husband treatment.

Recently I mention that Dr was going to switch Imbruvica to Venetoclax fue yo allergic reaction. He never start this Medication since it was not approved . So now Dr recommend calquence.

My husband started calquence yesterday. I am praying to God that his body accept this medication well and not complications.

Any recommendations to avoid during calquence treatment?

Thanks again and God bless you.

[AussieNeil Partner Administrator in reply to Chillo]

Hi Chillo,

Wishing your husband an easy experience with Calquence. As it is a second generation version of Imbruvica with a lower side effect profile, the same considerations apply as with Imbruvica. The major difference is that your husband will need to take two tablets per day about 12 hours apart, so there's not the option of finding out whether taking it in the morning or evening works best.

Neil

[Chillo in reply to AussieNeil]

Thank you NEIL.

[AussieNeil Partner Administrator in reply to Hidden]

Jamstev,

Ivotedfornixon's question is very pertinent. What were your haemoglobin and platelet counts in particular before you started Venetoclax and when you stopped? Your bone marrow may need the CLL cleaned out more before you begin to feel better. Also, it would help others respond if you explained how you've been sick since starting Venetoclax. I've just been extra tired and have just started on 200mg/day.

You might also get more answers if you edit your post to make it private to our community: healthunlocked.com/cllsuppo...

Neil

[Jamstev71 in reply to AussieNeil]

The hemoglobin was mostly in the 10-11 range before venetoclax, my platelets were running around 60-70. I am so weak I can barely walk and my heart is beating very fast. Laying down has been in the 90's.

[AdrianUK in reply to Jamstev71]

You should definitely be speaking with your doctors about your condition. You might need a transfusion. And you definitely need regular blood tests to see what’s happening.

The challenge here your doctor will be walking around is that both the CLL and the treatment can affect the bone marrow. They will have to decide when to withold treatment when to give booster shots or transfusions and when to re start it.

Hopeful your doctor is an expert and there’re should be able to give you good advise. But anaemia that is severe is no laughing matter and you might need to be admitted if you are feeling so bad. Hopefully you’ll begin to feel better when your counts are more normal.

[PlanetaryKim in reply to Jamstev71]

Sorry you're having these problems. I'm just starting venetoclax myself. Am on 100 mg right now. I know in the past, when I was very anemic from CLL, my heart started beating rapidly - and I became arrhythmic then. Please report all this to your doctor. I'm sure you are. I hope your situation improves soon!

[cajunjeff in reply to Jamstev71]

Jamstev I wish I could weigh in on the venetoclax side effects. I have not taken it and can only offer from what I have read on here that most people don’t have bad side effects on it. Neil has a good take, maybe your marrow will kick in after it recovers from being cleaned out.

I can relate to the low hemoglobin and how profoundly bad that can make you feel. Mine was 7 at its lowest. I assume you are in contact with your doctor and discussing transfusions with you that can boost you until your marrow recovers and gets your platelets and hemoglobin up. Folic acid can’t hurt if your doc agrees.

The main reason I chimed in was just to wish you luck and tell you to keep your chin up. My hemoglobin recovered and I don’t see why yours can’t too. I hope you start feeling better soon.

[turkey2]

I don't remember any of the numbers, but I, too, was on imbruvica for 3 years and then it stopped working. I was started on allpurinol for some time before I was switched to venetoclax (and 6 months of rituximab), and took the imbruvica up to the day before my first dose of venetoclax. This was nearly 2 years ago, and I was sicker than a dog for at least the first week of the ramp up. Wish I could share more specific info, and I know everyone's experiences can be very diverse with this disease, but other than fatigue I have felt pretty good the majority of the time.

[roszika]

I am on Veneteclax as I have stated a few times on this forum. My MRD is oooo but I do have stomach aches, myalgia symptoms and fatigue but I consider these are minor side effects compared to the good result. I do believe there has to be side effects , After all being on Veneteclax for nearly a years surely has changed my blood chemistry. On another subject let us hope the Corona virus petes out be nothing more than a mild virus similar to the common cold virus- good luck everyone.

[Doggoneit101]

I'm sorry you are having a rough time on Venteclax. Everyone responds differently to medicines. I have not had any bad blood results and I've been on Venteclax for almost 4 months. I have noticed some days I'm more tired and I get occasional heartburn. Are you taking any other meds with it to ramp up?

[Jamstev71 in reply to Doggoneit101]

Yes allopol to help keep from getting tumor lysis. The doctor let me take a temporary break from the medicine because it hit all my numbers so fast and all the counts took a sudden drop.

[Chillo in reply to Doggoneit101]

Hi! My husband was in Imbruvica for 3 weeks. Then he got allergic reaction. Today Dr recommended venetoclax. Any information what to expect is appreciated it.

Stay safe

[Jamstev71 in reply to Chillo]

They gradually increase the medicine and feel bad for about a month but I'm beginning to feel better. His blood counts will probably fall at first but mine are coming up now. Good chance of going in remission with this drug.

[Doggoneit101]

I also was given Allpurinal to ramp up. Any word on how long of a break you get before you restart. Hopefully when you restart things will go much better.

[Jamstev71]

I think one of the problems is the doctor letting me go with low hemoglobin

[17Pisme]

My question would be was Ibrutinib still working but at a less than 100% effective rate (which was my story)? If you went from partial effective with Ibrutinib and cold turkey onto Venetoclax, the ramp up period with Venetoclax didn't equal what you left with Ibrutinib which is what happened to me. Things got much better when 6 straight weeks of Retuxinmab was ordered to fill the gap. You might want to ask your Dr.

[Canuck901 in reply to 17Pisme]

How are you doing on the Venetoclax? Any update ?

[Jamstev71 in reply to Canuck901]

Doing pretty good. My blood counts are a little low but stable.

[Canuck901 in reply to Jamstev71]

That’s great news are you on reduced dose or Full dose ?

[Jamstev71 in reply to Canuck901]

Full dose. I have to take it for two years.

[writepa]

thank you. his LDH returns to normal in subsequent tests.

[Hidden in reply to writepa]

That's great!

[Canuck901]

Any update ?