What to do

[Gogldn]

How do I know if my husbands sx are from the VENETOCLAX or the CLL. He is ext. fatigued, no interest. No appetite. He has been on the med for 3 wks. Prior to starting the med he manifested the same sx only slightly less. He is going down hill before my eyes. Please do any of you know if this is normal with the med? Will he respond finally to the medt

[winterwild]

Has your husband seen his Doctor through ramp up and had regular blood tests? Prednisilone has helped me at times. If he is very unwell have you thought about taking him to hospital?

[AussieNeil Partner Administrator]

While Venetoclax works quickly on CLL, it can also temporarily reduce other blood counts, potentially increasing his risk of infection. More importantly in your husband's case, he may have developed anaemia, causing his fatigue and lack of interest. When did he last have a blood test and what were the results?

Neil

[Gogldn in reply to AussieNeil]

He was n the hospital 2 times. The first was to start V and the second was when it was ramped to 50;mg. He gets regular blood draws and the results are ok.. WBC gong down RBC going up. he is not anemic,. HGB a little low but not dangerously. Vit B 12. Level good. All others not alarming. I’ve been reading that Adderall or Ritalin may help. I know there are concerns abt the meds. But he is 79 and if he feels better when taking them then if they don’t hurt physically I don’t think we should worry. Anyone out there have any input on this?

Thank you for your replies!!

[Gogldn in reply to Gogldn]

Oops not sure I am doing this right I wrote the above post. I am Jackie not Gogldon

[sllincolorado in reply to Gogldn]

From personal experience adderall/ritalin will give you energy but can also make you very aggitated/angry. I would suggest talking to doc and if they agree to something for an energy boost maybe vyvanse or one of the newer drugs with few side effects. There is a significant cost trade off so you might need to take that into consideration. I decided to just ramp up caffeine when I am really tired.

[Gogldn in reply to Gogldn]

Well my husband is back in the hospital. Apparently his labs show he has tumor lysis. Anyone had this? I know it is very serious. And I am very worried. They’ve started him on rasburicase. Does this mean he cannot take the VENETOCLAX anymore?if so what now?

[PaulaS Volunteer in reply to Gogldn]

Hi Jackie,

Sorry to hear about your husband’s problems with tumor lysis. Yes it is very serious, but the main thing is that it’s been recognised and he’s being closely monitored and treated in hospital. Rasburicase is a recognised treatment for tumour lysis as it helps to get rid of too much uric acid in the blood.

Tumour lysis can be a problem when people first start on Venetoclax, but that does not mean they cannot continue with Venetoclax once the tumour lysis is dealt with. I'm not an expert but I'm pretty sure your husband will be able to continue the Venetoclax later.

Wishing all the best to you and your hubby,

Paula

[winterwild in reply to Gogldn]

I am so glad they have found out what is wrong with your husband Jackie, he has been on my mind these last few days. I know how easy it is to sit at home and think that you will come good, because when your body is not functioning properly the brain is not working as it should and it can become so overwhelming hard to just get in the car and go to hospital. Many times I have been urged to go to hospital by my family and have almost left it too late. Good on you for getting on line and being persistant. Hopefully he will recover and be able to go back on Venetoclax, possibly on a reduced dose.

Wishing you well.