My Father was just diagnosed with stage 2 unmutated CLL. He has enlarged nodes on his neck, his spleen is enlarged, and his WBC has gone from 42,000 to 72,000 in less than a month and 91% are lymphocytes so they are rushing to start Ibrutinib. He asked his Dr. about protecting his kidneys and about TLS and at first the Dr. said there is nothing to take, but later after the APRN asked the Dr about it, the Dr said he would prescribe Allopurinol with the Ibrutinib. My main questions for you are:
1) Has anyone used Allopurinol from the start of Ibrutinib?
2) Does anyone notice any red flags here? I am very nervous that he has not seen a CLL specialist but I cannot force him : (
Thank you SO much for your help and community.
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CLLdaughters
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Absolute lymphocyte count [ALC] can rise subsrantually on Imbruvica (ibrutinib) as the nodes clear. I didn't have allopurinol on Imbruvica (ibrutinib), but recently had it on Zydelig (idelalisib).
The drug label states..
5.7 Tumor Lysis Syndrome
Tumor lysis syndrome has been infrequently reported with IMBRUVICA therapy. Assess the baseline risk (e.g., high tumor burden) and take appropriate precautions. Monitor patients closely and treat as appropriate.
Hi CLLdaughters, I started with high ALC at 220, and took allopurinol for 2 weeks before ibrutinib and 3 weeks after without any issues from it at all. Also was given Rasburicase via with hydration IV on first 2 days to eliminate existing uric acid as allopurinol only prevents formation of new uric acid. No TLS, so they worked well!
Hiya, my count was more than 300 and I started allopurinol on the same day as the Ibrutinib. I was advised to drink at least 2L of water a day and I had no effects.
I took Allopurinol for over 20 years because of high Uric Acid. It is harmless. Let your father take it until his WBC will go down to normal. Then it will be unnecessary to take it anymore unless his Uric Acid is high.
Good luck to your dad. My husband was also prescribed allopurinol when he began his ibrutinib treatment as part of the Ib+Ven trial at Anderson. His creatinine level at start was in range but on the higher end and his WBC count was 185k, I think. Only 3 weeks in, but he's managing the Ibrutinib treatment well. Creatinine level is good and his WBC count, after rising in the first week, dropped below 50,000 in week 2. Spleen is back to normal size. He's feeling good. Doctor also prescribed acyclovir as a preventative and we've added biotin in the hope to protect his nails over time.
Think it’s kinda standard to prescribe Allupurinol with Ibrutinib - I took it for 7 months and now I’m just on Ibrutinib. Drink lots of water - 1 to 2 liters a day. Didn’t have any issues on Allupurinol - did have joint pain and cramping and some skin issues with Ibrutinib but they have all resolved. Waiting for the brittle nails to improve but this is a small price. All best!
As most of the other 7 replies have indicated, using Allopurinol with CLL treatments is very common SOP (Standard Operating Procedure) - I have had it with 3 of 4 of my treatments. Generally it has minimal side effects, but can help prevent problems with the kidneys and reduce risks from TLS (Tumor Lysis Syndrome), so very positive benefits and low risk. Some doctors will start the Allopurinol a few days before the CLL treatment to reduce the Uric Acid levels first.
You are doing a great job as an advocate! Continue asking questions and being involved interacting with the doctors. If your father won't agree to see a CLL specialist, you can keep his current doctors on their toes. If they can't answer questions like you have asked already, encourage them to consult with more experienced doctors to make certain they are following up to date procedures.
Ibrutinib has been approved since 2013, community docs have been using it effectively and most side effects are reversible when the drug is paused or stopped, so risks are low.
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