I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications approved.
Conventional pre novel drug era drugs are mostly resistant.
i have been on Imbruvica for 3 months and have had dramatic improvement. I also realize that with my markers there is no expectation of a long term on imbruvica.
I am considering asking my doctor to add a drug to my imbruvica.
the more knowledgable of you might have opinion.
If you have a choice of what to add, I would go with venetoclax. I am hoping to find a way to add it to the ibrutinib I am taking.
They are both good choices, indeed adding both wouldn't be a bad idea either.
There are a lot of ongoing clinical trials involving ibrutinib/venetoclax/gazyva in various combinations and from all I have read, most of the early results from these trials has been very encouraging.
I like the idea of adding venetoclax because it seems to me to be the most powerful of the three and most likely to mop up whatever cll cells ibrutinib is not killing.
I think for me there might be an approval issue adding venetoclax, since ibrutinib is working well on its own. Hopefully venetoclax gets a broader approval soon. jeff
tumor lysis is mostly avoided taking imbruvica for 3 months then starting the venclexta in the current study going on. I'm wondering if it is wise to wait for total end of imbruvica working. Just wondering.
This is what they are trying to figure out with all the trials going on. I missed out on two trials, for different reasons. The first trial added venetoclax after three months, the second one adds venetoclax after a year on ibrutinib.
While they don’t know how to sequence the drugs yet, the trial design gives us an idea of what the thinking is. I think they believe hitting our Cll with a double whammy at the same time is the way to go.
Indeed they think I plus V will be a cure for some people. So my current plan is to try to add venetoclax to my ibrutinib. That’s my doctors plan too. The unknown is how to get approval from Medicare for this. A broader approval for venetoclax would help.
It might turn out that it would be better just to wait until ibrutinib stops working. Personally I like the idea of hitting the Cll hard at the same time and try to get a deep remission that will allow me to get off both drugs and see how long the remission lasts. Some are at 20 years remission with FCR which gives hope I plus V remissions could be as long or longer.
how do you know you will need medicare approval?. I have medicare advantage. None of the antineoplastics have any restrictions on my formulary. although i havent tested it the drug processing would probably let it thru. now is it an approved course of therapy by fda. My doctor so far only does approved therapies[however if your doctor is aok-have him write a script and see if it goes thru processing I am a retired retail usa pharmacist. Drug processing is a different thing than approved therapies. computers let things thru unless they are specifically told not to. Medicare does not decide therapies. the fda does. Medicare decides which ones they will use though
A physician theoretically can write for off use of any drug. He or shee does put there liscence at risk if something goes wrong though.
My doctor raised the issue with me that getting approval could be an issue. He could prescribe it for me off label, but to my understanding Medicare is not required to pay for off label drugs.
blog.medicaremadeclear.com/...
If Medicare denies venetoclax for me, my doctor and I can argue for an exception. I’ll find out in July I think as it is my understanding at my July visit my doc will try to add venetoclax to my ibrutinib.
since i was a retail pharmacist-that is not exactly true. when a pharmacy processes a prescription they are not asked what will be the use. They just put the drug thru. It either goes thru and is processed with a co-pay or it gets rejected. rejections can be for many reasons. IF the drug is 'not covered' then the pharmacy will tell you to get the doctor to get you a 'prior approval'. What i'm saying is don't worry about prior approval until you get a rejection. Have your doctor submit the rx to the pharmacy=THEN-if it rejects try to get approval. Medicare MUST cover all drugs in 6 protected classes and anti=neoplastics are one of them. My medicare part d drug formulary has all anti neoplastics as covered no restrictions. My issue is my oncologist goes by the rules and won't issue a script until imbruvica fails. the blog you showed me is for drugs not in one of the 6 protected classes. in other classes the insurance gatekeepers only have to cary 1-2 drugs of each. Example=blood pressure pills of which there could be 50 competitive drugs. Most of the time they want yuu to get older drug that is now generic. Way newer ones in that class usually need approvals. But NOT the 6 protected classes.
Let’s just say our experience is different. I agree with the run it up the flagpole and see what happens theory. I don’t agree Medicare is required to pay for off label prescriptions or that just because my doctor prescribes it, they will pay for it.
How do they know your using it off label use? the prescription processors just process the rx. there is no link to what you are using it for when they fill it.
I don’t know, I just know Medicare and insurance companies deny payment for off label drugs all the time. There are dozens of articles discussing this to be found on the internet.
medicareadvocacy.org/cma-re...
I sent you a private message. you also showed me an article from 2010. The rules keep changing. However the most important thing is this- see if it is going to reject first-you need a script to do this-then if it rejects then you'll go thru the approval procedure-why do it then find out it wasn't necessary also both articles-one from 2010 and one from 2015 were both before Imbruvica available under approvals. if ventolax is transmitted and your still taking Imbruvica then-if the insuance company won't allow it it will know you want both. it may not get rejected
When I saw dr Hillmen in summer 2018 he said he didn’t believe there was enough evidence to use I plus V outside of a clinical trial (and same would be true for G).
But for sure the data for the VI is looking very promising and the hope would be a shorter time limited treatment period that then like FCR before it would lead to MRD negative status in some patients which could indeed be associated with long remissions.
if you have P17 deletion, and p23 abnormalities most of the earlier therapies used don't work. In my case it's the novel therapies or a stem cell transplant as my options. FCR is not useful for me-i don't know about cajunjeff
Gazyva acts on a different cd20 receptor than rituxan. thats why i mentioned it
No same FC receptors, just works better... also better ADCC.
Obinutuzumab binds to FcγRIII using purified proteins with a higher affinity than rituximab. Obinutuzumab and rituximab bind with similar affinity to overlapping epitopes on CD20.
I would go for Ventoclax but I am not sure about the timing. As one put it, you don’t want to use all your bullets lol. So hitting hard now vs saving for later, I would have to put in the hands of a superb specialist.
I had this discussion with two doctors I have seen at MD Anderson. After going through the risk benefit analysis with me I asked them both what they would do. They would go for it, that is, use both drugs now and try to get to mrd negativity and the get off both drugs.
That would be my thought from extensive reading, but I am no expert. Nothing I find says you cannot repeat them later if needed, unless you develop resistance to Ibrutinib.
Just had the same conversation at MDA couple months ago with same results.
Is it not possible that venetoclax could overcome ibrutinib resistance — and vice versa — so that neither drug would stop working?
they work 2 totally different ways. If imbruvica was not working the ventolax could be doing all the work
Because they work in totally different ways, ibrutinib could kill cells resistant to venetoclax, and venetoclax could kill cells resistant to ibrutinib.
Exactly that’s the theory. Remember in science theory doesn’t always work out when we look at it in real life. So for example in a recent study we failed so see rituximab adding benefit to ibrutinib tho that was only a relatively short term study so perhaps must not long enough? Having said that the combo of v plus I already had some pretty compelling data available for it.
What is b-pll?
Hi just diagnosed with B-PLL and prescribed Ibrutinib. Do you know if this is effective??
i have b-pll and started imbruvica January 2019. so far it seems to be working
Is Imbruvica good or bad for you?
Imbruvica
Atrial fibrillation on Imbruvica
Imbruvica to Venetoclax
Help with Imbruvica 
