Extreme tiredness first few weeks on... - CLL Support Assoc...

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Extreme tiredness first few weeks on venetoclax

I am finishing my 3rd week on venetoclax. My numbers yesterday are good: ALC 3600; platelets 149000; hemoglobin 11.4 (it was 10 before treatment). I feel okay much of the time. However, I have bouts of extreme tiredness where all I can do is lie down. Usually they come in late afternoon.

Has anyone else experienced something like this?

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If your afternoon fatigue is new since starting Venetoclax, you may want to try taking your Venetoclax with your evening meal once your ramp up is completed. Since you need labs at 6-8 hours and at 24 hours after each dosage increase, this wouldn’t be practical until after your ramp up is completed. You would also have to gradually move the time you take your Venetoclax back over a few days since you don’t want more than an 8 hour delay in taking your Venetoclax. I’m sure you have already discussed the problem with your doctor to make sure there is no other reason for your fatigue. This is a possible side effect of Venetoclax, although i have had no side effects at all with Venetoclax.

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I am so envious that youhad no side effects on Ven. I still have fatigue though I am off Ven now fir 5 months. Had lots of Gastro issues. My dose was tapered down to 100mgs daily until it was discontinued Oct 2018 after 14 months. In remission but I still don’t feel well. Disappointed.

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I’m not getting Venetoclax, but I did have late afternoon crashes a while back. It turned out that my Vitamin B12 was low. Adjusting my supplement dose made a big difference. It would be worth having your B12 and D levels checked, and working with your doctor to find the right dose for you if they are low. Don’t go by what anyone else takes. Needs are very different.

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Hi there,

I suffered with fatigue during ramp up and for a few weeks after but put it down to my body dealing with the rapid drop in cell count, nights in hospital and all the travelling backwards and forwards to hospital for checks. Energy levels fine again within a couple of months. Hope you start to improve before to long and Venetoclax works well for you

Maureen UK

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When did you quit taking allopurinol? I think it might be causing some of my problems. My ALC is 2.79 and am still on it.

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After 4 weeks on venetoclex, my ALC is less than 2000, which in itself is good. However, hemoglobin and platelets are worse than they were 2 1/2 weeks ago (although better than when I started). Did you experience this also?

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Really sorry can't remember when I stopped allopurinol.

Maureen

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Do you recall if you lost weight?

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Yes I lost a lot of weight but it was down to diarrhoea. I changed the time I took my Venetaclax from after breakfast to after my evening meal which helped with both the nausea and diarrhoea.

How are you getting on?

Maureen

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After 4 weeks on venetoclex and 1 400 mg dosage, my ALC is less than 2000, which in itself is good. However, hemoglobin and platelets are worse than they were 2 1/2 weeks ago (although better than when I started)

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Did you experience anything like this? If so when do they get better?

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Yes, during the first six weeks. I required hospital admission and had both red cells and platelets transfusion, plus steroids. Venetoclax also paused due to neutropenic sepsis. However by eight weeks in everything was okay and I was feeling fine.

Platelets took a dive again last June, almost ten months after commencement of Venetoclax: a transfusion and steroids again got me up to speed again. I did not feel poorly at all at this point.

Discussed my platelet issue with my consultant recently as they nose dived again in February; no one reason for cause but damage to bone marrow may have been caused by earlier chemotherapy treatments that I've had as well as approx 20% of people on Venetoclax having platelet issues.

All in all despite some issues requiring hospital admissions I am grateful to be on Venetoclax and the majority of time I am well and lead a normal life. I really hope you are on your way to feeling much better and to enjoying life once more.

Maureen UK

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Thanks for the info. Do you know your hemoglobin level after 8 weeks and now?

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At eight weeks haemoglobin was 96 and last blood check on 8th March this year it was 140

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Do you mean 9.6 and 14.0?

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I realize you must not be in the US. Your units are g/L rather than g/dL. Right?

I am impressed by 140 g/L. I hate to keep questioning you, but do you recall how soon after starting treatment it hit 120 g/L? Mine was temporarily that high and I felt okay at that level.

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Hi Profrich,

I live in the UK hence the different way of quoting numbers. I am not at home at the moment and would need to check my paperwork to answer your question. I'll get back to you within the next couple of days. Take care.

Maureen UK

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