just what it says. I went to renew my monthly , extremely effective , Xtandi a couple of days ago and today I’ve been told that my Xtandi prescription has been canceled, and I see on my prescriptions list, Zytiga and prednisone. Never a single word from anybody about this for anything. Basically I’m going to start taking a drug and I've never spoken to anyone about it , and it has to start today or tomorrow.
Just fyi …..
Wow thats shocking. Have you reached out to your MO? Maybe they can get you onto one of the other lutamides?Let us know more as you find out.
my current oncologist is new as of January 1. I haven’t spoken to her or communicated with her yet.. she did write me four refills for my Xtandi , this morning, but had to take them back because the head oncologist told her of the initiative to stop prescribing it.
You have been on Xtandi and Lupron since the beginning correct? Clearly there has to be more to this story. I hope you can get it figured out.
Yep, since day one. All 5 of my previous oncologist have raved about how well it’s preformed for me. Even my new oncologist ( new Jan 1 ) wrote me 4 refills and was overruled just a couple hours ago. It’s a directive from Kaiser main office , in S.F. They ( the pharmacy personnel ) said.
What Kaiser area are you with? I’m on Nubeqa (since diagnosis as part of Triplet Therapy) and hoping they won’t try and do anything with me. They already screwed me over with my initial delayed diagnosis so I have little tolerance for their BS. No secret that I loathe Kaiser Permanente and how they provide zero support for men with PC This just adds fuel to my fire
I’d strongly recommend filing an urgent Kaiser grievance about the issue. Include how you’ve done very well on it (reference your history of PSA results) as well as the issues you had with Zytega. (List them specifically). If Kaiser denies the Grievance, you can go to (for CA) the California Department of Managed Health Care and file an urgent Independent Medical Review. Under CA law, Kaiser has to comply with what they decide under the IMR.
Please keep us updated as this potentially impacts many of us with Kaiser.
If you or anyone else needs help filing a grievance, I’m happy to help as I’ve written many
Bob
I’m with Northern California Kaiser. I hear what you are saying brother. My wife, the hammer, earned her nickname , believe me …. Don’t want to say more . She is a retired doctor - patient field trouble shooter ( for UCSF S.F. ). she knows every angle / trick in the book if necessary. Just saying yayay yay yayay
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Were you ever on Zytiga? It plus pred are supposed to be just as effective across the broad array of patients.
No, this will be my first time using it.
That’s what I’m hoping , but since it’s my first time ,it’s an unknown to me. I have some cardiac issues that I’m concerned about zytiga being an issue with and Xtandi has been working so well. My initial DX and condition was so dire that inpatient hospice was my first offer of care but I chose trying Xtandi - Lupron. My last 5 ( my Kaiser loses a lot of oncologist ) oncologist have literally been floored at my excellent response to Xtandi. Ima a kind of “ if it’s not broken, don’t fix it “ type guy . I know Xtandi works and without having to deal with prednisone.
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I'm sure it's a cost control effort on the part of Kaiser. Probably generic Zytiga.
Absolutely. Xtandi costs my Kaiser about $8000 a month worth, I read that generic zytiga is now about $180.00 a month. That’d be my guess, anyway.
“ shocking “ ….no kidding , devastating comes to mind as well. Taking me off a drug my 5 past years that my oncologists have raved about for its effectiveness for me and put me on a ( in my case anyway ) unproven drug along with the prednisone and all the baggage that brings. I think I might chit myself …just say’in
I can imagine. Hopefully it gets resolved for you if not for everybody. You really need that new Dr to go to bat for you.
Zytiga (abiraterone acetate) is not an unproven drug. It’s very effective
It’s not proven for me tho … I have numerous physical issues that would be of concern. Bp, bg, erratic qrs train etc. … it’s well proven generally but not for me with my truckload of complications. That’s what I’m saying.
As you know Clint has been on Zytiga and pred for the last 3 yrs.It worked well up until about 7 months ago. Side effects, tired, forgetfulness (not too bad) but they shouldn;t just change your drugs just like that.
I hope it does work for you for many years, and not too many side effects.
ps Happy New Year to you and your wife xx
Thank you dear, I’m staying upbeat that Xtandi withdrawal won’t be too significant and that I’ll be able to adjust my whole bp and bg et. al. , regimens quickly to adjust. I know xytega is a good drug and many people have good results with it. Time will tell. The hammer is furious to tears right now, but she says thank you , as do I , for the nice wishes. Give Clint a nice hug for me too. Happy new year backatcha yayaya yay yay.
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it’s cheaper
probably or they are fighting with the pharmaceutical manufacturer.
I’ve checked around and Kaiser seems to pay around $8000 for Xtandi and it looks like generic Zytiga is $180.00 a month. You probably nailed it. Kaiser has spent close ( if not more ) than $1,000,000 keeping my zombie carcass alive for the last 64 months. They prolly would like to plug that leak in the money dike. Just say’in.
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on my kp bronze plan i was paying about $160/ mo for a 1 month / 1k mg/ day abiraterone and i think the prednisone was about $20/mo. definitely less than $8K 😜
Roger that. $8000 is what Kaiser pays, I’ve been paying $100 a month co-pay.
I'm in the same boat with Kaiser. Not sure which direction to go this 5 minutes. It's an obvious cost control issue. Keep us posted please.
Yes brother … I’ll keep you posted , thank you very much. Yes after an hour on the phone again this morning , you are certainly right that this is a corporate cost saving initiative “ , straight out. That’s the impression I get.
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A million bucks?? They are indirectly trying to off you. I'd start looking under my car too. I hate when insurance does that crap. I remember how pissed I was when I went to abiraterone generic from Zytiga. I eventually got over it but mine was the same drug. I'm pissed off for you. RELEASE THE HAMMER!
No kidding ( seriously ) , yayayay yayayayay. I’d probably should be worried if my toothpaste doesn’t taste right yayayay yayayayay yayay. Kidding of course.
The hammer released herself yesterday , clinical people run out of the room when they see her coming. Yayay yayayay. And well advised from my experience with her. She was a field troubleshooter , Physicans Liaison, for UCSF S.F. For 20 years before she retired …. She earned that nickname. Yayaya yayay yayayay
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Zytiga is an antigen biosynthesis inhibitor, while Xtandi is an androgen receptor inhibitor
They have different forms of action…. It is possible it could be better.
I, like you have been on Xtandi for 5 plus years. We were getting close to switching horses anyway.
Yes, that is something intriguing about all of this , something that great guys here have pointed out as well. I’ve been on Xtandi for 64 months now, and no one would be surprised to see it quit. And like you said zytiga is different in its action. There are intriguing sounding possibilities associated with actually switching while Xtandi as still active. I’m pretty sure switching to zytiga would get me out of this wheelchair as well.
It’s just the “ if it’s not broke, don’t fix it “ and Xtandi ( to the amazement of my oncologists ) has kept me alive when all thought it was a long shot at best. I’m more familiar and adjusted to Xtandi, but if I’m forced to switch ( and I will be ) there could be some upsides to the switch too. Thank you for the upbeat thoughts buddy. I appreciate it.
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I am with Kaiser in Sacramento been on xtandi for 32 months...just got my prescription a couple of days ago...I checked my med list says I have two more prescriptions for xtandi...Hope that is the case....
me too brother, but if what Kaiser is telling me is right, you’ve seen your last Xtandi. My new oncologist wrote me 4 refills this morning …. Refills which were rescinded. Maybe you should mention this and ask about it so it won’t be as much of a shock. I hope the heck this is localized .
probably or they are fighting with the pharmaceutical manufacturer. I’ve checked around and Kaiser seems to pay around $8000 for Xtandi and it looks like it’s a little bit more expensive than xytega on Kaiser‘s bulk rate.
What does the drug formulary document state?I've searched on line and for 2024 Xtandi is still listed..in fact it's listed the same as generic Abiraterone Acetate.
