Ibrutinib dosages: Having had CLL for some... - CLL Support

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Ibrutinib dosages

plett1234 profile image
3 Replies

Having had CLL for some 7 years and 3 bouts of chemo my marrow is again infiltrated and needs treatment. My oncologist has said he is reluctant to give more chemo and has recommended Ibrutinib which has recently been launched in South Africa. It is hugely expensive and my Medical Aid has declined to support this payment. I therefore need to calculate my own finances for this product and need to know whether this product is to be taken in perpetuity or is it for a fixed period of time or in spells? I am 74 years old and in good health (relatively speaking) and physically active.

Plett1234

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Jm954 profile image
Jm954Administrator

Hi there,

Usually Ibrutinib is taken until it stop working or the person becomes intolerant due to side effects. It can obviously be a treatment that can last many years and some of the original patients are now 9+ years into taking Ibruinib. Side effects can be very variable but possible skin problems is one of them (ref one of your previous posts), in addition to the more serious possible AF and high blood pressure.

Are there any clinical trials near you that you could qualify for? You might get free treatment and perhaps Venetoclax which is a time limited treatment. There may even be one of the new BTK inhibitors such as Acalabrutinib.

I had a look but could not get access to all the websites. Here's a couple to look at:

centerwatch.com/clinical-tr...

sanctr.gov.za/

Let us know what you do

Jackie

cajunjeff profile image
cajunjeff

The current model is that ibrutinib will be taken until it stops working. My personal opinion is that there is a good chance in the next few years an approval will be given to add venetoclax, or some other drug, to ibrutinib to induce a deep enough remission to suspend meds.

Jackie's suggestion that you explore clinical trials that might include ibrutinib, venetoclax, acalabrutinib and obinutuzumab, singularly or in various combinations, is excellent advice. You should explore if there are any trials near you for which you might qualify.

Taking ibrutinib by itself is a good choice for sure, but the financial cost can be a burden. There are some foundations that can provide financial assistance if you qualify.

Chillo profile image
Chillo

Sorry to hear that. I know how difficult to get a release from insurance co. We deal with that thanks God today we receive a call saying the Insurance approved it with manageable copay.

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