CLL Support Association
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I have 1 year relapsed cll/sll. Will need another 6 months of rituxan/chemo. I will also be prescribed ibrutinib. I was told I will need to take it for the rest of my life. Which I guess I do not have a problem with it, if it truly works. However, my first concern is I am sensitive to medicines as it was tough going the first round of treatment. Do not know if I will be able to take it. My second concern is the cost. I looked up prices and there is no way I will be able to afford ibrutinib. I can not put my family in the poor house. Do not know if my current insurance will be, if they do although it looks like they limit the prescription to 2 a day instead of the 3 my oncologist prescribed, after out of pocket. Although I can not afford the out of pocket either. I am more concerned for next year when I will have Medicare. I know I will never be able to afford it once on Medicare. I was just wondering, should I even begin to take it because I know I will have to stop in the future? Does this medicine accelerate the disease once stopped? Will I be able to stop taking it after taking it about a year without developing immediate relapse?

Thank you

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Are you seeing a CLL specialist? I would think that if you have failed a chemo therapy that other non-chemo avenues would be explored. Ibrutinib mono therapy or maybe a combo treatment.

If you stop taking the new novel agents, disease progression will occur. There are combination studies/clinical trials now putting two or three drugs together to attempt to get more patients to MRD negativity. (where there is no sign of the disease) and hoping for a treatment-free period after a set duration of therapy.

These are good questions to ask your doctor....if your doctor is not a CLL specialist, you should definitely find one. Treatments are much better now and when talking about treatment, specialists are always looking to put the best foot forward and look at individualized treatments and not rely so much on "standard treatments". There is definitely a move away from chemo-based treatments coming.

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I think it is more accurate to state that If you stop taking the new novel agents, disease progression is more likely occur if you haven't been on them for a few years and/or haven't reached MRD negative status...

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What does MRD negative mean? Is it just a regular blood work showing white and red blood cells or is it a specific test? I will try to stay on ibrutinib if I can tolerate it, Just with medicare, it may be a problem. At least for this year, my insurance is paying for it. Thank you for responding.

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Minimal Residual Disease (MRD) is a special test on blood or bone marrow to assess how many CLL cells remain after treatment: en.wikipedia.org/wiki/Minim...

To be MRD negative means that no CLL cells are detected in the sample and correlates with a long remission time.

Neil

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Thanks for your quick response and info.

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Not sure if my oncologist is a CLL specialist, but he does seem to be a good doctor even though he does seem to be "standard treatments" focused, unfortunately. Thank you for the info and replying. I do appreciate it.

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If he was, you’d most likely know. Oncologists see different kinds of cancers (CLL included). Specialists only see CLL patients. They generally have much more knowledge on the disease and treatments. Many times will have access to clinical trials that regular oncologists don’t. Clinical trials can give you access to newer, exciting and more effective drugs coming out and be easier on your pocket book! 👛 💰 you don’t have to give up your oncologist...they can work together. It just gives you better care and opens up more treatment options based on the latest research.

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Thank you

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Many people do not need the Imbruvica more than a year; I am on Medicare this year with a Medi-gap policy. The Humana pharmacy found me a foundation to pay the first $5,000 co-pay for year one for the drug, and they may do year 2 as well - if I still need it.. After I hit the annual catastrophic outlay on prescriptions ($6,000) on my policy, I must pay 5.5% of the monthly cost or $550 a month. Total out-of-pocket in year one is then $6,500. My total monthly income is now $3,250, so I will cut here and there and make it. There are resources, and think of a Go Fund Me page to raise your co-pay. People will help; many want to if they hear the right story.

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Thank you for info and reply. I found out my insurance will cover the medicine this year, but as I suspected it will be a problem on Medicare. Thanks again.

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Many people do not need the Imbruvica more than a year

There might be some but...

Generally patients remain on ibrutinib until the side effects aren't managable, or the drug fails.

Follow the links below and apply when you need to, or talk to your CLL doctor and they can make application for you to various programmes.

There is financial relief and copay relief through Janssen, PAN and LLS

imbruvica.com/patient-suppo...

PAN

panfoundation.org/index.php...

LLS

lls.org/support/financial-s...

~chris

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Thanks for the info and links. Very much appreciated.

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Joan,good new ( I think) it appears that you are on a limited income and if that's the case, you may be in luck.Johnson and Johnson, maker of Imbruvica, has a program for low income folks ( like me)that provides assistance for the difference between what your insurance pays and the actual cost ( sometimes the entire difference!). This happens once you have spent $2,800 for the year( in most cases, the first month). I am on Medicare so I know this background. Also, whoever the pharmacy is that distributes your Imbruvica ( In my case it's Biologics), has payment assistance programs available as well.The # for Johnson and Johnson Patient Assistance is; 1800-526-5168

Hope this helps

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Thank you for replying and for the info. Very much appreciated.

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Your doctor's office should set this up for you, but sometimes we have to fight our own battles.

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Thank you, my doctor did set up with my insurance, and the onsite specialty hospital pharmacy set up a discount card for the copay. I just hope this will be the case when I have Medicare next year. Thank you for replying. Very much appreciated.

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Medicare sometimes works differently and things depend on your secondary and part D. Start asking questions now so you aren't scrambling at the last minute.

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Yes, that is why I am worried. I definitely need to research for when I get on Medicare next year. Of course it all hinges on if I do not have any major side effects with ibrutinib. I am grateful for all the info replied posts and links. Thank you.

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On researching, saw where Austrailia is subsidizing ibrutinib and patients will only have to pay about $40 monthly. Most of those with CLL are over 60 with limited income. There are some options for Americans where they may get help. The outrageously prices of these "life saving drugs" are out of control. The drug companies should be ashamed. I research a little and I know I will not afford ibrutinib on Medicare. I am just wondering if this "miracle" is not just hyped up. Now it is you got to take it if you want to live.

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