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CLL Support Association
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More BIOLOGICS Insanity and No Ibrutinib

Again, here we are....out f Ibrutinib and BIOLOGICS not delivering my prescription.

Everyone here thinks I am too hard on whitecoats.....don't "give them a chance" and yet...every time I do....they try to kill me, everyone....

I should of had the Ibrutinib last Friday....and once again....It got delayed....and shipped on Friday for Monday delivery....except...it never arrived and now apparently FedEx lost it.

Biologics gave my wife a BS answer, it was shipped today.....except no, it shows shipped Friday...just gone, sitting in New Jersey.

They gave me another BS answer, trying to give me pilot/airplane talk....well...movie/TV aviation talk......except that changed when I told them not to play me stupid, I learned to fly when was 16, and hold a commercial ticket....and in fact, have flown my own airplane right into Memphis.....and then, again...the story started to change

And now, assuming FedEx "loses" it for good.....well, there is no method they know of where I still get my IB....so...I guess I don't get any this month.....they have the RX....they been paid.......but "oh sorry, not our fault"

I guess I disagree with this....I am not in charge of their suppliers, there sub contract companies, their shippers, etc.....Biologics is not off the hook, blaming someone else....they are responsible for making sure I have Ibrutinib on time....and for the second month in a row....they have failed.

The Biologics people are nuts. I am back to thinking they are just pushing this crazy $150 a month VIP club the offered last month......

This company sucks. Sorry for ranting at your guys.....but Biologics has driven me over the medical crazy edge tonight......

This post is unlocked so the whole world can this this incompetent horrible company.....I definitely am going so where else next month

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i thought you changed pharmacies?

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They scammed me last month....they were so sorry...it would never happen again, direct number for someone to help me solve issues......I got suckered and didn't change

I know, I know....I am frequently an idiot

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Crap! Thought it was all straightened out!

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So did I.....but at least everyone here can understand why the medical mill drives me crazy.....this is "normal" medical stuff in m life...which does not mean it is normal.....that might be the wrong word....it is expected in my life at this point......but drives me crazy because why? Why should this have happened last month and now this month....

The FedEx website showed a scheduled delivery for yesterday, before 4:30.....that has now changed to "Delivery Pending" no date, no time....FedEx is just as bad.....I remember when FedEx was great.....I stay away from them these days cause they lose stuff and throw TV's over fences.....what happened to the world?

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So frustrating!!

Someone suggested reaching out to your oncology team. I am wondering if they would step up. Their patient's life depends on their writing a prescription.

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My Doctors are great....Biologics had the prescription 12 days ago....I checked.

If the IB does not arrive today I will call my doctors and see how I get it from another pharmacy if that is possible....

What I can't stand the most is how all these big companies, billion dollar companies, think I want to hear their excuses for failing. Biologics basically tells me they gave it to FedEx and so if it is not delivered it is not their fault, and I have to deal with FedEx.

These companies hide their phone numbers and force us to talk to machines, force us to listen to pathetic excuses for being incompetent, waste our time trying to explain why even though they have a valid RX, and were paid $15,000.....the fact I don't have my Ibrutinib is somehow not their fault....

It is their fault, I don't want to hear excuses about their suppliers, or contractors...my problems is Leukemia....their problem is making sure I hae my Leukemia medication.....period.

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It is so ridiculous...simple...fill prescription, get paid, deliver... done. It's not a new concept.

Your oncologist needs to be advised besides the pharmacy problems, that you won't be taking your Ibrutinib as scheduled. That might get their attention. 💕

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Agreed, we are for sure not talking rocket science.....

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We have had great service from Diplomat pharmacy out of Flint, Michigan....no delays and wonderful customer service for Ibrutinib. (Been with them for one year now...)

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I asked my Hem-Onc team to change me to Diplomat.

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I am so surprised that you are having so much trouble. In fact my trial person told me that they liked Biologics best and they always call me and tell me when my shipment would arrive. Only once it didn't come on that day but was here first thing the next day. I assume that the FedEx driver goofed off and didn't finish his route. But ignore that VIP crap. None of the rest of us have ever heard of that. Biologics is the one responsible to getting it to you.

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I have zero idea what what is going on.....but man, they lie lie lie when things go wrong....they lied to Renee....they lied to me.....and still...to this second...I have no information on when or if it will be delivered. I have no way to get the pills from them....they got paid....I got nothing.

FedEx....Biologics....dunno who is screwing me around this time....someone.....

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It's a real predicament for sure. I don't know what to tell you. Have you spoken with your specialist? Maybe they could change you to the other supplier. Just a thought.

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i suspect that Fedex has few deliveries to your area. they try to delay until they get enough to make a trip worth while. before you say that's impossible think about it. they won't tell you that but come up with other reasons.

