Xtandi worked well for about 15 months but stopped --- DR ( MO ) now put me on monthly injections of lupron. Makes no sense to me and doing both has me really fatigued. Lupron is working!!!!
Is anyone doing both and why, my Dr was just too quick with me and said basically just follow what I say - nice guy but doesn't like to answer questions....
Why did you ever stop taking Lupron? That should never be stopped.
I'm no Dr but asked the same question 15 months ago and got with the same response --- do as i say- he does not liked to be questioned. I feel he has done well by me for sure and am hesitate to get a new MO - but doing both lupron and xtandi has me flat out on the couch. I'm hardly a shy person, but I owe my life to this guy. They recently did another international radiation treatment to a few new spots on my liver. That in itself, I'm told is 300 times the power of one systemic chemo shot to the body.
So massive amounts of chemo to the liver ( OK with this )
One systemic while in the hospital
And lupron and xtandi - all within 1 week.
Perhaps this is why I'm flat out on the couch.
I know TA you are no Dr but you have provided great advice - I just need to speak up.
I take it you see no reason to do both - your opinion only and my decision to make.
thanks
I'm not saying "no reason to do both." I'm saying one should NEVER stop Lupron, no matter what else one does with it. It is what is keeping your testosterone low. Xtandi without Lupron causes a build-up of testosterone. It is being explored as a monotherapy. If you are Xtandi-resistant, it may be time to switch it to Zytiga; or systemic chemo. Or something experimental.
Thanks again - have no idea why he has me on both. Did say don't be fixated on a PSA...
Do you happen to have links to: “it is being explored as a monotherapy .”
Most with advanced stage IV PCa start with something like Lupron, often "for life", to keep testosterone down to a therapeutic level. When the cancer cells find ways to live and thrive despite the low testosterone, that's when second line drugs (e.g. Xtandi) are added.
Anecdotally, 7 1/2 years ago my initial PSA was in the thousands. Lupron brought it down to 1.0. After a while my PSA got back up as high as 95.0. Adding Xtandi took it back down to 1.2 and a nice long run around that level. Yes, there are side effects. General fatigue has been high on my list, too. During the past year I've been dealing with a second type of cancer, while my PSA's been rising as high as into the 40s. Radiographic progression isn't looking too bad, though, nor are symptoms. My Specialist and my local Oncologist and I are still riding the Xtandi horse while I'm dealing with the other things. With the prostate cancer, I figure I'm still ahead of where I was when I started Xtandi in Nov 2016.
All our stories are individual.
Regarding your second type of cancer I was DX with Multiple Myeloma two years ago when I went in for annual Bone and CT scans to check for PCa mets. I had induction therapy then stem cell transplant. MM is now in deep remission. Also had a couple Melanomas that were successfully treated and DX about 15 years ago with CLL. Never needed treatment for that. I have been dealing with PCa since 1/1997.
MikeP
Close. Rp 6/17. PSA climbed 10 pts in next 6 weeks...to 63. Lupron followed by taxetere and Xtandi added after cycle (4 12/15/17) when PSA started back up. 9 cycles total. Xtandi was making me an invalid. Cut dosage to 80 mg and recovered. Back to work fulltime for 3 1/2 mo and retired. After a year PSA stabilized at 0.12/0.13 for 2 years. Then slowly dropped to undetectable. Last 6 mo--0.00, 0.08, 0.12, 0.11, 0.10, 0.15, 0.24. Starting back up. Monthly tests now still waiting to see what it will do. Orchiectomy in May 2018 so no Lupron for life..
Makes a lot of sense. Xtandi is their biggest money maker. On the other hand the science community is starting to realize is, with PCa, you need to hit it with everything at once. It adapts quickly, has multiple metabolic pathways to draw energy (even goes dumpster diving, salvaging nutrients from dead cells. Many people are turning to off-label drugs to accompany S O C. Some even boost Xtandi's effectiveness as well as other chemo. The main ones are metformin, mebendazole, doxycycline, and a statin. When I showed my oncologist the research I had done, he was willing to prescribe. The goal is to starve the cancer by blocking the metabolic path, weaken it, then kill the cancer with chemo and IV Vitamin C. I started in February. In September, 2020, I achieved stage 4 PCa, castrate resistant. The rule is "Do your own research". You have to know the beast and what will defeat it. Then convince your oncologist you know what you are talking about. Just maybe we will slay this dragon.
Could you provide the doxycycline clinical links re this issue-would be helpful?
