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CLL Support Association
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Needing to start on meds now and can't afford the copays

Saw Oncologist yesterday. My CBC is in a very fragile state. My night sweats are bad again and I am so fatigued. He wants me to go on Ibrunitib he has suggested right from the get go but I have wanted to put off as long as possible and do the w & w. He says due to

my 2 unfavorable prognostic indicators I am risking infections and getting worse. But, I can't afford the copays for Ibrunitib. He said I can apply for all kinds of help and won't have to pay anything. But, for how long do they do this if I have to stay on this med for life I just turned 60. I am thinking about going the iv chemo route instead for 4-6 months then see what happens. ANy suggestions or opinions.

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I would strongly suggest that if possible you get a second opinion from a haematologist who deals with cancer, and preferably a cll specialist.

You don’t mention where you are from but I suspect perhaps the USA. In the USA but not in some other countries FCR is increasingly being replaced by ibrutinib. There are important genetic markers that would need to be screened for if you were going to consider FCR as it is more suitable for people with certain markers and not suitable at all for those with certain others. Have you had your FISH test done? I’ve been through FCR recently and you are welcome to read my diary and the stories of others on here who’ve taken either treatment.

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What are ur markers? I was

13q mutated. I did IV FCR and reached remission after just 3 cycles! It was uneventful experience. Just a little tired and some appetite loss. Port was helpful.

7 months remission and doing great. I did not want to take a pill every day when I had this option.

Can u get second opinion? 💕

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Yes I think I am going to. I am IgVh unmutated, Zap 70 pos and 43D pos. Which are not good prognostic indicators the report says.

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FCR is not recommended for unmutated. I would be concerned about this doctor. I think BR or RCHOP is recommended for that.

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I’m puzzled about your suggestion that RCHOP is recommended for unmutated CLL GM. To be honest, I’ve only heard of it being used primarily for Richter’s patients as it’s very heavy duty compared to BR.

Did you read this somewhere?

Regards,

Newdawn

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Just from others who posted their markers and treatments.

But most importantly FCR is not for unmutated.

Will see if I can find the other info.

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I did chemo last year. I wouldn’t do it again. I was uneducated about the treatment landscape at the time and I regret my unforced error about 2AM every night. Please at least consider what clinical trial alternatives are available.

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Hello, HopeME. May I ask why you would not repeat chemo? I've read your timelines posts and they seemed rather positive. My oncologist has wanted me to do heavy IV chemo (BR) since my diagnosis January 2017. No other options for me. My own intuition and life experience has led me to decline such treatment.

Would like to hear your experience. Also, does your moniker indicate that you are also an ME/CFS patient? I'm on that community group as well. Thank you and best wishes to you.

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Yes. I had BR chemo last May through October. I feel great and I have posted that the treatment results have been positive. However, since my disease is unmutated the BR treatment is unlikely to hold the CLL in check for long. I am relatively young and fit but my doctor elected not to outline other treatment options available.

He should have said there is so much going on in CLL treatment you need to see an expert. He didn’t do that. Instead he said if you are mutated you will do FCR and if you are unmutated you will do BR chemo. And in both cases “save” Ibrutinib for when the chemo option fails. I foolishly listened to this doctor’s advice without finding someone who would candidly explain all of the treatment options. This occurred at a major Boston hospital with an oncologist who has decades of experience.

In my humble opinion, any credible oncologist should immediately admit to his/her paitients his/her inability to provide best in class advice regarding SLL/CLL treatment because of the complexity of the disease in combination with the rapidly changing treatment landscape. A referral should be made to an SLL/CLL expert. If location does not allow for such a referral the oncologist should at least admit his/her short comings regarding the disease. My experience still greatly upsets me. Thus, my recommendation to BamaLady to get to MD Anderson where all of the current options and clinical trials can be explained to her. I hope this helps.