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Unbelievably frustrating. It’s hard to understand how a company can be so good and so bad at the same time. Different regional offices? Definitely get your doctor to find a different supplier! The Imbruvica site gives a number to call with questions. Hopefully alerting them to your issue will help to get it resolved for you and others. I doubt that you are the only one dealing with this.

1-877-877-3536, Monday through Friday, 8AM-8PM ET

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It drives me into medical crazyland....I am definitely not winning any friends bt I might be influencing them to join me in having a crazy bad day....week...oh yeah...month

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So sorry to hear what your going through Scott. Is there an advocate somewhere that could help with this so that you don’t have to deal with the stress of dealing with this crisis. And seriously a VIP club for cancer drug delivery. That cannot be a ‘thing’.🎁

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I was convinced last month maybe it was a coincidence and a scammer....but now...I am not sure....I mean two months in a row....I got no Ibrutinib. Just lies, more lies, more BS.....it makes no sense unless they are pushing their stupid VIP club....

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I am in Maryland and get Biologics a week in advance. I have never had a problem in over a year and a half.

Are you in California, Alaska or Hawaii that it does not make it in a timely fashion from New Jersey or North Carolina where mine comes from?

Maybe I should call them for you and say "don't pull the mask off the old Lone Ranger, don't tug on Superman's cape, don't spit into the wind" and don't mess around with Scottxxoo. Get his right even if it means delaying a shipment to the Trump family, the head of the FBI or the director of the IRS. :>)

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Biologics makes me wait until the exact day I run out...they claim it is insurance approval.....but it it's not....last month they had me "Scheduled" for delivery a week after I ran out. They are incompetent, morons or intentionally screwing me over....either way.....its bad

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Sorry to learn of this situation placed upon you. An interview with top guy could help. Afterall, the customer is their most valuable asset, your experiences maybe of interest to those in the company with traction. Or is that approach only useful on our little island?

Jig

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Hey Jig

I already talked to the top guy...last week. I won't ever talk to them again except in court.....I already got all the paper work done and started the whole let';s litigate thing. Its nice being being married to a woman who went to law school......

I want to know if they have pushed that VIP club on anyone else.....is it real, a scam from them, a scam from someone else.....I dunno....but I am going to find out.

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😮🤞

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Oh dear Scott how upsetting, frustrating and maddening for you . It’s not like you’re waiting for delivery of a new pair of shoes ...it’s vital medication. Where does that leave you in terms of your illness ? I’m shocked to be honest . I’m not sure how the system works in Ireland (very small country) as I’m still on w&w. I can imagine having to deal with ineptitude and lack of duty of care to the patient on top of being really ill would send me through the roof . I hope you get it sorted , you don’t need this added stress . Take care . Emer

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Hey Em,

My biggest freak out about all this I think is pretty simple....the Ibrutinib has been very easy for me to tolerate.....I am scared if I stop it for a week, or two waiting on my refill when I start taking it again it might not be so easy.....that is sort of how things go for me...I know, crazy.....but this whole thing is crazy....

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I’m raging for you Scott . Is it not enough that you have to fight to survive but to have to also fight for the medicine vital to that fight is beyond infuriating , insulting and cruel 😡.

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also, we are urged not to even miss one dose! I share your fear and anger....

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This sounds soooo frustrating, Scott. Enough to pull out your new curly hair. Hope this can be resolved so you get your drug later today ( Tuesday ).

As others have said, I would either call the drug company itself or talk to your specialists office for help with this problem.

Let us know if it arrives!!

Sandy Beaches

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Talking to them doesn't seem to help. Screaming and ranting doesn't seem to help. Let them spend time and money coming to Maine to answer my questions....I am at the point I can't even think about it.....all I can do it is fight and drag them into court and run their legal bill as high as I can for the nest 10 years.

Renee stopped practicing law because she found justice somewhat hard to locate.....she said it is only about fighting, only about grinding the legal bill as high as possible ...

Thankfully my legal bill will be zero dollars....

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Sorry about your troubles. You sure do not need the stress this is bringing you. Hope it gets corrected.

Bill1288

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Bill...

I think the stress is killing me some days...

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Is there a chance delivery would be more likely at a pharmacy? Inconvenient but maybe it could decrease the fedex stress.

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Ibrutinib has to come from a specialty pharmacy....that, whole thing Renee has been investigating and she thinks it is another scam. When a drug has been classified as specialty....it has to come from a specialty pharmacy.....no place else. That is another way they keep the drug prices high and limit where we can get it and how.

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That is nuts. But opiates are easily obtained anywhere..

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They want it that way....go figure....

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My blood pressure has gone up just reading your posts. I get my Ibrutinib from my local hospital/cancer center's specialty pharmacy. I won't change because (my thinking goes) I could walk there to pick up my prescription if I had to.

Virginia

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I am so sorry Scott, one doesn't need this added stress. I do hope that this gets taken care of quickly.