What may have happened is when you're old MO left, the active prescriptions were cancelled. Your new MO should be able to write a new prescription.
Yea , nothing to do with that … my new oncologist wrote me 4 refills this morning, the oncology pharmacy notified me shortly thereafter that they weren’t allowed to fill new xtandi prescriptions. To get back to my new oncologist that I’ve never talked to yet and she would explain it to me.
Exactly what prescription plan do you have with Kaiser? Seems extremely odd that this could happen?....Xtandi is SOC now so what could drive this sudden formulary change directive?
I have top drawer OPM mail handlers type insurance, it’s excellent, covers most everything.
Boy howdy , I surely don’t know, but it’s screwing with my head a lot. All 5 of my previous oncologist have raved about how successful I’ve been with Xtandi … one of them ( that left December 31st ) just a couple weeks ago. She was thrilled with my success on Xtandi. Now it’s suddenly 2024 and Kaiser just can’t help rocking my boat destabilizing me and the hammer ( my wife ) the hammer is absolutely furious, about ready to get the shotgun out ( figuratively, speaking of Course ). One could guess going to $140.00 a month abiraterone, instead of $8000 a month Xtandi might have a role in it. Just say’in.
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So I did see a directive from 2021 that for new patients, zytiga is to be prescribed first. It didn't apply to existing patients nor patients who wouldn't do well on zytiga due to the liver issues and heart issues.You definitely need a copy of this directive, all directives need to be written, to see for yourself why Xtandi is being withheld from you in favor of zytiga.
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Xtandi works better I think, and you avoid the steroid but Zytiga is cheaper.
I'm just over 1 -1/2 years in and my doc added Xtandi (enzalutamide) tablets. Thats two, 80 Mg Tab daily.
This med is being dispensed monthly by/at - Arizona Urology. At 602.222.1900.
So far it looks like my insurance (United/Medicare) is going to cover it.
Fight On!
Andy
My insurance is OPM mailhandlers , it covers everything. This is being conveyed to me , by both oncology nurses and the oncology pharmacy as new Kaiser policy. Kaiser has spent about $1,000,000 on me , so far … that might be some part of whatever is going on, dunno.
That sucks....and I'll consider this KP behavior when i decide on KP or traditional Medicare.
But for your situation, would you consider switching Advanatge plans...right now is open enrollment until March 31.......
medicareinteractive.org/get...
I don't know.....can Advantage plans strike a drug from formulary at any time, for any reason? Of course, same question for Part D plans. If this is at least partially a financial decision, I'd assume all D insurers are questioning their cost for Xtandi vs abiraterone???
Of course, with your "hammer", you are well aware of appeal options..thru Kaiser, the state, and possibly even Fed/Medicare. But those take time, sadly!!!
Call to manufacturer re this????
No doubt the mounting number of surviving PCA men on ADT is hugely pressuring our medical system cost-wise.
Sigh for you!!!!!
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After my PC experience, I’d absolutely NOT recommend Kaiser to anyone. If you have other options during open enrollment other than Kaiser, I’d definitely suggest pursuing them.
what particulars re your treatment soured you on Kaiser? My problem is not having any certainty that care at other clinics here would be any more beneficial?
As a numbers guy, been very frustrated that Kaiser Docs have used no numbers when discussing pros and cons of various options, and I'd like to have some confirmation of numbers I've dug up using Doc Google. My wife has been Kaiser employee, so that has been our coverage.....wisely or not? Other than this with PCa decisions, been very happy with Kaiser.....the other day, after a new test result came in, Doc in ER called us at 2 AM and asked that we visit ER immediately...... my potassium serum level came in at 6, which set off the alarm for possible sudden cardiac event!!! I risked that and waited 14 hr. before ER.....where retest found K now at top of acceptable range......a day later , retested even lower. So, that action from Kaiser seemed laudable. They had a 24 hr caregiver for her when my wife went thru a 10 day hospital stay with encephalitis and basically lost her mind for a few days......virus invades brain!!! Cataract and thyroid surgeries have been excellent .....great communication system and easy record access. So, many positives, and SOME men here have been OK with PCa treatment at Kaiser. So, eager to know the Kaiser negatives for your PCa situation?
So many things…much of it stems from the Urology Department where I am in San Diego. Based on my multiple experiences and feedback from other patients I’ve spoken with, they prioritize doctor and Department efficiency over quality, compassionate care They do not care about men with prostate cancer—it is factory medicine at it’s finest My experiences with UC San Diego and Scripps were light years better than the “care” I received from Kaiser during the same time period. Here are the “highlights”:
1. When I first went to Urology with a repeatedly elevated PSA after six weeks of antibiotics (19 then 20 a few weeks later at Kaiser), the Kaiser Urologist blew it off as “likely prostatitis”. I was extremely concerned it was cancer based on my history and knowing how my PSA ran. I was pushing for a prostate MRI but he wanted to wait and repeat the PSA a 4th time before ordering the MRI. Did no exam whatsoever. (My PSA got to 29 before he ordered the MRI.). When I was finally diagnosed four months later, Gleason 9, 12/12 cores positive each with around 90% involvement. (Stage 4b after staging imaging was done.)
2. When I got my MRI results (three months after I was originally asking for the MRI because of my significantly elevated PSA), the Urologist emailed me the very grim news. “Likely aggressive Cancer which has already gotten out of the prostate.” E-mail. It still astounds me that anyone would think that e-mail is an OK way to provide a cancer diagnosis
3. When I got my even more grim Gleason 9 biopsy results, it was a six minute phone call from the Urologist. Zero explanation of the severity or context of a high volume Gleason 9. In fact, we even had to ask the Urologist what the Gleason score or number of positive cores was. He did not provide them at first until we asked
4. After providing said biopsy results, Urologist said he’d order CT scan and bone scan and his nurse would call me for education. Didn’t tell me where to call to setup scans. Nothing. All I had was the Urology call center number
5. Call to setup scans, Radiology says it’s going to be a month before they can get me in. Again, I have no resource to call for help other than 1-800-Urology. So, now I’m having to call every day to see if they had cancellations so I can get in sooner.
6. Nurse (from 4 above) never calls me. I have to call 1-800-Urology , leave a message then a day or two later she finally calls me. My “education” on my new Cancer: 10 minutes on the phone with her and a follow up email with a KP prostate Cancer guide. That’s really high quality education for a new Stage 4 Cancer in a 52 year old guy 10 minute call and an email
7. Call from Urologist post-CT and Bone Scan “sorry, can’t do anything for you, sending you to Oncology” was a 20 minute phone call. No handoff to Oncology, no discussion about my cancer, no reassurance, no discussion about mitigating sexual or other side effects from treatment. Nothing. Basically, you’ve got this bad Cancer, figure the rest out yourself. Not even given a phone number to contact Oncology
8. Zero (none whatsoever) support for men with prostate cancer. No social workers, no support groups, nothing. I’ve had to find all that out on my own
9. When I filed official complaints with Kaiser about the very significant issues with my initial misdiagnosis and horrible communication of MRI results, I got a written reply “you are seeing other Urologists now”. Kaiser Grievance Operations was almost impossible to reach I filed complaints with the State of California who agreed my initial complaint was not adequately addressed by Kaiser.
10. After all my issues, official complaints, and stirring the pot within Kaiser about a really substandard experience, I’ve heard from at least 7 or 8 other guys treated in that same Urology Department and they have very similar (in some cases, worse) horrible stories. Medicine via email and phone from Urologists and Nurses who are too busy to care. Most of these were after I had complained So, it tells me Kaiser has zero interest in making the patient experience better
There are more things but those are the “highlights” of my Kaiser prostate cancer patient experience.
My spouse is a retired Kaiser physician and we were so disgusted with the poor care and total lack of concern and support from Kaiser Urology we paid out of pocket to go to Scripps Clinic for second opinions. I think it says a great deal when a long time physician (19’years) doesn’t trust his own organization to care for his family.
