Hello, my husband has CLL with a p53 and 17 deletion. He has a failed FCR. Our Doctor has ordered Ibrutinib for him to begin 2 tabs daily this week. Does insurance and Medicare recognize this as chemo? Is it covered?
If you've taken Ibrutinib, we would appreciate hearing from you.
Sincerely,
farrpottery
Hi, I'm hoping your husband is being seen by a CLL specialist. If not, I would advise a second opinion with one. I have been on full dose, 3 capsules daily since January with no problems. I take the capsules at 8pm nightly with plenty of water and on an empty stomach. Did your specialist give his reasons for the lower dosage? A partial payment from Medicare insurance and help from the PAN Foundation has made Ibrutinib affordable. Your doctor's office should be able to direct you with help to afford the drug. My doctor put me in touch with a specialty pharmacy that is excellent. Good luck. Sally (USA)
Thank you so much for the information.
My husband had such a rough time on the FCR that he's still got low numbers and had infections the last 4 months. He also has a secondary diagnosis of histoplasmosis and p53 & p17 deletion. He's already beyond the 2&1/2 years they gave him in March of 2013. I believe our Dr is erring on the side of caution.
He's had 4 other patients that began at higher dose of 4 tabs daily and they did not respond well.
Yes our Doctor is a CLL specialist also a blood disease specialist. We trust him completely.
I'm so grateful to hear the success stories on here. It has encouraged us.
Thank you for telling us about the Pan foundation. I'm going to try and find out more about what that is and call tomorrow.
Thank you again for you help and encouragement.
Sincerely,
farrpottery
Here is the information on the PAN Foundation. panfoundation.org/index.php...
You might read ahead on Ibrutinib so you can ask your doctor any pertinent information before your husband starts the medication. It's very informative. imbruvica.com/cll/dosing-an....
Keep us updated on your husband's progress. Kind regards, Sally (USA)
Were those 4 patients who started on a dose of 4 pills CLL patients? The normal dose for CLL is three pills taken together.
LLS.org also has some financial assistance for CLL patients. As CLLCalifornia said, your doctor's office should be able to help find assistance paying for the Imbruvica.
Yes they were CLL patients with two failed previous chemo attempts. I do not know what deletions they had. Their side effects were extreme diahrea to kidney failure.
I don't understand why the doctor would start CLL patients on a higher dose than that approved by the FDA. I have read about many cases where the normal dose - three tablets a day - was adjusted down temporarily, and in some cases still ongoing, because of side effects, but I would discuss your doctor's rational for not following FDA guidelines. He may have done research outside of what I have seen reported.
I would imagine each individual case has specific that help the doctor make a final decision. For example, my husband has a secondary diagnosis of histoplasmosi. The medication is Sporonox. Sporonox can enhance the other medications a patios on thereby actually doubling the effects of , for example- a HBP medication. All of these things are taken into consideration on each individual basis.
My medicare advantage plan does cover Ibrutinib. I have a hefty co-pay, but I'm thrilled that I am able to cover it. There are also other avenues if you can't do the co-pay.
Virginia
I am not sure on the insurance side. I am on a clinical Trial with Imbruvica and Venetoclax.
Venetoclax I have found as stronger than Imbruvica and he maybe able to get off over time.
Clinical trials might be an option if you are near a center.
A Imbruvica Venetoclax trail is suppose to be starting later in the year at various sites for refractory patients.
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