Best,

Mark

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Thanks so much for sharing your story, Mark. I hope you continue to feel well and find yourself surprised by a very lengthy remission. Regards from Mary

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Absolutely correct.. But the problem with the "General Oncologist", they (or in my experience) do not want to recommend you to see a specialist. And I just do not understand that. My doctor at MD Anderson is a researcher, professor and clinical doctor. This is all they do; research ways to help people like me..

It's arrogance. I switched doctors here locally due to the terrible help and assistance I was getting from my original local doctor... On the second visit to my new local doctor, he started "downing" MD Anderson and trying to "take over" my treatment from MD Anderson. Talked to me about bone marrow transfusions????

I just can't with these arrogant doctors.

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My wife had a bad flavor of CLL and had to have a stem cell transplant at MD Anderson 9 yrs ago. She saw several different local oncologists. Some were great at working with MDA, others let their egos get in the way. Our experience is that when you are in real trouble it is good to be at a place like MD Anderson. Now, I was recently diagnosed with CLL.

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Man, that is weird.. First your wife and now you.. Good luck and keep us informed as to your condition.

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Thank you for detailing your experience Mark. It educates the rest of us as to what can happen - even at the hands of a highly experienced physician in a major hospital. Wishing you all the best.

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Mark, I’m so sorry about your experience, and it happened in Boston? Wow. I’m glad you shared your experience on this thread. I almost went down the same path, and the path BamaLady seems to be considering for reasons, it seems, based on perceived ability to pay. The very best places, like MD Anderson, as you suggested, also have more ways to help people afford care, and right now, with CLL, some of the very best care, as you know, as available for free in clinical trials of novel agents. In such a trial, I just went MRD- and I’m now in what should at least be a long and durable remission.

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I’m so sorry. Was it Dana Farber because there are so many specialist ? I went for a 2 nd option because my hemotolgist wanted me to. He and my hemotologist said I needed to start imbruvica. I have been on it for almost 2 yrs. You could also go to Sloan Kettering in New York which is a major hospital serving cancer patients. I wish you well.

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Thank you I am going to Mayo clinic in May to see CLL specialist.

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if you meet certain qualifications in income and assets the manufacturer will give it to you free. Jansenn which is a johnson and Johnson company has a site which lists imbruvica

jjpaf.org/

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With Johnson & Johnson you have to have spent 4% of your yearly income on only your meds. This is a one time commitment. You also can apply to the Luekemia and lymphoma society , the PAN association for grants and no need to meet any requirements other than income which is at 500% of income level. You can apply every year.

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Johnson and Johnson has assistance but you need to have gross income under $100,000. Pan is the same way. You can check Clinicaltrials.gov (or something like that) to find trials that would possible work for you.

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What about a clinical trial at MD Anderson? I understand money is tight but can you get to Houston for a second opinion? I realize Houston and Alabama aren’t right next to one another but you can drive there. Clinical trials are funded by the drug companies. No co-pays! And arguably a much better option than chemo or Ibrutinib alone. If I were in your position I’d crawl there if I had to. I realize it is easier said then done but if you got into one of the multi combination drug trials you might be able to knock the disease into remission for a long time or who knows it possibly could lead to a cure. Please try!!!

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I'm on the ibrutinib/venetoclax trial at M D Anderson and I do get the venetoclax for free, but my insurance has to pay for the ibrutinib. The copay for the ibrutinib on a Medicare part D plan is about 10,000 a year. I'm currently getting a grant to pay the co pay, when it runs out I'll probably get on the Johnson & Johnson assistance. The specialty pharmacy that supplies the ibrutinib deals with getting these grants and so far their good at it. One good thing about being on this trial is it's only suppose to last 27 mos so even if I had to make the co pay my self it would be for a limited time. But this particular trial is closed, however there are others. Check clinicaltrials.com

john

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Thanks for the clarification John. I wonder if any folks on the current three drug trials could explain if all these drugs are totally free or if Ibrutinib always needs to be paid for by insurance. I’m confused.

Bamalady also realize that if you are able to get into a clinical trial you are more likely to achieve a longer and more durable remission which could theoretically save you thousands of dollars in the future.