The only bright spots in my treatment were my Kaiser Oncologist and how I could go to UC San Diego to get radiation. My Kaiser Oncologist was awesome. He really helped to get me to a better place after experiencing the shitshow of Kaiser Urology. Oncology feels like a totally different company than Urology. UC San Diego was also outstanding. Everyone was wonderful from the receptionists to the nurses, techs and my Radiation Oncologist.
I’ll never recommend Kaiser to anyone after my experiences with KP Urology. Worst medical experiences of my life dealing with them. My experiences were not one offs or personality conflicts. As I mentioned, I have spoken with numerous other men or their spouses who have had similar or worse experiences than mine.
Fortunately, Oncology has been great and I won’t have to deal with Urology again. If I do, I’ll also see an outside Urologist I trust for another opinion.
Please let me know if you have questions.
Yes I understand your frustrations>as high risk, did you ask for a PSMA PET scan.....perhaps the CT scan results made that unnecessary.....metastasis seen via CT scan?
I like the urologist here, but I could also probably have many of the same complaints about the way the system has worked..... no nurse contacted me for even 10 minutes education.....I've been my own teacher..thanks Dr. Google. Yes, Kaiser system limits facetime with Doc........didn't your wife also deal with that as KP Doc? And a different experience with Kaiser MO.....does he/she spend more time with you?
I had no other issues that might have explained my PSA 8, and one of the followup PSAs was actually 6.6, barely above the 6.5 Kaiser uses for men age 70+ ! Most Docs use 3-4 for all men I think? So, I visited the urologist, he said let's do biopsy, i discussed MRI with him...in 2019 prostate MRI was not yet SOC, but he agreed to order one . Well it's a long story...... honestly, as I reviewed the 2 treatments, and feeling great for my age , the treatments terrified me .....but decided I'd do the RT....and then the hammer fell with Gleason 4+5 <10% in one lousy sample of 18!!!!
So,, now it is RT + that feared ADT...and I'm approaching osteoporosis at age 75!! My urologists did call me with biopsy results......we had a scheduled phone appointment. He DID give me details of the biopsy results, unlike your experience. He then took my case to the Kaiser "tumor board" ? My procrastination about treatment may well result in an unnecessary PCa death.....5 yrs since initial urology consult in 2019. Scheduled for another PSMA PET, and I know that a finding of even "just" regional node PCa quadruple risk of PCa death over next 10 years....... the fairly new STAR CAP nomogram shows 10% Pca mortality over 10 years if treatment befor N1, but 40% !!! if N1 before treatment ....ugh!!! Knock on plastic.
It takes leap of faith I think to accept a treatment such as ADT that will almost surely reduce QOL but in the end absolutely no certainty of much benefit. This is scary stuff for all of us?
I have just wondered if I would have actually been a lot happier at other non _kaiser clinics...there seems to be no way to easily learn that info about other urology offices?
The Kaiser RO spent a lot of time with me,,,,,,but somehow just don't click with him...I know he is a dedicated guy, said he works to 8 most days, former assistant or associate prof at U Chicago!! Uro told me the RO is a numbers guy, so I would like him for that.....but in our meeting , he wasn't a numbers guy......I'm an ex-engineer. He even called me at 6 Pm one day to confirm I had ordered the PSMA PET scan....but after additional phone time that evening, he let me know he needed to hang up, and reninded me that he had already spent a lot of time with me...I don't know, but that statement bothered me, and definitely made me scratch my head in frustration!!!
Of course, I know it is a fact that all Docs Kaiser or not are on time-limited schedules.....and I'm noticing that my Sis has communication problems with Docs outside Kaiser...she is traditional Medicare coverage.....now waiting weeks just tolearn her MRI results? I'v thought of forking over probably $500-$1000 just to consult with an outside Doc, and the hassle of getting all my records to him, and most importantly, how would I decide who that outsde doc should be? What theoreticallly I would think men would want is someone who is almost full-time PCa patients, a numbers person in patient discussion, and unbiased and smart about both surgery and RT pros and cons ....someone who would, as a specialist, agree or disagree about what I have unearthed re both probabilities of success with various treatments and probabilities of experiencing individual sid effects and severity of those?
The urologist I met (for a fusion biopsy) at our local Med school clinic didn't seem to be that person!!! Refused my request for sedation, whereas Kaiser had no problem with sedation if I wanted it!! At least my Kaiser guy didn't object at all..even though not general SOC for prostate biopsy!!!
wel, I'm blabbing too much...sorry for your frustrating experience with Kaiser urology, and wonder if you'd felt better about my guy here? He is also definitely on the clock!!!
I really think the big issue is the way the Urology Department is run in San Diego. I’ve heard from other people who have had the same issues. They treat everything as needing the same amount of time (15 minutes) whether or not it is something needing little discussion (eg, a vasectomy) versus a new cancer diagnosis.
My husband and other KP physicians we know acknowledge the time pressures everyone is under from KP administration. However, in other specialty Departments (which my husband was in and we have other friends in) they get at least 40 minutes for a new patient appointment. My initial new patient visit was about 10 minutes and not all of that time was with the doctor. That department has taken efficiency to an extreme where IMO, it is negatively impacting patient care. (Patient experience was in the dumpster long before that.). I have never been to Urologists prior to Kaiser (and there have been numerous before joining Kaiser) who completely skipped any physical exam of a new patient. It was a complete joke and waste of time even seeing the first KP Urologist.
Fortunately, San Diego Oncology is not hell-bent on efficiency and the “conveyor belt care” model like Urology. As such, they have consistently always done almost all in person appointments, had comfortably long appointment times where I could have a discussion with the doctor (wow! Imagine having an actual conversation about a new Stage 4 cancer diagnosis), been super responsive via email (from the actual doctor, not a nurse with attitude like in Urology) and return phone calls. I’m not sure what I would have done had Oncology not been better than Urology.
Again, this is a systemic Department culture issue with Urology in San Diego. My issues were with multiple doctors (one being bottom of the barrel worse than the others) and nurses. It’s also not isolated to me as others in the area have experienced the same thing. The damage is done and I’m glad to not be dealing with them anymore. Kaiser’s incredibly insincere “we are sorry for your experience” yet putting others through many of the same things after me is the icing on the cake. Department Leadership does not care about the patient experience. It’s efficiency and productivity above all else
I’ll never recommend them to anyone after my nightmare experiences with Urology. While my MO was outstanding, it doesn’t make up for the five months of sleepless nights because of the many issues from Urology. That Department helped us to understand why people hate Kaiser and say “it’s fine, unless you’re sick.”
So, when we enroll in Part B in a few months after my wife retires......she will have a retirement benefit , a reimbursement account of approx $70k for any out of pocket, including Part B premium, if she enrolls in Kaiser Medicare Advantage. Cannot be used if not enrolled in Kaiser Medicare advantage. It seems you would advise walking away from that $70k?
Yes, exactly my thought re time spent with cancer patient vs time spent on less major treatments and diseases!! RO did spend 1+ hr with me......but really didn't feel my questions were adequately addressed!! But maybe would be no different anywhere else.....quite possibly I expect too much from time-constrained Docs?
One thing I don't like is no REAL 2nd opinions....mostly everyone in a given area follows dept protocol for the given condition....at least that is my impression>does your husband agree that is true?
I agree 100% about the “no real second opinions”. My husband and I have discussed this. I really think it’s Department dependent. Urology acts a little cultish, based on my experience. It’s a strange Department. The doctors all very much parrot Department policy and are very inflexible. They also seemed to really not like it when I asked questions or pushed back on recommendations. We ended up paying out of pocket and going to Scripps after dealing with Urology. The last Urologist I dealt with was very offended when I mentioned not doing anything until I got a second opinion. It was another big red flag to me.
