ADT Questions

JJclay
JJclay Member Posts: 9 Member
in Prostate Cancer #1

My husband's oncologist wants to put him on Lupron shots (6 month extended release) plus Zytiga daily and that means also prednisone. His PSMA pet scan is this week, but regardless of the results this is the protocol they want to start with. History is recurrent Pca following hemi ablation HIFU 12 years ago. MRI now shows 2 PIRADS 5 areas with seminal vesicle invasion. Biopsy showed several cores with 3+3, 2 with perineural invasion, but 1 core showed 4+5 with extracapsular extension. Oncologist has determined RT plus ADT is the best treatment. But my questions are about putting him on both drugs at the same time. Has anyone here been on both together who were not stage 4? And if you've been on both together were the side effects much worse than just being on one? My husband is already struggling with extreme fatigue and joint pain as he was diagnosed with PMR a year ago. I can't imagine how he'll feel if those symptoms get much worse than what he already has. Of course we will be asking the oncologist this week when we meet with him, but I'd appreciate any info from any of you that have taken these drugs. And also reading here I see most on Lupron get it quarterly- not every 6 months which seems like it would be a safer way to do it if side effects were intolerable. The oncologist also said he could take a daily pill- Orgovyx instead of the Lupron injections if he wanted although the pills are quite expensive. Any thoughts on this? Thank you for any insights!

Comments

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #2

    Complex issue for which I have no straight answer. But I can state unequivocally that Lupron can also be administered on a monthly and on a 3-month basis. I do think it's a good idea to go with a shorter interval if Orgovyx is out of question.

  • JJclay
    JJclay Member Posts: 9 Member
    #3

    thank you for your reply, Old Salt. That is my thought, too. Either try the Orgovyx or if going with Lupron do a shorter interval injection. That way if the side effects are really awful he can try a different drug. I believe the oncologist was suggesting the 6 month dose since we don't live that close. But the inconvenience of driving a few hours more frequently is worth exchanging for the possibility of less side effects.

  • Oldernow
    Oldernow Member Posts: 47 Member
    #4
    https://csn.cancer.org/discussion/328525/adt-questions

    I suggest you ask your oncologist for honest estimates of the cost of all the treatments. My urologist and radiation oncologist both said they had no idea what Lupron injections cost but they were confident my Medicare would cover the expense. I was shocked to find out that each of the 6 month Lupron injections I received were billed to my insurance at $40,000. That's NOT a typo. Medicare paid about $3000 and I had to copay about $300.

    All the medications are ridiculously expensive.

    I was started on Lupron (3 injections 6 months apart) shortly before having radiation for 28 visits. I also had Casodex for the first couple of weeks to prevent a worsening of symptoms that the first few weeks of Lupron can cause. No other medications were ever discussed.

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #5

    Hi,

    If it was me I would do the mildest shortest duration of ADT drugs before I started the radiation treatments. A cocktail of drugs like you describe does not sound like a very pleasant experience to me. I took Prednisone for a foot related issue about a year ago, I had to stop as it was affecting my sleep. Also there are things like Proton therapy that can be done after his radiation treatments if the cancer returns. A series of flatline PSA readings over months-years is the goal.

    Dave 3+4

  • JJclay
    JJclay Member Posts: 9 Member
    #6
    https://csn.cancer.org/discussion/comment/1718104#Comment_1718104

    wow- $40,000!! That's just crazy. My husband called our insurance company about Orgovix and our cost would be somewhere close to $1000.00/month. I'll look up Casodex as I'm not familiar with that drug. thank you!

  • JJclay
    JJclay Member Posts: 9 Member
    edited September 24 #7

    That's what we think, too Clevelandguy. The side effects sound awful for each drug, let alone 2 at the same time.

  • vmen70
    vmen70 Member Posts: 4 Member
    #8

    If I remember, starting with 2 drugs with radiation for a high gleason (4+5) score gives better results long term. You can ask if that is true and if that is the reason for the additional drug at the start.

  • Josephg
    Josephg Member Posts: 455 Member
    edited September 25 #9
    https://csn.cancer.org/discussion/328525/adt-questions

    I did this 2 year (Lupron shot every 3 months, 4 Zytiga pills daily, and 1 Prednisone pill daily) hormone/element cocktail as my treatment protocol, when I was diagnosed with a local metastasis in my pubic bone 8 years into my prostate cancer (PCa) journey. I'm still here with a fully acceptable quality of life, and it has been 1 year and 8 months since the 2 year treatment protocol ended, and I currently have an undetectable PSA. Results from Europe regarding this specific hormone/element cocktail have shown substantially increased effectiveness when deploying this hormone/element cocktail, versus deploying one hormone/element at a time, and that is why I opted to go with it, when my Medical Oncologist recommended it.

    Concurrent with this hormone/element cocktail, I underwent SBRT (high dose radiation in 3 - 5 sessions) with 3 sessions and 30 total Greys of radiation to specifically address the local metastasis in my pubic bone. I believe that this is what your Oncologist envisions for your husband's treatment protocol, once the cancer has been specifically located through the PSMA scan.

    Having been on the Lupron/Casodex hormone/element cocktail several years ago when I had my first radiation sessions (35 IMRT sessions with 68 total Grays of radiation across the entire prostate bed), I can tell you the the side effects of that 2 component hormone/element cocktail and the 3 component hormone/element cocktail that is proposed for your husband are about the same.

    I will note that the side effects associated with hormone treatments can impact patients somewhat differently in frequency and severity, but in the overwhelming number of cases, the side effects are more of an annoyance than debilitating. They have never stopped me from going places and performing activities that I wanted to engage in, and in my non-medical opinion, they won't stop your husband, either. I have listed a few links below, where I commented several years ago my hormone-related experiences with the Lupron/Casodex hormone/element cocktail, and if you wish, you can peruse those comments that are directly related to my experiences within these conversation threads.

    http://csn.cancer.org/comment/1414101#comment-1414101

    http://csn.cancer.org/node/299431

    Regarding the interval length between Lupron injections, in my non-medical opinion, the side effects will be the same for both 3 month and 6 month intervals, as the injection has a time release factor, presumably developed to be compatible with the specific intervals. You may want to discuss this more fully with the Oncologist.

    Zytiga can be an expensive medication, but I found the GoodRx had a price in some pharmacies that my prescription insurance could not match with my co-pay, so I purchased Zytiga through GoodRx for about $250.00 per month. While that is not exactly cheap, I figured it to be a good investment for my own well being. You did not list your husband's age, but if he is on Medicare with a Medicare Supplement, the cost of the Lupron injection is covered by Medicare Part B, so it will be no cost you you.

    Let me know if you have any further questions.

Discussion Boards