Best,

Mark

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I am going to try to get into one at Mayo clinic in Jacksonville. Also have call in for 2nd opinion with a Cll specialist DrAsher Khan

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My husband’s Medicare Part D copay with Aetna is $500+ a month for Ibrutinib.

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I have Medicare BlueRX and I have a $5,100 deductible and then 5% after that.

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clinicaltrials.gov is the website to check for trials.Yes, my ibrutinib will cost me about$13,000 for the year but that's better than $13,000 a month. They tell us we make too much money but after being frugal for over 50 years, I feel like we should have slacked off a bit!!

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Your right Beargrove75 it is .gov not .com, and I agree I didn't put money in a 401k my whole career just to turn it over to a drug company, but at least since my money is in a 401k I decide how much to take out and therefore how much income I have and can keep it under the income limits.

john

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An excellent decision BamaLady. I wish you nothing but the best!

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I’m not going to judge any treatment decision. They are personal decisions, and should be between someone and their Dr.

That said, please do not make your treatment decision here based on money - yet. There are, as others have said, many ways of getting co-pay assistance.

You really should be consulting a CLL “expert” at this time. They will know all the nuances of treatments, payments, etc. It’s never too late to consult with an expert. You deserve to give yourself the best opinion available. Good luck.

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Dr. Asher Chanan-Kahn is a great choice. Dr. Ian Flynn in Jacksonville, or Danielle Brander in North Carolina would be other options. If you are interested in a trial, you could look at clinicaltrials.gov to see which ones are being offered by these doctors. On the site you can narrow your search, rather than just bringing up everything for CLL. You could also check what is at the National Health Institute in Washington, DC. They will pay for transportation and give a stipend for lodging.

If you look at trial options before seeing Dr. Chanan-Kahn, you will be in a good position to discuss the pros and cons of what you would qualify for vs getting treatment through him or someone local. I would be very surprised if any of these doctors recommended RCHOP, unless there is something about your case that we don't know about.

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Firstly, please see a specialist. Secondly, take the Ibrutinib. They do have a very generous copay assistance program. They told me it was $24,000 a year, so $2000 a month for copay assistance.

I, too, have bad genetic markers (11Q deleted and unmutated). My local doctor wanted to do FCR almost immediately. Gave me 2 years to live. So, I went to MD Anderson and the diagnosis was confirmed, however, the prognosis was different. My doctor at MD Anderson said that FCR was NOT an option for me, due to my markers. Said that I would NOT achieve remission and once I was treated, there was no going back in time and undoing the damage that can be done by incorrectly attacking/treating any form of cancer. She also told me that the biggest "plus" I had was that I had never been treated. Told me that 80% of all of their patients have been misdiagnosed and/or treated incorrectly, which leads to bad outcomes. She then told me that when my time came for treatment, I would be treated with oral therapy. Probably a combo treatment of Imbruvica (Ibrutinib) and Venetoclax.

I have been on Ibrutinib since June and my numbers are coming down. It is slow, but it is coming down.

Had I followed my local doctors advice, I would already be dead. I was diagnosed in 2014.

So again, please seek a specialist and try the ibrutinib. By the way, I am in Alabama as well.. I take it by your name (Bamalady) you are in Alabama or at least from Alabama?

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Hello BamaLady

I would also suggest a second opinion from a CLL Specialist, but do not be surprised if you get the same opinion. I am currently in bentamustine + rituximab (B+R) treatment. I am un-mutated and 13q deleted. I will be doing my 6th round of treatment in couple of weeks. I have had some side effects from the treatment, but all were manageable and relatively short lived. I went through the same process and discussed treatment options with 3 hematologist/occultists and 3 CLL specialists. I did consider Ibrutinib, cost was an issue but not a road block. I weighted the side effects of the different treatments as well as length of time I would have to continue treatment. Your general health is also a major factor and all of my doctors agreed B+R was an acceptable option. Tough decision, wish you the best.

