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I have not received chemotherapy for my stage 3 CLL and do not intend to do so. I am prescribed Ibrutinib at great cost to me. In order to defray the annual cost ($140k). I take 280mg daily not the prescribed 420mg daily. What short or, long term affect will this have on my condition going forward?
It is important to remember that agents, such as ibrutinib, likely work via an “all or nothing” phenomenon. This is based upon the children with X-linked agammaglobulinemia having a deficiency of BTK activity of greater than 85%. People with less loss of activity appear to have no immune abnormalities. Therefore, the benefit of ibrutinib is really often going to be seen as an all or nothing phenomenon. If you are taking a sub-therapeutic dose, you are likely going to gain little benefit and possibly end up with the development of resistance.
There are many programs in place to help cover the costs. It is important to make sure all options have been exhausted.
I would like to know more about how Idelalisib and Rituximab work in combination and whether there is any evidence of a ‘ synergistic’ effect between them as has been suggested. The optimal dosage of Idelalisib is well established but what do we know about the frequency, number and dosage of Rituximab for maximum effectiveness.
There is no optimal dose of rituximab. The dose rituximab was first studied was selected based upon drug availability. There was never a form phase I, dose finding study done. There have been some studies performed using higher doses of rituximab in CLL and have shown improved response rates. What is not known is whether this translates into an improvement in an important end point.
If I have various blood tests about every few months without significant change in results and don’t experience any new symptoms, is it really necessary for me to have an examination by my oncologist? Invariably I will be asked to return again in another few months.
It is important for patients to follow up with their oncologist in order to signs and symptoms of disease progression to not be missed. Some issues the patients may not consider relevant to CLL may actually be related. For patients who have disease that is stable, visits can often be every three to six months. For those whose disease is approaching needing treatment, the visits should be more frequent.
Would treatment with ibrutinib be ruled out for a CLL patient diagnosed with mild hemophilia B?
There is no reason to necessarily exclude treatment with ibrutinib in a patient who has a bleeding diathesis. Especially with a condition that might only slightly increase the risk, such as mild hemophilia B. Every therapy is associated with risks and the risk:benefit analysis needs to be done by the physician and patient.
I was diagnosed with CLL in 1993 at age 43yrs. I have taken probably every treatment available short of surgery. I have been taking Imbruvica for 12 months now. In the last 3 weeks I have developed a very uncomfortable total body rash. Is it possible to develop an allergy over this period of time? Thanks for any help.
It is possible for a rash to develop at any time, but if the rash is related to ibrutinib, it usually starts much earlier in the treatment course. As such, it is important to make sure something else is not occurring.
I have been taking Ibrutinib for one month and now I need to take steroid injections for sinus infecrions. Is it safe to take the injections?
Taking steroids while on ibrutinib is not an issue. The one issue would be if you are taking injections into an area where bleeding might be a risk factor while on ibrutinib, such as the spine.
Richard Furman, MD is Director of the CLL Research Center at Weill Cornell Medical College and a member of the Lymphoma/Myeloma Service in the Division of Hematology/Oncology. He is a member of the Medical Advisory Board for the CLL Society.
Originally published in The CLL Tribune Q1 2016.