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CLL Support Association
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beginning with Ibrutinib

Next week i will begin with Ibrutinib , as told i am igvh and p53 mutated .RC , platelels are good . Inmunoglobulins down the normal , but no infections. Some large Lynph nodes in my abdomen that may risk organs and higher creatinine and uric acid than normal are the reason to begin treatment. Any advice on is welcomed.

Thanks you all !!

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Hello 👋 advice is take the capsules every day at same time with a tall glass of water. Never eat grapefruit , pomegranate and Seville oranges. It’s a miracle drug. Been on it 33 months.

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Did you receive Allopurinol or any other medications?

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I think the decision to prescribe Allopurinol (or other related medication such as Raspburicase) is influenced by the degree of tumour burden present prior to treatment, although most seem to be prescribed Allopurinol for the first 30 days of treatment. Single molecular treatments such as Ibrutinib tend to cause a very rapid die off of B-cells so the higher the tumour burden the greater are the risks of tumour lysis. Bear in mind tumour burden is not the same as high WBC, and is indicated by the presence of enlarged lymph nodes and organs. Sometimes a doseage ramp up is used in conjunction with Allopurinol and in some very high risk patients Raspburicase is used in the first 5-7 days (as in my case). Important to keep very well hydrated in the early stages to help your kidneys flush out the debris resulting from the Ibrutinib doing its thing. You will see a rise in WBC initially as the B-cells move out of the lymph nodes and spleen into the bloodstream and as this happens the lymph nodes will start to reduce in size. This process can be remarkably rapid and many see their lymph nodes start to reduce in a matter of days and disappear in a matter of a few weeks. Good luck with the treatment.

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I only took allopurinol first month I did FCR Sorry for my late response

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Agree completely with Lola... although I've never been told to avoid Pomegranates. You'll also want to ramp up water consumption to at least 3 quarts daily. I try to drink a quart with my morning doseage, another at noon and another late afternoon. Side effects are across the board for all of us...I've experienced almost none but others have many.

Best of luck to you

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Best of luck. I’ve been on it since January 2017 and it has given me my life back. I’m active and feel great. I set my phone alarm and take it at 7 each evening. Throughout the day I drink plenty of fluids. Have t had any problems. Sally

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My advice is to monitor closely for side effects. I was doing great on ibrutinib for six months when I was suddenly slammed with serious afib and hospitalized for four days. The problem is the usual responses to afib are contraindicated with ibrutinib so they had to find alternatives while I went "code blue" three times. I'm now on a reduced dose of ibrutinib while they figure out how to move forward.

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My husband is p53 and 17 deletions...after failed fcr began Ibrutinib in September of ‘17 and he’s doing great. It’s taken down the fist sized lymph node behind his heart pressing on his trachea and bronchial area...and reduced his CLL symptoms

Blessed and grateful

Farrpottery

Don’t be afraid.

Blessings for you lie ahead.

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I'm starting Ibrutinib Wednesday! The pharmacist recommended I take it at night so that if it causes fatigue it will be while I'm sleeping. zzzzz

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No idea why I chose 3 pm to start taking this pill. Wonder if I can take it at night now. Almost 3 years am on it

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I am also p53 and 17 deletions ! Lucky me.

I think all Consultants have different regimes. I started Allopurinol one week before Ibrutinib for one month and was also given Loperamide for diarrhoea ! But have only taken 4 in 7 months.

I personally prefer to take mine 30 mins before I get up in the morning. Pills and water by bedside table and alarm set to make sure I don’t forget !

Good luck.

Colette x

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Good luck I have been on 9 months and doing well.

Ann

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Well finally i was at the dr today . BeginniNg ibutrinib tomorrow , today Allopurinol and acicovir as profliaxis ....Hope everything will go smooth ...thanks to all of you for your support !!!!

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