As far as doxycycline as a cancer drug there are no clinical studies. No one will spend the money they can not recover. Doctors initially told me there was no cure, 2014, then metastasis, 2018. Since I have been reading everything I could find. Most of the information is from coincidental observation ( people taking doxycycline had cancer remission at a statistically significant rate from others in the data group ). I have been learning about this for 3 1/2 years. I am not the brightest so I don't understand much of the scientific jargon, so I can't give you a lot. Again, the rule is "You do your own research". It is like the big picture is made of a thousand snap-shots. I will give you a good place to start that helped me. Look up a book, "How to Starve Cancer", Jane McLelland. You can check from library. I did, then bought. Jane mostly pioneered use of off-label drugs to fight cancer. Cured her own stage 4.
oncotarget.com/article/2775...
careoncology.com/the-coc-pr...
canceractive.com/article/vi...
researchgate.net/publicatio...
canceractive.com/article/vi...
Thanks
Please expand on “and a statin”. Want to know more.
Please see my above reply to podsart. There is one link to statin use in fighting cancer. Again " Do your own research". Read Jane's book. Look up Care Oncology Clinic and read all the papers they cited. This is internet, can't believe me or anyone else. But Maybe we can get some idea.
Thank you
thanks...
Generally YOU START with Lupron and add Xtandi or Zytiga when the Lupron becomes less effective.I started Lupron in Jun 2018 with PSA of 1303. Lowered it to <2. Ten months ago added Xtandi when it spiked and doubling time accelerated. Now at .4
So working for ME. For a while.
Yes, very tired. I take long naps and exercise when awake. Both help. You just have to push yourself some in order to extend your life.
2Dee
thanks --- pushing as hard as i can, but perhaps i could do more for myself and my family....oddly enough i m not able to nap during the day, perhaps that is a good thing.... sure has beat me down with just the xtandi and now lupron is in me - hanging in. lucky to have married a great woman who is also my best friend - want a saint she is...
About four years after rad therapy in 2012 my PSA began to rise. RO took it as a sign of mCa. At PSA 10, he started me on Lupron with Bicalutamide. He told me the Bicalutamide was for adrenal testosterone while the Lupron was for testicular testosterone. I chose to have intermittent vs continuous adt. The PSA rose again after two years and when it surpassed four I had another Lupron plus bicalutamide three month series. And again two years later, same story. The RO then referred me to an MO after that, without explaining why, although I suppose it was because it was clearly not a radiological situation but a medical situation. So the MO tracked PSA butseemed to not worry much about the PSA as it rose, two years later. It rose slowly but steadily and exponentially until four years later it reached 35 and it happened the MO retired and I was passed over to another MO. The current MO put me on Lupron plus Xtandi...continuously, every three months for the Lupron injection and daily for the Xtandi. I always figured the Xtandi was for the adrenal testosterone like bicalutamide although the MO didn't say that. PSA dropped to <0.1 and is now flatlined there for nine months. Meanwhile, Lupron shortage led to Eligard, and in February I started Orgavyx daily pills in lieu of Eligard injections, Xtandi every day all along. Xtandi seems much more effective in lowering T than Bicalutimide was. (3 with Lupron/xtandi vs around 200 with Lupron/bicalutimide). So my point is that the Xtandi cuts the testosterone effectively with the main drug Lupronj/Eligard/Orgavyx, and there have never been side effects other than a sort of barely noticeable laziness, but I've been lazy pretty much all my life. I'm not a workaholic, a type B guy. I do feel tiredness but it's more like a lack of sleep or procrastinator due to nightime urination pressure, not from drugs. Tylenol PM helps stretch out the frequency. So that's my story.
thanks and a good story it is!!!! stay well...
I'm on both and to paraphrase my Doc, he says it's "Industry standard" for people like me with Stage 4. I think someone on this thread said it was to attack it at different angles. I think go with that.
I believe Tall Allen says medicine doesn't "Stop working" the cancer just figures out how to grow with less testosterone. That's just a paraphrase of course but I think I said it correctly. 
In my 5 months of treatment, my PSA was 538 and was said to be in stage 4 Prostrate cancer. I was started on Bicalytamide for a month, then had a once every six month shot of Lupron. I started Xtandi when I got the first Lupron, and now my PSA is.4. I run out of gas in the late afternoon every day and am having a fight sleeping due to leg spasms ( taking Ropinirole 4 before bedtime). With fair results, they work in about an hour or so and last for a few hours, then the legs twitch, and sleep is not to be had. I need to go to the bathroom 54-5 times a night which doesn't help. The lower PSA is great, but the legs are driving me crazy at night.
When you say leg spasms is it restless legs? I have had RLS real bad ever since my treatment started over 4 years ago. The best way to describe it is like pressure or tension building up in your legs to the point where you cannot lay still and have to stretch out your legs. That helps for about 30 seconds and then repeats again. It got so bad that I dreaded going to bed.
I have slowly learned what sets it off and lately it has been a lot better. Besides a prescription pill called Primapexal, I take Magnesium about an hour before bed. But most importantly I have stopped snacking in the evenings. I have found that sugar and nuts are bad. Especially cashews! I also am drinking more water.
