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Neither of my two Medical Oncologists on board with early Zytiga after early chemo

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Posted 8/1/2017 11:59 PM (GMT 0)
I am wondering why neither of my doctors think early Zytiga is a good idea. One doctor at Kaiser said they would approve it if I wanted it, but that doctor did not recommend it, thinking it was better to save for later.

The other doctor at the VA didn't indicate whether it would be covered but also didn't recommend it since I have already done early chemo. Same thinking, better to save it for later.

So that left me wondering. The doctors seem to be agreeing that early chemo is preferred for metastatic PCa. Are my two doctors an exception or is early Zytiga not as accepted at this point?
Posted 8/2/2017 12:10 AM (GMT 0)
The STAMPEDE and LATITUDE studies proved that early use improved survival over standard of care (which may include later use). This directly conflicts with advice to "save it for later." But... whether another cycle of docetaxel or starting Zytiga now is preferable is anyone's guess. You seem to have had an excellent response to docetaxel, which is a good argument for repeating it. Would Kaiser approve docetaxel with Zytiga concurrently?
Posted 8/2/2017 12:28 AM (GMT 0)
Post deleted for Rule #3 violations.

Post Edited By Moderator (Tudpock18) : 8/4/2017 4:51:08 AM (GMT-6)

Posted 8/2/2017 12:34 AM (GMT 0)
TA, thanks for the response. I was talking about finishing my last round of chemo, then going on Zytiga so my Kaiser doctor said they would approve that after chemo was over. My doctor basically said if there is a successful phase III trial, Kaiser will approve it.

I have had an excellent response to Taxotere. I will probably end up rechalleging it later as long as the cumulative side effect of neuropathy is tolerable. My VA doctor said Taxotere is preferable to Jevtana because it's less toxic, but would use Jevtana if Taxotere fails.

My VA doctor prefers Xtandi and talked about wanting to be able to use Xtandi in the future. He feels early Zytiga will reduce the chance of that working because of the cross resistance.

I got a referral at Kaiser to another doctor who specializes in prostate cancer. So there's a chance for another opinion.

I'm a bit torn at this point, it's hard to go against the recommendations of 2 doctors.
Posted 8/2/2017 12:42 AM (GMT 0)
Post deleted for Rule #3 violations.

Post Edited By Moderator (Tudpock18) : 8/4/2017 4:51:57 AM (GMT-6)

Posted 8/2/2017 12:57 AM (GMT 0)
Hi there,

What region of Kaiser are you in? They are covering it for my husband with no issues. We're in GA.
Posted 8/2/2017 1:08 AM (GMT 0)
My oncologist suggested Zytiga and then Xtandi before any iv chemo. The insurance company resisted, but did finally approve it.

(I am not on Kaiser)
Posted 8/2/2017 1:11 AM (GMT 0)
From what I understand if Medicare would approve the use of Zytiga concurrently with chemo then the provider should cover it. As has been said you have had a great response to chemo so the question would be why would you want to add it if you are responding so well to chemo?
Posted 8/2/2017 1:24 AM (GMT 0)
I wonder what the pharmacies at Kaiser and the VA pay for Zytiga and Xtandi......? As a starting point, it is being sold by an Indian pharmaceutical company under its generic name for $1800 USD for a months supply...Of course this generic version is not sold in the U.S. at least not openly sold...
Posted 8/2/2017 1:51 AM (GMT 0)
I am in Kaiser in northern California and yes they would cover it if I want it, no problem. It's just that my doctor there is not recommending it. And my other doctor at the VA also does not.

Just want to add something here. I don't believe in a general conspiracy theory concerning drug companies, but we have to keep in mind that there is a huge monetary incentive here for them to "prove" that using their drug for potentially another year or more is beneficial to the patient. Successful Phase III trials means big $ for Pharma. I have to wonder if this effects the outcome of the research somehow or biases it. I was reading about one trial that supposedly showed an improvement for Xgeva over Zometa and found out that half the people enrolled in the trial didn't even complete it. My question is: Which half and how did those people dropping out alter the statistics?

I'm not saying early Zytiga is not better, just that we shouldn't simply swallow whatever is given to us without some skepticism and further due diligence.
Posted 8/2/2017 1:52 AM (GMT 0)
Logos,

You seem to have fallen into the fallacy of the excluded middle on this discussion -- presenting a false dilemma where there are a range of options available between the alternatives you present. There is no either/or choice between listening to ones doctors or listening to information presented by knowledgeable members of online communities. One should do both. Starfinder's doctors are probably aware of the studies that Tall mentioned and they probably will be happy to explain why they disagree, or why they feel the studies don't apply. Most doctors like patients who ask questions and, armed with Tall's studies, Starfinder can ask some good ones.

