Cancer in Lymph nodes and VA stopped Zitgia medication

[Oregon56]

I had my prostrate removed and 62 radiation treatments in 2013 my Gleason score was 9. My PSA after the surgery, radiation and hormones 1 year later was .01 with quarterly check ups Howevet in Julyn it went to 4.5 and discovered it was in my Lymph nodes. I had Lupon shot and my oncologist put me on Zitgia and prednisone. My PSA dropped to .01 The Zitgia was about $12k each month so I went to the VA to get it filled. After talking with the VA's oncologist they said I'd get it filled however the oncology pharmacist decided not to fill it. My only med now is a quarterly Lupon and my PSA is has increased to .07. Has anyone had their Zitgia stopped as I have? The VA tends to discount illnesses and really doesn't seem give explanations. I'm very concerned with it in my lymph nodes and PSA increasing

[Oregon56]

Spell check!!, spelling should have been Zytiga that was terminated by VA.

[herb1 in reply to Oregon56]

Maybe the real question needs to be: "why did your doc (MO?) prescribe Zytiga in the first place. Was Casodex working? Was Casodex even tried together with the Lupron? As someone suggested: was the Zytiga prescription premature?

My MO recently asked whether I would be interested in Zytiga-I've been on (intermittent) Lupron+Casodex+Avodart for 17 yrs! but my psa is now hung up at 0.4. Originally I was GS6, but with lymph issues.

[Oregon56 in reply to herb1]

I was on Lupon and Zytiga. Now I'm only on Lupon and nothing else and my PSA is increasing. I'm really not comfortable taking a step backwards when something is working. Not to mention a lack of explanations from the VA, other than an OncologyPharmacist decided. Not my Doctor/Oncologist

[herb1 in reply to Oregon56]

Again, Oregon, WHY were you on Zytiga? Why not Casodex? Had you been on Casodex? Many drug plans (Medicare) require you follow protocols using the least effective/costly? first and then allow moving on to more effective/costly? Why and when did your doc put you on zytiga? what preceded it??????

[Oregon56 in reply to herb1]

I must tell you I'm done using this site, I'm not on medicare. I found out I had a reoccurance of my cancer after having my prostrate removed and radiation treatments it returned. I learned it had moved to my lymph nodes and AGAIN the fact I didnt attend Medical school i listen to my Urologist and my Oncologist. They knew my full entire history and they not me decided the coarse of treatment I trust them. As a Veteran I also earned wasn't give VA benefits. I asked my treatment plan to continue however my oncolgist but a Pharmacist with the VA said no. So I'm now going on 6 weeks of no medication and a raising PSA, I understand and witnessed collateral damage with the US Army, im not ok with that. AGAIN I DIDN'T go to medical.school as you surely have. I'm sure you are a supporter in ONLY words of veterans. Good luck giving advice and sign me off

[herb1 in reply to Oregon56]

Oregon, don't blame the messengers! Sounds like the VA is the place to work with and on! Also need to note that depending where and when you served, prostate cancer may be considered a result of military service...and that changes the picture, i understand. Good luck, Oregon, whichever way you go.

[Oregon56 in reply to herb1]

I'm not blaming the messagengers I can't AGAIN answer YOUR continued questions about why my Doctors put me on the medications they did. Bottomline AGAIN as you like to preface your questions, I dont know all I know is I'd like some medication with it now my lymph nodes. AGAIN I'm not blaming the messagengers and appreciate their hopeful contributions. I'm sure you are concerned about the costs of the VA and cutting treatment costs where they can. I hear YOU loud and clear, I sure most Veterans wont share your opinion however.

[Hidden in reply to Oregon56]

I find myself taking questions I can answer myself, to my doctors to make certain they can answer them.

[Hidden in reply to Hidden]

Apologies... answers I CAN NOT answer to my doctors to see if they can. I constantly ask “why do that?”. It seems, to me at least , that with this dis-ease, there is no one way to deal with it for everyone, so, I ask, and ask and ask until I understand.

[Oregon56]

Thank you, apparently the "oncologist pharmacist" has veto.power with the VA. What's frustrating is he or she doesn't even know my history. I'll try the patient adocacate with the VA, it's been very stressful for my family as I know it's important to lower my stress level.

[Hidden in reply to Oregon56]

I’m sorry , but it’s all about $$... VA or any other form of insurance.. they all are making cuts in my opinion.. We all need to vent in a positive way . APC , then ADt both stressful through and through. With time , Im adjusting to both, but for me it is not as easy as for some others. Hope that you can get through with flying colors and you get what you need ASAP. If something seems “ Not right” to you question and get answers.

[Tall_Allen]

They should not be stopping Zytiga until after your PSA hits 2.0 - and maybe not even then. I hope you kick and scream and make a fuss until you get it back. The squeaky wheel gets oil, or in this case, Zytiga.

[Fairwind]

As long as the ADT (Lupron + Casodex ) is working well, there is really no need to add Zytiga at this time..When your PSA moves up to 1.0 or 2.0 they will change your classification to "hormone refractory" and at that point will fill the Zytiga script for you..Your VA Oncologist will have to write a new script every month after reviewing your labs, also done every month...When the Zytiga stops working as indicated by a rising PSA they will stop prescribing it and suggest you consider chemo..(Dosetaxel)..Or maybe try Xtandi ......

The VA did not cut off your Zytiga..They never approved you for it as in their way of thinking you don't need to take it yet. Surly you must realize they can't be handing out $12K / month drugs like they were candy..Perhaps if the Oncologist and the Pharmacist got together and reviewed your case, an accommodation could be made...

The VA has a classification system for its patients. Number 1 through 8, something like that. The lower the number, the more benefits you are approved for. Do you know your "Cat" number ?

[Schwah in reply to Fairwind]

I disagree with Fairwind recent trial results (in 2017) showed clearly that Zytega and lupron together early reduced deaths by over 40% with lupron alone. I’m sure Tall Allen can show you those results to show the pharmacist

Schwah

[Mkeman]

If you get no help from the patient advocate consider a call to your Congressman. They are very sensitive right now to standards of care in the VA.

[Kevinski65]

Have u looked into clinical trials? Most of the time the drugs are free.

[Hidden]

Fight the VA!

[j-o-h-n]

When push comes to shove you gotta shove shove shove. You served our country, now let our country serve you! Thank you (and me and all the others) for taking years out of our lives to wear military uniforms.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/24/2018 12:32 PM EST

[gusgold]

Something is not right here. I went to the VA and had no problem obtaining Apalutamide which is a $12,000 a month drug