Rasburicase/Allopurinol

Hi,

I am in the first week of ramp up of Venetoclax. I was hospitalized for 2 days for the first dose. I had Rasburicase IV, but I am not sure if I should be taking Allopurinol daily at home. I should have asked, too stressed. I am at high risk of TLS, but very little effect on large node yet.

Thanks

[RitaBa]

Hi Harebrain,

I too am just starting on Venetoclax today & will be kept in hospital overnight . Did you have any side effects?

I started on 20 mg a day from today for 7 days (except the problem is it is Bank Holiday next Monday and it’s caused a problem as I was being given 7 days supply & asked to return on Tuesday next week. This would have resulted in a break of one day in my Venetoclax after only a week. They have been sorting it out for over 2 hours now . Must be a complex issue

I have to take the Allupurinol but was not offered the Rasburicase IV..

Maybe you could ring and speak to the pharmacist or your doctor and ask them to clarify that for you ?

Best regards,

Rita

[Hidden in reply to RitaBa]

Hi Rita,

No, I had no issues. I was closely monitored. I started on Friday morning and was discharged on Saturday. I feel tired and woozy. Not much of an effect on my bloods, slight drop in lymphs, neuts and hgb at last count, Saturday morning.

I missed my Saturday dose due to a misunderstanding, not mine. Doesn’t seem to be a problem.

I’m a little disappointed that my very large neck node has not responded. Early days, I suppose.

Best of luck.

Mary

[RitaBa in reply to Hidden]

Hi again Mary,

You have only just started (as have I ) & we are expecting miracles like with the Obinutuzumab (giggling

I am also feeling tired after the Venetoclax but hoping it’s mowing away all the cancer .

Let us know when you are declared in remission with uMRD.

All the best,

Rita

[cajunjeff]

HareBrain, good luck with your treatment plan. I think your doctor will probably want to maintain you on allopurinol, but since we are all so different I would not rely on the advice of anyone on here as to prescription meds. I stayed on alopurinol when I started ibrutinib until my uric acid labs became normal, but that doesn't mean you should be on it or not be on it.

Your should call your doctor or his/her office. This should be an easy question for your doctor or his staff to answer for you and a perfectly appropriate question for you to ask them.

I have a patient portal where I can go online and and submit questions to my doctors, this sort of portal is becoming more and more common. If you do not have access online to your doctor or his staff, why not just call them? No one here knows your medical history well enough to advise on meds and even if we knew your medical history, its probably still a question for your doctor.

If you were on allopurinol at the time you started venetoclax and no one told you to get off of it, its likely you should stay on it as our doctors are supposed to tell us if we need to alter our meds. It is still a best practice to ask though, and to not assume, and not to be shy about asking. We are our own best advocates.

[Hidden in reply to cajunjeff]

Thanks Jeff. Not that easy to contact him, but I will try.

[SofiaDeo]

According to the manufacturer protocol, you start the allopurinol ahead of time to protect organs from high uric acid levels. You don't stop it until instructed to by your docs. Since you were hospitalized you are likely High Risk for TLS, and need to be on the meds until your tumor load drops significantly. As cajunjeff said, it's highly likely you need to be on it until told by docs to stop. Personally, if it were me, if I weren't having bad side effects from a drug, I always play it safe and stay on a med until verifying from my doc I should have stopped it. And considering your uric acid was so high you needed rasburicase, it seems you need the protection. At least, I assume you had high uric acid and the rasburicase wasn't preventative.

[DanBro1]

For my CLL treatment I began my second week of Venclexta 50 mg tabs yesterday (Monday March 29, 2021) Last week, my first week on Venclexta was 20 mg strength. Next week, I jump to Venclexta 100 mg strength. However, before starting the drug Venclexta, I began 3 weeks of infusion therapy of Obinutuzumab (Gazyva) 1000 ml. My first two days after my first infusion were terrible. No nausea; I just felt awful with extreme fatigue - really hit the wall. On day three I felt GREAT! Like magic potion GREAT. I saw my oncologist yesterday and my lab work results are excellent. Things that should be down are down and things that should be up or normal are that way, too. I will now do a monthly Gazyva infusion while also taking a daily Venclexta tab - eventually ramping up to 400 mg. My lymph nodes are enlarged, as well. Potential for TLS is there.... but these docs know their business and I trust them implicitly. Good luck to you from Texas on your CLL journey. Our prognosis is bright, for sure!

[Hidden]

That’s very encouraging Dan. I go in again for 2 nights tomorrow 1st April, ramp up to 50mg. I don’t start Rituxan until some future date. No change yet on the lump!