I will be going for a follow-up visit with my specialist at UPENN after new blood work to check for mutations and to discuss treatment options. My questions is: Based upon my SLL parameters what drugs other than ibrutinib may be an option?
I am a female 63, diagnosed in 2008 with SLL. I was treated twice with Benda and Rituxan 2011-2012 and 2014 -2015 - I am UNMUTATED. cd38+ 34%, cd20+ dim. NO OTHER HIGH RISK MARKERS. RItuxan did not work for me. My SLL came back during the 2 1/2 yr maintenance phase. Lymph nodes are getting larger on Pet Scan but not brighter. I am now on IVIG for frequent infections and I am starting to deal with fatigue again. I have lost 20 pounds since January. NO night sweats. I KNOW that more treatment is in my future, I just don't know which drug is best. My issues w Ibrutinib are cost especially when I go on Medicare in 2 years and more important, the fact that it can just stop working, or worse yet cause the disease to transform to something worse.
Renee
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ReneeSusan
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I think a clinical trial might be a good option, sounds like your SLL is very much lymphoma...
~chris
You are going to a great CLL research center. The cost effective approach would be to ask about drug trials for second generation BTKs. UPENN is pioneering immunotherapy -- pretty risky. The complaint at MD Anderson is that they are struggling to get enough patients for the drug trials. I would assume UPENN has the same problem. This is from UPENN's webpage:
At Penn, we aren't just thinking about what treatments are available today for people with chronic lymphocytic leukemia (CLL); we are looking ahead at what's to come in the future.
With clinical trials, novel agents, and newer and better diagnostic and genetic testing tools, we are improving treatment options for people with CLL and improving diagnostics to customize and individualize treatment plans.
The investigational therapy program in CLL includes research on targeted "chemotherapy-free" modalities that use monoclonal antibodies, monoclonal antibody combinations, radio immunotherapy, therapeutic vaccination, and trials of agents targeting intracellular pathways, as well as immunotherapy research that utilizes the body's own immune system to attack CLL.
I'm not sure what they are complaining about if indeed that they are. They can have me for a clinical trial any time that they want but they don't accept my health insurance. 🙄
Thank you for the good advice. Yes my disease presents different, not in the blood more in the lymph system and my markers and age limit treatment options. I think UPENN is my best chance of finding a treatment/clinical trial to give me quality of life if not quantity.
I wouldn't rule out Ibrutinib. Medicare covers a lot of the cost (at the moment) and there are programs to help with the co-payments. I believe you can relapse or transform from the other available treatments too.
ReneeSusan wrote: "My questions is: Based upon my SLL parameters what drugs other than ibrutinib may be an option? ...... My issues w Ibrutinib are cost especially when I go on Medicare in 2 years and more important, the fact that it can just stop working, or worse yet cause the disease to transform to something worse."
Hi ReneeSusan: I would like to answer your question and respectfully challenge the second part of your posting quoted above.
There are multiple Non Chemo drugs approved in the USA now, in addition to Rituxan and Ibrutinib - They include: Idelalisib/Zydelig; Obinutuzumab/Gazyva; Venetoclax/Venclexta. (I've been treated 4 times and taken all of them except Gazyva). I am having the best results with Venetoclax (MRD neg in 6 months) and will be stopping treatment later this year. I had the poorest results with Ibrutinib, but many people get excellent results from it, and the best data seems to be coming from Ibrutinib plus Venetoclax.
Also I disagree with your assertion that Ibrutinib can cause the disease to transform into something else. CLL can transform into more serious problems like Richters, MDS etc. regardless of which treatment you use, and some data indicates that Chemo treatments are more likely to damage the bone marrow and cause those transformations.
Now to the cost issue: All of the non-Chemo options are about as expensive as Ibrutinib over multiple years, and the Chemo treatments are less expensive per dose and due to shorter treatment duration. Both of us are UnMutated and have CLL that returned quickly after treatments, so finding a treatment that gives longer remission without damaging bone marrow would be the best long term survival strategy. Ibrutinib is known to be very effective for reducing Lymph nodes, so you may want to reconsider your bias against it.
For the cost issue on the newer drugs like Ibrutnib, Idelalisib and Venetoclax, there are programs to cover the copay amounts for people on Medicare Part D that earn under ~ $90k per year. When you want more info- please search the archives for the many postings that discuss where and how to find that copay assistance, or send me a private message and I will share some of my previous postings.
So I would encourage you to go to your appointment with your CLL expert at UPenn, but keep an open mind. Ibrutinib is a viable option, or any of the clinical trials for the next generation of BTK inhibitors thought to be improvements over Ibrutinib (ACP-196- Acalabrutinib, and several others). If you can get on a clinical trial for Ibrutinib plus Venetoclax, that would be my best suggestion.
Thank you for taking the time to reply with great information. I understand non-chemo drugs are the way to go as the chemo really won't be a benefit. I will earn less than 90K on Medicare when I retire, and I looked online for info on payment assistance but could not find anything. In fact I found just the opposite. I found sources that said that Medicare does not allow 3rd party payment assistance. There are some grants available but they pay for one payment and that's if the grant hasn't run out by the time it's your turn. Can you tell me if the assistance is available in NJ? Is it a state thing?
I am grateful to how found the program at UPENN and hoping they may have some answers as well. I will keep an open mind about IB, but what scares me is the fact that if you have to discontinue the drug for side effects/cost the disease can come back more aggressive. This may sound fatalistic but I don't want to leave my disable husband penniless if the drug stops working after I spend thousands of dollars only to face the inevitable. It is something I have been grappling with since December when my doctor told me I'd be looking at treatment within the year. I realize it's all part of the CLL journey. Just want to make the best decision possible.
You are correct, US federal law and Medicare have restrictions that prevent pharmaceutical companies from assisting with drug co-pays. It is NOT a NJ state issue. BUT there are non profits - that can get around the federal restrictions - see:
I got coverage from PAN (the Patient Access Network) that covered all co-pays for Ibrutinib beyond my Part D premium of $34 per month.
When I started Venetoclax the PAN had a funding shortage, so when they turned me down, my CLL expert doctor put me into a program from Genentech that provides the drug at no cost. ( a way to finesse the federal law language since it is not copay assistance).
UPenn should have some experience with getting copay assistance, but if not, I would recommend a 2nd opinion trip to Weill Cornell NY Presbyterian.
Thanks for the info. Would you believe in my area if you are on Medicare with a PartD plan the cost is $700 a month copay after I pay the first $4600! Wonder why so much in Ocean County NJ. I consulted a social worker who helps those on Medicare find the best part D plan and she told me it was not uncommon in our area to have to shell out so money for cancer drugs. I will check out the link and also discuss all with UPENN. I feel more hopeful now.
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