Oncology (as well as my husband’s Department) seems to have much better patient relations. They also were very open to the idea of outside second opinions and discussing those recommendations.
I encourage anyone who has Kaiser (especially when dealing with Urology for prostate cancer) to get true second opinions outside Kaiser. It’s the only way you can make sure you are getting the best recommendations which are free from Kaiser’s bias.
Cost cutting policies like this one seem to often be implemented with a “let’s see how they(patients) react or see if they react at all” attitude. So they’ll(insurance) often backtrack for the patients who raise a fuss, knowing that they’ll still save a bundle on all the ones who don’t. Hoping for you that’s the case here.
Exactly, and this patient has stirred up hell , especially this morning on the phone. ❤️❤️❤️
We are on OPM also. They pay everything! So nice not to have to worry about the financial stress when dealing with PC.
Let's turn these lemons into lemonade. If you're no longer covered, then call for assistance!!!! You have commercial insurance? I saw OPM, made me giggle, Other Peoples Money!!!
I am covered with my government policy. Good til I croak. Mailhandlers ( a policy that started out on the postal area but became available to healthcare workers as well, probably others. ). I paid a lot of extra premium for this all inclusive policy , every month for 32 years.
All insurance payouts , of all kinds is “ other peoples money “ , the more the insurance companies keep , of other peoples money, the wealthier they are. Government or not … names change , the game is the same. In the government, paid in monies just benefit other insured people, none of it ever goes to shareholders or private pockets.
California meets NHS.
I take abiraterone through the VA. I could not tolerate 1000 mg a day and after two weeks I stopped taking it with my oncologist's approval. However, no alternative was even offered to me. I don't know if the VA has no alternative or what. In any case, after a couple of weeks, I suggested cutting the dose in half and trying that and so far that has worked for me, but my point is that abiraterone is not for everyone. (My intolerable side effect was a cough that was unceasing and seemed to be putting me at death's door. My oncologist said she had never heard of that side effect before, even though it apparently effects 17% of the users to some degree or other.)
Please keep us updated
😂😂😂😂 well, it gets worse. I’ve got two days of Xtandi left, so I told the oncology pharmacy to go ahead and fill that new abiraterone - prednisone prescription, and got “ this “ txt which basically says they can’t fill it for ??? Reasons. This happens , often, when I ask for a prescription too early. Dunno, really and at this point I don’t give a rodent’s butt much. Yayahahahaya
Well...now we know your real name 😜😜😜😜
Did you ask for an explanation? What did they say?
yes , I asked both the oncology clinic nurses and the oncology pharmacy pharmacist that question. The answer was , that it was a directive sent down January first , from Kaiser main office San Francisco, to stop issuing prescriptions for Xtandi. no more prescriptions will be filled for it, period.
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To me, this seems to be on the edge of the Corporate Practice of Medicine which in California is illegal. Your physician orders the medicine and should be making decisions about what you get, not the corporation. You could also consider a complaint against your physician for Corporate Practice of Medicine which is a valid complaint type with the Medical Board of California.
Yes that’s right on several levels, only got my current oncologist Jan the first. 😂😂😂. Never seen or talked with her yet, probably won’t until she gets her feet on the ground. Might be a couple months , considering my diagnosis which isn’t as urgent as I suspect many are. My wife, the hammer ( name that well suits her , junk yard dog attitude fits too ) has several logs on her Kaiser fire for other reasons…. I’ll be gone before any of that comes to fruition. In fact some of it requires my passing. Lots is going to depend upon Kaisers actions a lot.
Just say’in
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Last week, I met with an oncologist at Kaiser in LA. He said he can order whatever he deems appropriate. He said he is Kaiser's approval person - the buck stops with him.
You would think the oncologist has the last word , wouldn’t you. But my new oncologist ( new January 1st ,) wrote me 4 refills , said the oncology pharmacy, and a few minutes later I got a call back from them saying her refills were cancelled by the head of oncology due to the new corporate directive.
I have to say that a couple of “ white knights “ ( from Kaiser ) have kinda stepped forward and given me some “ wink wink nudge nudge “ advice / help to resolve this situation. One was, just now, able to help me get a Xtandi prescription to hold me until I see my new oncologist late this Friday. Which I did.
The second one didn’t say it out loud , so to speak, but gave me info that helps enormously with staying with Xtandi. I’ve been on xtandi 64 months , if it quit next month , no one would be surprised yayay yayayay. I hope it lasts for a decent amount of additional time … I may be burning my bridges to follow it up with Zytiga- prednisone prematurely.
One of the difficulties is my high / erratic blood glucose. Prednisone shouldn’t be taken if your A1C is over 7. ( says prednisone precautions) Mine is currently higher than that. Still my bg is DXed as “ medication induced “ ( due to SEs of Xtandi - Lupron ) . Does that mean if I switch off Xtandi - Lupron will my drug elevated bg will lower back to normal, where it was before I started ADT. Therze a lot of questions I have for my new oncologist when I see her. Yayahahahaya.
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The prednisone taken with Zytiga is only a replacement for the cortisol lost because of the Zytiga and is not an excess. Ignore "precautions" which are written for patients taking extra prednisone.
Why have you had so many oncologists? Turnover?
Yes, must be awful there.
This might be inappropriate or outside what you like to do on the group. And if it is, I understand.
What do you think about this ? Should I take a few days , to let Xtandi clean out of me ….. before starting my new regime of abiraterone ….. or do you think I should just jump right into it the day after I run out of Xtandi. ( two days from now ). I’ve poked around on the web about this but info seems skimpy and iffy. Web info says Xtandi has some withdrawal, sometimes.
Also …. Trying to see an upside in this, I wonder …..since Zytega has a different treatment mechanism than Xtandi ….. maybe now that I have my psa under control , a foot on its neck so to speak, would switching suddenly to a different method hit it harder than ( say ) either one alone. Probably wishful thinking and there has probably been a failed clinical trial on this, but it’s an intriguing thought yayayay yayay yayayay.
Thanks big guy,
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You don't have to dry out from Xtandi.
I like the way you think about hitting it as hard as you can. In fact, in one of the STAMPEDE trials, they tried both together -- it turned out that there was no synergy in effectiveness, but it did have more side effects.
thelancet.com/pdfs/journals...
Xtandi "withdrawal" is a different thing. As with the weaker anti-androgen, bicalutamide, the androgen receptor can learn to feed on it, and if it does (which is much rarer with Xtandi - it seldom happens), withdrawing Xtandi can make the PSA go down.
I am not familiar with your health system, but could your MO (or even you) write to Astellas and try to get you Xtandi as compassionate use?
I’ve never spoken with my new oncologist ( new Jan 1st ) , but I know Kaiser hates going off plan. When I finally see her ( probably 2-3 months after she catches up ), I’ll ask for sure. The fat lady will have sang by then tho, prolly a moot question by then. Thanks
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Can't you just "message" your new doc and ask your questions instead of waiting. I send messages all the time with questions. Good luck.
I’ve never heard of that with my Kaiser and direct access to the docs info isn’t provided from my Kaiser site. I can send emails etc. but my new oncologist is just days old in the system and not even on my Kaiser provided contact list yet. Probably take a while to get that set up.
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No Kaliber, no fat lady is going to sing. This is above my pay grade but I pray you will be able to beg, borrow or steal (or all 3) and get your hands on some Xtandi. One way or another I believe you are going to get some and you'll be good for a long time. Maybe the manufacturer? Hang in there.
Thanks for the nice , supportive, thoughts….. I really appreciate it. I’m afraid all this is in the rear view mirror by now. Maybe I’ll have fewer SEs with this new med change. Always trying to find a way for my glass to be half full. Only time will tell and I’m expecting a few bumps and rough places to I want to persevere.
Much love ❤️❤️❤️
Hey Brother, that's F'in BS for them to just stop a med that kept you upright.