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Thank you. The stress is terrible for me....I can't take anymore

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Definitely talk to your doctor and ask them to intervene and definitely change pharmacy to another one. You don’t need this Agro. These drugs are very valuable so need to be careful managed in the distribution. It’s their job to make sure you get the delivery tho and to muck up two

Months in a row is no good! I would also definitely report it to the pharmaceutical company. Trust me the pharmacy will be more scared of losing the business so if the company advocates for you at a high level this will help no end.

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They told me to not miss a day on Imbruvica. If surgery or something like that came up a couple of days off was okay, but more than a week or 10 days would effect remission times and survival times. That may not be true depending upon the type of CLL, but it was sobering. I remember being off of Imbruvica for a short time and the lymph nodes started to come back. Once back on it the lymph nodes disappeared again. All that was planned and by choice, but going though what you are experiencing is very problematic to say the least.

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This is so unacceptable !! You need your meds when you need them and there should not be ANY reason why you don't have them. This enrages me. You do not need this added stress.

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Oh Pumpkin I know.....why do they cut it right to the last day....why are there always problems? I can't answer but I can for sure say with certainty....I don't need these hassles at all. They shouldn't happen. B

iologics, FedEx...they all got paid plenty to do the job of making sure I had my IB before I ran out.....but no...second month in a row....I ran out and neither company cares....just blame each other or tell lies and offer pathetic excuses why failure is just something I have to forgive and move......of course...

I have to spend hours stressing and calling to find out what is going on....hours and hours solving their problems. I won't do it anymore.

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since i am a retired retail pharmacist what i will say is the insurance companies computers will not let a presription be refilled early. A processing rx rejects and says to soon. The definition of 'too early' is not standard to every insurance company computer. I would need more info to determine the situation with your specialty pharmacy.

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I can refill prescriptions 4-5 days early without being shut out of insurance. It makes no sense to cut things down to the day with a cancer drug precisely because things happen - fires, floods, earthquakes, snowstorms, power outages, or just mistakes.

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i did not say insurance PBM';s made you wait to the last day-just that they won't let you refill extra early. I have no idea what Scott's PBM uses for it's refill cut off-however think about what you posted- if 5 days is the earliest it still has to get to Scott. say the five days falls on a Saturday. Or if the pharmacy and fedex is closed on the weekend. if those days are included then it can happen. I live near the specialty pharmacy. I pick up my own. Scott lives in Maine somewheres . I have no idea if his pharmacy pays for the next day Fedex delivery

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So can my husband....our cancer clinic calls in....and our pharmacy, Diplomat, calls my husband as well.......we live in a very small town in Wisconsin, and his pills arrive on time...from FedX

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A speciality pharmacy has a responsibility to make sure that medications are delivered in such a way that a patient won't be without. That means taking things like weekends and holidays into consideration. I went round and round with CVS when I had to have my IVIG sent from their speciality pharmacy. I at least managed to get things delivered when I needed them, but it usually took me spending about three days on the phone going back and forth between CVS and my infusion center. I got to know the supervisor very well. I'm sure he was happy when I went on Medicare and he no longer had to deal with me. Patients should not have to work so hard to get what they need.

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i agree. he should change pharmacies and maybe that will work better. However that does not change how the system works,

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The system seems to be working for others, which makes me think that the issue is with his particular center, whether they are directly at fault, or the delivery service has messed up and they are not finding a way to fix this.

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The worst problem for me is exactly what you said....they don't bother fixing it. THey want to shuffle off their problem to me.... "OH we gave it to FedEx you have to call them" or "Oh we need your phone number." like they haven't had it for 4 months.

They finally arrived with the FedEx driver insisting it was scheduled for delivery Tuesday....except when I told him I had a email showing a Monday Delivery he played stupid.

The Ibrutinib should of been here Friday, then it was sent Friday for Sat delivery...then Shipped Friday for Mon delivery....and finally arrived around 4pm Tuesday.

They had a signature required as well so I was stuck sitting at my house, waiting....waiting for two entire days.

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Great news that you finally have the medicine! Did you have enough on hand to avoid missing scheduled doses? Hopefully, you will be able to figure out a way to smooth things out for next month.

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Im glad you finally have your pills. Now get a new company!

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And not to be a Debbie Downer....but I am worried about the trade war with China as this is where Ibrutinib is made....

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I don't think the Ibrutinib is made there, I think a chemical in the Ibrutinib is made in China....but I might be wrong...

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I remember you were considering Diplomat. I'm with them, they use UPS to deliver meds to me.

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I told my doctor I wanted to use Diplomat from now on.....they hopefully will get my IB to me before I run out.....

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I've had good experiences so far (Diplomat), they will send it next day by UPS, you just have to let them know if they should deliver without signature or if you want to sign for it. Ask Diplomat for the imbruvica co-pay coupon and they should send you it and can run it on your account for you in the same call you ask for it (that's what I did) and then it will be there in your account for your next calls to renew prescription.

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