Also, one more thing: please try to avoid ad hominem attacks on other members. You can disagree with Tall Allen if you want to -- I've done that myself from time to time -- but try to avoid name calling and personal attacks.
Posted 8/2/2017 4:25 PM (GMT 0)
I would listen to Peter. I was on Lupron/Casodex when the early use of chemo was recommended. As I was six months into it, the question for me was would it be effective or would I be better of waiting. In speaking to my Clinical Trial MO, his thought was that it was a personal choice. (I have left him to to going CR, good MO, long distance travel). In speaking with the two other MOs that I have consulted (Dan Farber and Tufts), one of which was at the conference that the early chemo use was presented, both were not sure of any benefit as the parameters of the trial did not quite fit my situation. Based on these discussions, I decided to save chemo for later, and maintain my quality of life. I am currently on the Zytiga protocol and chemo is likely in my future. Get the information and the medical advice and make a decision based on your situation. Non of us are the same.
Posted 8/2/2017 5:25 PM (GMT 0)
I am a bit worried about the tone of some of the comments. Of course you should weight heavily the advice the doctors give. That does not mean you should not ask others for their opinion as well as do your own research. For me that strategy has worked well. Here is why.

Last year I was diagnosed with advanced cancer that had spread to my lymph nodes. To make it worce, it was (still is) a rare form, Ductal, that there is little information on how to treat, let alone fully detect. I did my own research, asked people on this sight and others, and formulated a battle plan.

First, I had to argue with the surgeon (one of the worlds experts using DaVinci) to operate since it had spread to my pelvic area. Just a year ago most surgeons would not operate if it had spread. Just a month ago research has shown that removing the primary source of the cancer, even if it has spread, offers long term advantages. In addition, newer studies have shown that they recommend surgery for Ductal as it does not respond that well to Other forms of treatment. If I did not challenge the doctors this would of not happened. I had to fight to get them to test my pathology slides. That is how they found that at least 30% of the cancer does not stain for PSA (and is why I have regular scans). If I did not challenge the doctors, they would of not correct way to monitor my cancer.

When the results from the Stampede and Latitude studies came out I contacted my MO to see if she should add Zytiga to the the Lupron that I was currently on. After a discussion she agreed and I am now on Zytiga. Of note, my whole medical team feels the results form these trials are tremendous and will change how men are treated.

Hopefully you can pick up on this trend. While I challenge my medical team, aftera good discussion I go with what their recommendations. I think it is totally proper for people to share their experiences, suggestions and support to others on this sight. Never did I take any suggestion someone gave me as overriding the advice of my medical team. Any advice, suggestions or support I or others may give is just that. When a good point came up, I shared it with my doctors. On the rare occasion that there is dangerous advice, such as the use of baking soda and maple syrup to cure cancer, I and others have spoken up.

Just for the record (again), while I have a PhD, it is in Chemistry and not medicine. Any comments, suggestions etc., are form one traveler to another.
Posted 8/2/2017 6:47 PM (GMT 0)

Starfinder said...
I'm not saying early Zytiga is not better, just that we shouldn't simply swallow whatever is given to us without some skepticism and further due diligence.

That is exactly what the editorial board and peer reviewers do. When studies of major importance, like these, are published in the New England Journal of Medicine, the editorial board insists on seeing all the back-up data, including drop-out rates. All participants must be accounted for. Then the study goes to a panel of prestigious peer-reviewers who write questions that must be responded to. They can ask to see more data as well. Will there be some fraud? Of course. An unscrupulous person determined to commit fraud can sometimes get away with it. But since it would completely destroy his reputation and career and lead to major penalties for sponsors, it doesn't happen often. But this is where levels of evidence come in. Level 1 evidence means that the effect was proved by a large randomized clinical trial. There is an even higher level - Level 1a means that a separate, independent group of researchers confirmed it in another RCT. This is what happened with the Zytiga study. Even a conspiracy quack would be hard pressed to show that two independent groups of researchers colluded. We have few findings that establish proof as good as this.
Posted 8/2/2017 7:21 PM (GMT 0)
Logos,

If you ditch knowledge by consensus, then we are all post truth with no hope. No, thank you.