I guess Kaiser ain't gon cover Pluvicto for me, if I ever get to the point when the IMRTs fail
Btw, I may have access to Xtandi and will msg you if it works out
Nod nod wink wink
Fight on
Love you Kal
hey buddy …. Yep this whole fiasco is da chits and pretty destabilizing for both of us, but the hammer much more so. That and due to Kaiser having rotating oncologist, I don’t even have someone I can discuss this with at this point. I didn’t even know about it until I tried to renew my Xtandi a couple days ago and it wasn’t on my meds list anymore. My new oncologist tried to order me 4 refills , today, and “ they “ wouldn’t let her. She actually did, and the prescriptions got canceled.
Ima just going to forge ahead and “ do it “ …. Xytega is a great drug , as many here have attested to. Hopefully it all will go with minimal sickness, mental, withdrawal and pain issues. I’ve got to “ maintain “ here to keep the hammer from psychological collapse , it’s really causing her to freak out. Boy, if it’s not one thing ,it’s another …lately…. Seems like anyway. I’ll probably have to deal with some things, but ima a tough guy ( he says, in a small quivering voice yayay yay) It’ll all prolly be fine in a bit.
Thank you , buddy, for the offer of Xtandi, I’ve had a couple more too … all of those - yours nearly ( does ) bring me to tears from the compassion and brotherhood here in this group. I love you guy, I can’t express how much that means to me. It’s seriously deep stuff. I never realized how much I cling to Xtandi keeping me alive , not until this happened. I’ve got a bushel basket of co-morbidities that could gum up the works, but mostly changing ADTs has been done by ( prolly ) 1000s here before me , after I get the initial “ things “ cleaned up ( adjusting my bg, bp, bowels, etc. ) everything will probably be fine if my poor old wrinkled crumpled body can handle the stress yayayay yayay .
Again thank you buddy, much love back at you. You are really kewl.
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I feel your pain my friend. No Kaiser plan here, just regular Medicare. I was on Erleada but had to get off it because it's contraindicated in my MM treatment. So my "choices" were Dialutimide, which is the blocker and the one my Oncologist wanted me on or Abiraterone + Prednisone. Both were initially denied until the doc appealed, then they denied Nubequa and approved the Abi. Now that I'm through my MM induction, I asked him to appeal again and he said, based on what? I got nothin. I just got a little fatter around the stomach is all. What's strange is that I was approved for Erleada by Medicare before my blood cancer diagnosis and it's $14k a month. So why Nbequa is an issue, is a mystery.
That’s a real good question, no doubt some corporate angles in there someplace,. I used to dismiss “ corporate “ and medicine mixed together, but clearly my latest experience shows that cost cutting is definitely on Kaisers mind. Plus the near one million dollars they have already spent on me might be starting to bite them. Just say’in 😂😂😂
Bruddah Kal, ya know we got each others back and you and I especially have really connected over the last several years.
This PCa Band of Brothers will always support, encourage, inspire, and LOVE each other. I got you babe 😁
youtu.be/r5fFlI7MFeM?si=mOs...
Luv ya Kal and you be kewl too
youtu.be/wugWGhItaQA?si=mtc...
Boy, boy, crazy boy,
Get cool, boy.
Got a rocket
In your pocket,
Keep coolly cool, boy.
You bet buddy. These guys and gals are super as it gets.
I’m actively working on this, it’ll all get sorted out in the next couple weeks or so. I have a new oncologist that started Jan 1st. It’ll take a bit to get her established and running and im not the only needy terminally ill patient at Kaiser she’ll have to oversee. Losing a drug that has given me 64 months of unexpected additional life , without explanation, it’s kinda scary on my end. Yayahahahaya.
Love ya bro …
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Hoping for the best outcome my Bruddah
Live Long and Prosper
QoL on
Keep us posted
Love right back atcha💙
ryte on my little brother …. Thankee very much. Hope youve been getting out and having some QOL fun too.
I’ll do a follow-up post after I know something more .
Backatcha, more love too buddy.
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Corporate bean counters making medical decisions? Or Gov't ones too? reason.com/2022/09/07/some-...
Well, you and the Hammer will get er done 😂
Did a lil QoL to Thrift stores and found that poster of "In my Life" One of my Funeral songs youtu.be/ZqpysaAo4BQ?si=Ljf...
I put it above my Dad's Framed Flag in my office. May go to Ventura this weekend, hope not much damage from that storm
Others are:
youtu.be/DgHnqTmKhoc?si=y5-...
youtu.be/ibDnF_oDM2Q?si=oyN...
youtu.be/SlPhMPnQ58k?si=ef9...
youtu.be/4ZtJPYBOJmE?si=VOW...
youtu.be/LWnogG9cgg4?si=iVe...
youtu.be/AscPOozwYA8?si=7lc...
youtu.be/9A6SMJP-frg?si=kJV...
youtu.be/_-d9UZb26to?si=aVC...
youtu.be/CJCdz6Rn3ms?si=UNP...
youtu.be/KR4jCEMytj0?si=oYG...
youtu.be/mwnb_fbHAKw?si=9aa...
Sorry for hijacking your Post and dang I gotta cut my list down😜
Me ke Aloha Pumehana - with Warm Love
Yayahahahaya yayahahahaya. I’m happy to have my posts hijacked if that’s what you want to call it. Its kewl to see people jump in on my posts and for them to go off in any direction with anybody. I’ve said this a lot of times. Camaraderie and socializing on this group benefits everyone. Brothers and sisters , together in difficult times supporting each other. It’s a good thing buddy …. Im sure you know this better than
It’s been raining here most of the afternoon, raining right now but wx channel radar looks like it’s about over.
Love ya buddy
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LoL, ya know how my brain is and going off tangentially is well documented here on HU. We had a bit of snow, but mostly sidewalk and asphalt were iced over. Did Boyscout deed and escorted two older ladies out to their cars.
It's 29 out now and gon bundle up with several layers and do a mile to keep streak goin
QoL on
Luv ya Kal
Yayayya. She looks like I feel. Ima surprised you both aren’t out doing a quick 1/4 marathon around your block. 😂😂😂
It’s rained here some , not a lot…..been in the mid-high 50s days but back up near 70f next week …. But been cold at night. If we had ice down here , in the valley ….half the winter veggie crop supply for the USA would wilt. Some farmers keeping an eye on their citrus nights too.
Meeting my new on tomorrow afternoon.
Later big guy, I think that lady has a crush on you.
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LoL, about she looks like how you feel 😁. She's unstable, uses a walker, and daughter, also a pt, helped roll her in. Very nice lady, she owned the building I'm in now and offered to sell it to me in like 1999. And I declined an d now it's worth over a million.
Shoulda, woulda, coulda 😆 Just like I shoulda followed up 2010 4.7 PSA
QoL on Brah
💙💙💙
Just thinking outside the box. If that happened to me personally I would keep a close eye on unusual pains, swelling from Lymph nodes testosterone levels, PSA numbers and slow up of urination. All signs that I would bring up ASAP so xtandi could be Prescribed again. Making a case towards “if it ain’t broken don’t fix it” Saving money is one thing, saving a life is another. Hopefully they know the difference.
I hear you , and those are great points. I’d think my scrambled eggs - etch-a-sketch cardiac QRS train and my 7.8 A1C would both be disqualifying elements, but …right now …. I don’t even have someone to ask, due to oncologist turn overs at my Kaiser. It’d be my pcp, but she is nearly non responsive to me now …. She’s changed her new patient load to 18 years olds and under yayay yayayay. She’s is a new doctor and I’m her first seriously ill old man patient and it’s been a handful to manage. She is conservative Indian and hates giving out opiates , and I’ve put her thru the wringer with those yayayay yayay.
Good plan advice buddy, thank you
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Maybe you will feel better on Abiraterone plus prednisolone. I hope that you will take the full dose on empty stomach and that you will properly manage your blood pressure. I myself don't want Abiraterone but maybe it is not so bad. Lot of people feel great on it.