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I have high risk CLL. Taking ibrutrinib 2 1/2 years and paid $0. The Leukemia and Lymphoma Assoc. pays what my insurance won't pay. I would be dead without ibrutrinib and God. Went from stage 1 to stage 3 in 3 weeks. Started ibrutrinib and within 2 months my blood counts were normal and remain so. I have lots of energy. No side effects except nails that break and won't grow and cute curls on my head. PLEASE. Ibrutrinib is a gift to us from those dedicated researchers and our almighty God. Enjoy life with ibrutrinib.

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Excellent post..

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I've been on Imbrutrinib for almost two years and it has saved my life. I had to get through three oncologists at other hospitals but I'm no on a program through Sloan Kettering and my doctor is a CLL specialist. It is your life so don't be afraid of hurting feelings. Find a CLL special and get on a trial. You might be 60 so you are still young enough to be around when they find a cure. "Be Here Now" Get healthy NOW and look to a healthy future.

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Please find a CLL specialist! You can even get a free online consult at the URL I provide, below. Your doc is right about programs to help you pay. Yes, you would take a pill twice a day, but for more complex CLLs, there are other alternatives, such as the clinical trial I am in that just eradicated my CLL. Trials are the best places right now for many of us to receive tomorrow’s best treatments today. cllsociety.org/cll-society-...

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Call: 877-877-3536

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Hi. I was also recently diagnosed with CLL. 17 p deletion. I was put on Ibrutinib because of fatigue and sweats and enlarged lymph nodes. My insurance had a copay but the Imbruvica also had an offer which brought my monthly copay to only $10 per month! I would strongly suggest you explore your options for getting this drug. It’s made a huge improvement in me in less than 6 weeks! Very few side effects. I feel great again! Best wishes to you and I pray you’ll find the help you need!

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I adopted a pure vegan lifestyle, budwig protocol, and bought the Square One program from Chris Beat Cancer. Truth is, this is the only thing that has dramatically changed my test numbers to the positive. My high Whites from the CLL can go down and much as 10,000 units every month. January at 82,000, February at 71,000, and last one on the 15th was at 61,000. I'm turning up the heat on healing naturally. Sick and tired of my idiot doctor who is now literally scratching his head, as other numbers such as platelets are improving as well. This evil dysfunction does not belong in my body and I've seriously gone to war.

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Hope you are having your B12 levels monitored...

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BamaLady,

Pan Foundation and LLS Foundation both have co-pay grant programs where those are covered. Please google them. CLLsociety.org arranges free second opinions to qualifying individuals. Be persistent and don’t give up!!!

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Hi There are very few of us that can actually "afford" the treatments. There are organizations who can supplement the money. Your pharmaceutical company which supplies the Imbruvica may be able to find an organization who can help you. I'm not familiar with who might be in your area. Ask various pharmacists for their guidance.

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My specialty pharmacy alerted me to grants available to cover co-pay AND they applied for one for me. I was granted far more than I needed for a year, which suggests there is ample funding out there. Of course, when I got the grant, I had no idea Imbruvica’s price would go up $600/month; perhaps the grant anticipated the jump when making the allotment.

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Yes, as another poster listed with the link, Johnson and Johnson will give it to you, the income guideline for family of 2 is 95,700 a year income and you still qualify, also healthwell foundation is one that is used a lot.

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I think that figure is family of 4

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No it’s for a family of 2 but you must also meet a 4% of your income just for your meds the good thing is this is a one time commitment.

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I have medicare part d. it's different for me. I never looked at rules for others. In fact it now says family of 2 101,000

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Yes, just called them last week. They did say $101,000 for family of 2.

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Yes I have medicare part d also, the J&J and any foundation really just pays your co pay, your insurance company still pays the full price every month, and after first month you enter catastrophic coverage.

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However i must also point out it's gross income from all sources. that includes 401 and ira payouts.

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This funder is new for CLL...

tafcares.org/news/announcem...

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