-- Carolyn

Post Edited (cspivak) : 8/2/2017 2:51:30 PM (GMT-6)

Posted 8/2/2017 9:30 PM (GMT 0)
Wondering if a lot of Oncologists are just slow to accept this result of early Zytiga and change the way they have been doing things.

I found it interesting that my Kaiser doctor strongly recommended early chemotherapy. I was initially resistant but after researching it, decided to do it. But the same doctor is saying to save Zytiga because you want to have it for later. I wonder if doctors were saying that about chemo right after the trial results were published. Before that, chemo was saved for later too. I wonder how long it took for doctors to start recommending doing chemo early.

It may still take a while to change this "sequential treatment" strategy that has been used for so long: First primary ADT, then secondary ADT, then chemo.
Posted 8/2/2017 10:55 PM (GMT 0)
Strange to me that you're MOs seem resistant. My MO, who is 70, said at my most recent appointment that he is glad he decided to delay the start of my ADT because of the recent studies supporting the use of chemo and zytiga upfront. Considering his age I might have envisioned him being locked into the old school thinking. He's on top of things and attends all big meetings. If insurance will cover the zytiga, I will do it on the front end. I'm not so sure about the chemo though.
Posted 8/2/2017 11:39 PM (GMT 0)
The "save it for later" argument is just faulty logic. If there is a survival advantage to using it up front vs "saving for later," one only loses -there is nothing gained - by saving for later. Rest assured there is plenty more in the pipeline that will be available later.

The survival advantage to early chemo was proved and presented at the annual ASCO meeting in 2013 - this isn't really all that new anymore. Zytiga was FDA approved in 2011, Xtandi in 2012, both for mCRPC. Trials had already started for earlier use by then, so it really doesn't come as all that much of a surprise that they are now proven to work better if used earlier. (I expect the Xtandi arm of STAMPEDE will prove a similar benefit for Xtandi).
Posted 8/3/2017 2:25 AM (GMT 0)
I agree and that's why I did early chemo. You go for the maximum survival benefit, whether that is now or later. And who knows if later will even come? For that reason, I would do it now even if it was for an equal survival benefit.

Does anyone know when the Xtandi arm of STAMPEDE will be completed? I'm more interested in Xtandi than Zytiga.
Posted 8/3/2017 2:55 AM (GMT 0)
Arm J combines Zytiga and Xtandi and just closed to recruitment in March 2016, so I wouldn't expect to see results before 2019. But you can get Xtandi for mHSPC on a clinical trial now:

/clinicaltrials.gov/ct2/show/study/NCT02677896

I'd be even more tempted by apalutamide or darolutamide.
Posted 8/4/2017 2:57 AM (GMT 0)
Post deleted for Rule #3 violations.

Post Edited By Moderator (Tudpock18) : 8/4/2017 4:49:30 AM (GMT-6)

Posted 8/4/2017 4:06 AM (GMT 0)
This thread went completely off the rails quickly enough.

If I had a clue what Logo was trying to say it might help.

But for now, this one is done.
Posted 8/4/2017 10:54 AM (GMT 0)
I have unlocked the thread...for now, since this is obviously a valuable topic.

Logos, I have deleted your posts on this thread as they were not civil and in violation of Rule #3. We sincerely ask that you not post on this thread any more unless you can do so within the rules of the forum.

Jim
Posted 8/4/2017 2:30 PM (GMT 0)
Thanks for unlocking the thread.

I appreciate the help so far from all who have posted.

So I'd like to know who on the forum has done early chemo and is now doing early Zytiga. And also what their results have been. I'm still up in the air on what I'm going to do.

It seems like there are quite a few people who have done early Zytiga instead of early chemo, and also quite a few that have done early chemo before the Zytiga arm of STAMPEDE was made public. My VA doctor specifically said he didn't think I should do early Zytiga because I've already done early chemo. I don't get that.
Posted 8/4/2017 3:11 PM (GMT 0)
Tudpock...wilco{will comply}...
Carolyn...we already are post truth...and quite frankly...have been for far more than the the past 6 months{Its just more transparent...recently...true irony}...no hope?...that fellow pilgrim...is not nor ever will be..."in the stars"...


My apologies for any real or perceived "slights" OK/back to the threads topic...Yes?...No?...Yes!

Off to the water...
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