Yayahahahaya … well thanks brother. There “ is “ that maybe, for sure it couldn’t be much worse than Xtandi which has put me in a wheel chair. My oncologists have said that the reason is because im unusually sensitive to it ….but also why it’s worked so well for a person that was headed to hospice when DXed. I’m certainly hoping that I’ll feel better without losing the amazing protection that I’ve enjoyed under Xtandi. Change like this is scary tho.
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I believe if Abiraterone fails with prednisolone you could switch to 0.5 mg dexamethasone instead of 5 or 10 mg ? prednisolone per day.
If all above fails you could still try Xtandi again or even better Nubeqa?
That is the advantage of Abiraterone. I am also fairly scared of prednisolone or dexamethasone with Abiraterone because continuous use prednisolone or dexamethasone with Abiraterone shutdown the natural production of corticosteroids in your body. I am not a doctor therefore I don't really know exactly how long does it take to regain that ability of natural production of corticosteroids again. Hopefully it is possible. I didn't Google it by I think I read about it on this site but my memory is failing therefore ask someone to help you with this advice.
Hello Kaliber, a great start to the new year 😕. I would be worried too, it's amazing how much power these people weild over us lab rats.
I went to pick up my monthly pack of Zytiga recently and the pharmacie told me that I had the choice of the generic brand which would be totally covered or the original brand, the difference was, I would have to stump up 800€ a box for the pleasure.
The prednisone was also generic.
No choice then 🤯.
If you are forced to switch to Zytiga, which seems very unfair, I've been on it a long time now and found it works well.
I'm wondering if a generic version of Xtandi might be available soon, the patent must be coming to an end.
I really hope the you can wade through this, my wife sends you an E hug, 🤗 and I send you a manly hug 🤗.
geez, that sounds like a strictly cost cutting issue with Kaiser Northern California.
Sorry to hear what you are going through. Is there an appeal process?
Thank you brother, boy some great camaraderie on this group, it richly heartwarming. Yeah there might be some process but I’ve only got two days to figure that out.
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that’s very scary for me. I’ve been on xtandi now since Dec of 66. It’s worked perfectly for me.
Yea, me too …my oncologist calling it near miraculous, considering my horrible starting condition.
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I wonder if it's because it's a new oncologist that's prescribing it so Kaiser is seeing it as a "new" patient/prescription so they're switching it over to Zytiga.
Is there any possibility about going back to your old oncologist and having them write a prescription until you can get into your new oncologist and she can help you appeal the decision?
my old oncologist ( that left Dec 31 ) did write it into my exit notes and prescribed it before she left. I went to renew it at the beginning of January and the Xtandi was missing from my medication list. My new oncologist ( whom I’ve never met or talked to yet ) wrote me 4 refills yesterday, and the oncology pharmacy called me to say thy had been cancelled by the head oncologist. My doctors want it … what the hay is happening.
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It may be govt related. Xtandi is specifically called out in this article around some Biden Administration efforts to reduce drug prices. forbes.com/sites/joshuacohe...
Would it be illegal for me to mail you an unopened bottle of Xtandi? A foundation paid for it so it should get used. But I'm off the drug now.
Thank you brother , I’ve had several similar compassionate offers from the amazing brothers here. It would kick the can down the road and I’d still end up in this same spot. I’m deciding to just go ahead and face the uncertainty and hope for the great results other brothers here have had with zytiga.
Your compassionate offer is heart warming and speaks a lot about your caring brotherhood.
Love ya brother
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My Psa was 5664 May 2022 and I was in extreme pain and using crutches. I have been on lupron from June 2022 to Sept 2023 then zytiga and prednisone were added. Blood tests are great. All of them. Curcumin and magnesium daily. Curcumin to detox liver and make the body insulin sensitive. Magnesium so the body can properly process calcium. Both lower blood pressure. I had a dexa scan Dec. 1 and lowest reading was -1.0 which equates to normal BMD. ALP was 72 which is the lowest it has been in 10 years. By the way, I take 250 mg with a 300 calorie low fat breakfast instead of 1000mg on an empty stomach. I get 120 tablets from Mark Cuban cost plus drugs for $120 which lasts me 120 days or about $30 a month. By the way, Mets ribs, spine, pelvis, femurs, nodes and lungs. I was mostly bedridden for 8 months. That was two years ago, last month I shot a nice buck with my crossbow while hunting by myself and got him home without any help. Don’t be afraid of Zytiga but definitely research the two supplements. Best of luck and God Bless.
Great info and being mostly mobility impaired ( wheelchair ) being able to walk again would be great if I didn’t have to scrub off years ( months ) to get there. I appreciate your post and it’s triggered a couple more questions for my new oncologist as well. Thanks for the supportive words brother , I really appreciate it.
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Just a thought after reading through everything posted, did you try to reach out to the oncologist you were seeing, wherever he is now and ask if he would continue to treat you?
It was an elderly oncologist that came out of retirement to help Kaiser …until they found another new oncologist. Oncologist here at my Kaiser have been on a revolving door. Makes your head spin. I’ve had 5 in recent years and didn’t even meet two before they left.
Well, that doesn't sound like a good scene at all! I guess that is your only option from your comments so keep fighting the system brother! I have learned in my short journey so far you must be your own advocate because the system is designed to save money despite what you pay out and serious disease costs too much to treat! Good luck! It does get overwhelming but ya gotta keep on keeping on!
Yea …. I spent an hour this morning with oncology and the oncology pharmacist …. Mega finger pointing, oncology pharmacy did it, oncology dept did it, it’s a corporate initiative blah blah blah blah blah. Expecting a call back from pharmacy some time today. I’m so exhausted I can hardly hold my head up. Not sleepy really but man I’m so spent. I just don’t have the wherewithal for this stuff any more. There are good perspectives about switching, for sure …. But I’d prolly scrub off a bit of my remaining time left. At the same time, my daily life might improve “ lots “ if I do this too. Give a little, get a little I guess. I’m too tired to think right now yayayay yay. This is both bizarre and trippy.
Love ya guys
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From Bard AI:
Xtandi (enzalutamide) and Zytiga (abiraterone acetate) are not the same drug, though they are both used to treat prostate cancer. While they share some similarities, there are also key differences between them:
Similarities:
Both are androgen signaling inhibitors, meaning they disrupt the way testosterone and other male hormones (androgens) fuel the growth of prostate cancer cells.
Both are primarily used to treat castration-resistant prostate cancer, which means the cancer has continued to grow even after testosterone levels have been lowered through hormonal therapy.
Both are taken orally on a daily basis.
Differences:
Mechanism of action: Xtandi is an androgen receptor inhibitor, which directly blocks the ability of androgens to bind to and activate receptors in prostate cancer cells. Zytiga is an antigen biosynthesis inhibitor, which reduces the production of androgens by inhibiting an enzyme necessary for their synthesis.
Efficacy: Some studies suggest Xtandi may be slightly more effective than Zytiga in prolonging overall survival and delaying disease progression in patients with metastatic castration-resistant prostate cancer. However, research is ongoing, and both drugs have shown significant benefits in clinical trials.
Side effects: Xtandi is more commonly associated with fatigue, hot flashes, and pain, while Zytiga is more likely to cause high blood pressure, liver problems, and fluid retention.
Thanks for taking time to provide your great reply. I’ve only been on Xtandi ( for 64 months ) and I’ve had intense side effects from it . It’s literally put me in a wheelchair. But, it’s saved me from the jaws of inpatient hospice ( my first offer of care when DXed ) and all my oncologist ( 5 ) have been astonished about how well it’s worked for me ( this, considering my extremely dire initial condition when DXed ). Im the kind of “ if it’s not broken don’t fix it “ type of guy. Clinging onto something that literally has given me 64 months of additional unexpected life.
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That really sucks, mate. Hope you can get it reinstated soon. I googled how much it costs the NHS here, and was shocked to say the least.
Thinking of you, and hoping it goes to generic very very soon.
Cheers
John
Zytiga has proven efficacy. Having said that, it may have worse side effects and if patients have issues they should be able to use Xtandi. I had elevated liver enzymes with Zytiga and my doctor discontinued it for a month. My liver enzymes got better and if they stay better he wants to start me on a lower dose. I don't like that vs. just moving me to Xtandi. Insurance approval is always an issue.
Exactly … numerous concerns should be addressed with this change before it happens and I have a new oncologist ( January 1 ) that I’ve never met and will take time to get to as she gets her feet on the ground. But I have two days of meds left. Kripes. Yayahahahaya
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I'm sorry your going through this. We went through two similar bouts of denials, appeals and then eventual success for Zytiga when originally prescribed. It was insurance company related but it all boils down to money. We did what a few here suggested, made a lot of calls, got the right process / department, gathered evidence, wrote an appeal and were (BOTH TIMES) eventually approved. For a drug that was keeping my husband alive.
Good luck and prayers for you while fighting this system... you SHOULD be able to just focus on the fight for QOL and to battle the beast.
For years and years Zytiga was prescribed before Xtandi, and the results were better that way.
This was the case until Zytiga went generic and the price dropped drastically. Then literally overnight Zytiga wasn't being prescribed by doctors anymore and Xtandi now was prescribed instead of Zytiga.
Before the two drugs were in the same ballpark price wise but Generic Zytiga price dropped drastically.
One might conclude that the profit selling Zytiga for hospitals, doctors, and pharmacies dropped drastically and they made up for it by prescribing Xtandi.
So the order of these drugs was always important as You could take Xtandi after Zytiga failed but going the other way Xtandi rarely had lasting results if it was effective at all
Side effects were much greater/severe on Xtandi, many people could not stand the Xtandi side effects.
So now Kaiser is making a prescription drug coverage change?
The data from studies would seem to support not switching to Zytiga after Xtandi fails. So there’s that. Of course Kali has been doing well with Xtandi and maybe there’s not so much data suggesting the switch is unwise before Xtandi fails. Regardless, I’d be pulling on every ‘straw’ I could find the support him staying on Xtandi.
You’re absolutely right about the economics impacting the choice of meds prescribed. One study I read showed physicians who received ‘honorarium’ payments from Xtandi’s manufacturer were much more likely to start off a patient with Xtandi, even though the data suggests Zytiga is maybe the better of the two in terms of successful succession of treatments. Now that the government is lowering the out of pocket drug cost cap for many retirees, it would appear the insurance companies may be looking for ways to not shoulder any of the cost burden which might filter through to them.
yea it does appear that Kaiser has made this coverage change as of January 1. You are right… switching to zytiga “ after “ Xtandi does miss that zytiga - Xtandi sequence advantage as well. I don’t think that was known when I started Xtandi 64 months ago. Thank you for your input, I appreciate it.
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Shocked with you and everyone here. Praying for a good outcome for you.
With so many MOs leaving the practice in your area, the writing is on the wall, regardless of corporate drug policies. If, as someone above indicated, there is still open enrollment available, I would wave goodbye Kaiser and try another plan, opening up the network to other oncologist opinions and practices. And looking at your bio, congrats on your great response to ADT + Xtandi , making you still castrate sensitive! (It may not be the cancer drugs themselves that put you in the wheelchair). All the best to you and get out of Kaiser!
Well Fresno is just a country agricultural town of 600,000. It’s surrounded by the glitzy and beckoning mega metropolises of the S.F Bay Area and L.A. basin. We are basically a whistle stop for visits to the High Sierras… China Peak , Yosemite… and Kings Canyon national Park. Pay would be vastly greater in the big cities, especially for a skilled oncologist. Sadly we only have two other medical centers in town , which are famously inadequate. Not much choice around here unless I want to drive 3 hours to one of the metros. Yayayaya. Both myself and my wife strongly agree with you. It’s a mess down here if you are seriously ill and need some kinds of specialist.
Preciate it brother.
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Hi Kaliber. Well, I do know the territory slightly, but not really, having grown up in N Ca. Looking online, I do see some Fresno MOs associated with cCARE. Maybe there is hope beyond Kaiser. All the best!
Thank you brother. I’ve spent a lot of time in Mt Shasta at the Zen monastery there. Just love all the pristine forests , seashore and lakes. Wonderful.
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Oh man. Not cool at all. Your head must be spinning at this afront.
Someone already said the ugly quiet part out loud which is the sequence of Xtandi to Zytiga is usually of little benefit and besides our mantra is if it is working dont change it.
I hope the Hammer and you can even if it takes a lot of time and effort get this changed in your favor to Xtandi thru whatever means....communication with high ups at Kaiser, California government etc.
I'm thinking of you and really looking forward I hope anyway to hearing you got this turned around. Please dont give up on getting things set right with this.❤️❤️❤️
Thank you buddy, I appreciate all your good thoughts about this. No quitting gonna happen on this end. Nuuuuooooo. Yayahahahaya.
Thanks to everyone here ….I see two paths forward ( not under my control ) one is to fight for Xtandi until it quits ( I get the maximum life extension that way ( from xtandi ). Then move to zytiga.
The second is to make the jump to zytiga- prednisone , now, which probably scrubs a little Xtandi or died life off prematurely but improves my daily life dramatically… might not even need the wheelchair anymore and I could walk again. Not assured on that tho. Probably Kaiser and happenstance will make that choice for me.
Love ya buddy
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to everyone here : wow, 115 hits ( so far ) …and this has been a stunning outpouring of love and camaraderie. The love and compassion is flowing like honey. I think it’s ok to say that this group is a humanitarian godsend…filled with wonderful guys and gals. If nothing else , this thread proves it dramatically.
I send my love and thanks out to all youse guys ( youse for J-o-h-n ) and all of you should feel warm and fuzzy for having this amazing resource available to you. Best wishes for a great new year for all of us.
I love all you great people
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Hi, I'm not sure if this will apply to you. But I get a grant from the manufacturer. I think the max income for getting a fully paid grant is 90,000 give or take a few.I have been on Xtandi for about 4 years and has just started giving up on me.
If there is a social worker in your oncologist office they can apply for you.
I'm curious to see what's next for me since I have a reoccurrence in my prostate. Still waiting to talk to oncologist.
Good luck!
Thomas
that’s an intriguing thought isn’t it ! I wonder what my new oncologist would think about me bringing my own Xtandi to the table. I wouldn’t qualify under the income limits but there are other possibilities that I might consider.
On the group, I’ve seen that a lot of guys are switched to Zytiga - prednisone , after Xtandi and vice versa. Of course it’ll ultimately depend upon what your oncologist thinks and all your physiological issues.
Thank you brother
😁😁😁
Thank youse for the Thank youse...
You know I can't resist, but I gotta, just gotta.
"Did you and the Hammer ever think of changing over from Kaiser to Frazer?"
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 01/04/2024 8:08 PM EST
yayahahahaya yayahahahaya if we had a Frazer dealer in town, we’d definitely be giving them a look. Maybe Nash Rambler or the more sporty Studebaker .
Love ya buddy
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Avanti. Yeah! Ultimate Studebaker
Yessir … it was uniquely amazing looking ., kinda Tesla truckish , that stainless steel gleaming. While not a ground thumping muscle car like big bore corvettes and dodges , still peppy and kewl / hunger inducing.
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That’s odd because when my MO put me on Zytiga and prednisone I had to sit down with the nurse who explained all side effects as well as how to take it and then I had to sign paperwork allowing treatment. The whole thing took about 30 minutes. I had some questions which she answered as well as scheduled me for blood tests every two weeks for a couple months.
I’m sure Kaiser is trying their best with revolving oncologist and working on hard core cost cutting which has caught me in the process. I get that of course. But … this takes away a life extending drug that has kept me alive for 64 unexpected months. You’d think they could plan this better and do better at taking into consideration the stage4 patients whose they are impacting with administrative financial change. Just say’in
That is so wrong. Unethical. Have your MO follow up with it and request a prescribing exception that you need Xtandi and cannot tolerate abiraterone. If push comes to shove tell them you are allergic to Abi. Forces their hand.
yayay yay yayay. That’d prolly do it ok, but later when Xtandi quits, I’d be screwed for a follow up of zytiga yayay thanks to the guys here and half Kaiser is starting to come around ( esp when you toss out words like “ medically “ inappropriate “ and “ not SOC “. In armed with great info, great questions and even a bit of experience for my 1st meeting scheduled in a couple weeks. Guys on the group have “ armed “ with knowledge and perspective help and other means that will get me to and thru my 1st meeting with my new oncologist.
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I realize this suggestion may not apply to KP subscribers, but I don't believe it was mentioned in the thread. In the US (this may apply outside the US too), if you have insurance through a employer provided/commercial insurance plan (ie NOT government based insurance, medicare, medicaid, aca etc), there is an Xtandi co-pay program which provides reimbursement up to $7K per year. Suggestion: pay for the initial single month fill and submit the receipts for reimbursement yourself (do not work the co-pay through your insurance provider). Many insurance providers will keep the co-pay reimbursement and all you did was lower the price for the insurance provider. I buy one bottle in January which meets my out of pocket insurance requirement for the year and then I'm reimbursed for the out of pocket amount through the program. Since I've met my out of pocket in January, the next 11 months are covered at 100%. If your out of pocket is lower, you can do the same thing over a series of months. I'm on a HDHP plan so its around $7K. It's almost like free insurance for the year.
My Xtandi co-pay is only $100 monthly ….. we are financially secure in our old age ( two retired medical professionals ) … of course, paying o$12,000. a month full retail price would be way more than I’d be comfortable with. Yayahahahaya yayaha. My insurance is excellent… I pay very little a year ( prolly $1400-$1600 copay’s. I absolutely expect my OPM insurance to cover everything. I paid “ high option “ monthly payments for it for decades…. I better get something back Yayahahahaya so far, it’s paid close to a million dollars …..and counting, hopefully.
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Were you able to get a copy of this directive?Not sure how you move forward with treatment if you don't have a copy of the directive. Something is very fishy here....they could be setting themselves up for lawsuits if this directive actually exists. Xtandi is now standard of care and a treatment option for those who can't use Abiraterone Acetate.
I’m too far down the food chain to get material like that directive. I see my new oncologist in about two weeks. Compassionate, loving brothers …. and Kaiser …. I anticipate as well ..will stabilize everything until I see my oncologist. The pressure is relieved for now and a short while … this will eventually sort out and I think I’ll be fine as it does , due to the help taking place, especially right now.
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Nah...if there's a directive, you have every right to have a copy of it. No hidden agendas allowed. If it were me, I would call the MO Office and ask to have a copy of the directive emailed or placed in patient portal where I can access it.
I see my new oncologist in a couple of weeks …..I’ll discuss it with her for sure. Thanks.
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The title of your post is completely inaccurate. Maybe true for you, not other Kaiser patients.
I was there this morning, and asked my Oncology Pharmacist, no such directive.
So, maybe it's your case that had them determine you are no longer getting Xtandi.
"Kaiser has stopped prescribing Xtandi, even for people midstream with it. they are switching everyone over to xytega and prednisone."
Please change your title.🤨
It’s hard to know what weight to give to your post. Your profile is blank Are you currently taking ADT plus Xtandi?
Im in the process of updating my profile. What would my profile say about the fact I went to Kaiser and asked.
I'm not on Xtandi, yet. My KAISER oncology pharmacist, this morning, said there was no such order to stop prescribing Xtandi. I decided to pay her a visit while I was there, as Im contemplating a switch to Xtandi from Zytiga, as it would only cost me $3200 once, then no charge for the next 11 months.
Im saying the chicken little post is not true:
"Kaiser has stopped prescribing Xtandi, even for people midstream with it. they are switching everyone over to xytega and prednisone."
I hope you’ll let us know if Kaiser approves a switch for you from Zytiga to Xtandi and if they do, your circumstances. In any case, good luck.
I can only relate my “ actual “ experiences and what I’m “ actually “ told by the organization / oncology pharmacy. It’s definitely not inaccurate for my Fresno medical center in the Northern California district of Kaiser. It started when I noticed my Xtandi prescription was oddly missing from my meds list ( after 64 month continuous use ) and instead zytiga - prednisone were on there marked as new drugs on my list. I had just seen my exiting oncologist on the 20th of December and she wrote my Xtandi was working very well and i should continue it. I called the oncology clinic to ask and my new oncologist ( which I haven’t seen or met yet ) wrote 4 refills. Later that day Xtandi was back off my list , removed by the pharmacy, said the clinic. Pharmacy personnel said it was a regional directive and they weren’t refilling it anymore. I did just , last evening, get a “ refill “ until I can see my new oncologist at the end of this week. Lots of bloodwork and psa monitoring needs to take place with my proposed new regimen.
Perhaps I could have been more specific in my post title, by saying “ Northern California district , or Fresno medical center particularly. Dunno, since they’ve said it’s all of the S.F central office region. Clearly it’s being done by someone unfamiliar with my case , can’t be my new oncologist, or my oncology clinic. It’s originating in the pharmacy, as far as I can tell.
I did talk to my PCP this morning and she was under the impression that I was starting the new treatment and wanted to urgently discuss watching my bg lots closer because prednisone is known to impact my bg substantially., she said. and I have a lot of trouble managing that.
I’ll do a follow up post adding to this post when I know more …. It’s seems inappropriate for you to jump in on this , since you have no direct personal experience with my medical center and probably none with my Kaiser main office as well. This isn’t going to rest on opinion, or 2nd hand information. I’ll post exactly what is happening from “ my “ first hand personal experience as it transpires. Next post about this will be this coming Friday.
If conjecture, one could guess it’s an initiative starting in my region as a test , who knows and likely none of us will ever know. Maybe when a patient reaches $1,000,000 in medical costs ( as I just have ) maybe it triggers something, someplace but oncology said it has nothing to do with me particularly.
In any event I’m currently updating and will continue to update this post or make a new one ( this one is too big ) …this post will have factual information as I. Directly experience it , first hand. Same as it has been up to this point.
thanks
Sorry to see that a spineless human decided to call you out using a "Chicken Little" mode of attack. Some people just don't realize it when they become a heartless, back-shooting, penny wise fool.
Thank you brother. Maybe this is a Kaiser administrator posting and maybe I could have been more specific in my post title ( which I’ve changed now. ). If this really is a new Kaiser initiative ( as I’ve been told ) , boy it’s a big deal that will probably stir up a lot of storm over it. It’s going to be interesting to keep an eye on to see if they are able to Institute a change like this. Lotsa ramifications involved with this.
Thanks for jumping in brother, I appreciate it.
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Kaliber I wonder if KP along with the US is making a Boycott against the manufacturer because of the excessive pricing.
statnews.com/2022/01/03/mar...
That’s an interesting thought , and who knows what other Kaisers are doing as well. I think I’ll learn more when I can get face to face with friends / associates that work there , so we can talk off the record and where prying eyes - ears aren’t Flavoring the conversation. This is NOT the way I wanted to start off ‘24 , for sure. It’d be nice to see government step in and stop the craziness, but that’s a whole bucket of worms of its own. Yayaya yayay.
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Zytiga failed, starting Xtandi. What to expect for my dad. 
Vertigo due to Xtandi?
Has periodic limb Movement Disorder in sleep - is xtandi ok to start 