Ken, everyone and their body chemistry is different. My Dx was Stage 4 in Oct 2020 (5 mos ago) w Gl 4+4=8. Inoperable (unless I have any luck soon). I started on Firmagon inject 1 p/mo for 2 mos. then Uro./Onc. Added XTANDI at end of 2nd month. It rose my T from 0.0 to 14.0 first month and 15.2, 2nd month. This flattened off my downward projection of PSA from Dx 47, to 8 to 4.7 at month 2 on Firmagon alone to 4.2 at month 3 w XTANDI added to only 4.1 at month 4 w XTANDI. We switched to Firmagon + Zytiga for month 5, and my T dropped from 15.2 back down to >3. I hope my downward path of PSA will follow. Next PSA & T blood draw will be April 18. In my case XTANDI was added at end of month 2, before any sign of Firmagon not working, and DID NOT WORK for me. No one knows why? Many say use everything up front, including Taxotere. Others say wait for Firmagon or Lupron to fail then add Xtandi or Zytiga. Still Art & Science in motion. We learn from this site and using our common sense and intuition. “To each their own”. My best to you and yours, Spyder
Ken any way you can take Barbie with you when you see your M O? Barbies usuallygrab the bull by the horns and get answers and then don't take no for an answer.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/29/2021 5:09 PM DST
I'm very lucky to have the best 'barbie' with me at all times... she has never been an overly aggressive person but is now. i played that role for years- she watches over all the time.... lucky to have her and two grown daughters that are clones..
I began ADT in 2010, and am continuing life without testosterone. I soon got over the initial side effects, and my fitness, strength and mental brightness has been just fine, and I'm 73, symptom free, and Psa presently 300, and now on Ra223. During last 5 years I've averaged 200km a week on road bike all over town and nobody over 60yo has ever overtaken me in my rides. During my time on getting 6 doses Lu177, I took Xtandi from dose no 4 onward, but it only worked for 8 months, and doc insisted I continue, and I could not get any answer on why continue it if Psa was more than doubling. I emailed Astellas Pharma, the makers of Xtandi and asked what were side effects of continuing Xtandi after is has obviously failed and does not slow down Pca growth. They just sent the usual pile of BS about vague side effects and told me to consult doctors, and they would not admit that Xtandi could be poisonous if I kept on taking it with not one benefit I could see.
So without causing a shouting argument with my oncologist, I stopped taking Xtandi 3 weeks ago.
2 months ago, my Psa was going up at 2.7 times a month.
I got first dose Ra223, and a month later I had Psa tests each 2 weeks, for onco and also for doc giving Ra223. last Psa rises over 2 weeks were 250 to 300, and this is a much slower rate of rise than for previous rise of Psa that was doubling in less than 4 weeks.
So afaik, Xtandi can boost Psa if "over prescribed", ie, its taken long after it has any of the effect for which it was designed to do, so thus becomes poisonous because I had reason to believe it sped up my Psa rate of increase, ie, it aided Pca growth.
But the Big Pharma company who makes Xtandi just did not like being accused of poisoning me, while docs disobeyed our laws about prescribing a very expensive cancer drug for no benefit at all. So they ignored my emails.
Medicare funded my Xtandi cost which was usd $4.00 at chemist each month. But Medicare should not have to fund a drug that has ceased to have any continuing benefit.
The doc giving me Ra223 thought I might quite right to stop taking Xtandi, but although she's one of the smartest docs I have ever known, and sensibly, didn't want to discuss it with my onco.
So after I quit Xtandi, rate of Psa rise has slowed down, something that is very welcome after only one dose of Ra223 on 26 Feb. My second Ra223 will be asap after Easter.
I expect my heart rate on and off the bike will become more regular without Xtandi.
I'll continue with Lucrin monthly injects into arse muscle because it would be dangerous if my balls were able to begin making testosterone. I think it is impossible for that to happen because stopping balls working properly for so long makes them unable to restart. I probably could stop ADT, and balls would not work again. Long ago, my Pca became able to grow just fine without ball-made T.
Pca mutates to be able to grow well without external T supply, and makes its own.
So Lucrin is having no effect I know of. I am altered by being chemically castrated, so I am now a eunuch, with all sexuality exterminated, but that's OK, and I have no partner to please, and at my age, I prefer riding a bicycle for 2 hours than riding a woman for2 hours, bearing in mind that women I should be interested in are all over 65, and have had menopause and lost interest in any males or male activities many years ago. Of course there are a few exceptions, but I have never met one, and most women just cannot like an old man poxed up badly with Pca and likely to die during next year or two.
Anyway, always look on the bright side of life,
Patrick Turner.
thanks...
yeah , I've been getting Lupron shots every 6 months for over 6 yrs now. 5 months ago psa started to rise a little and doc got me on Xtandi . Immediate psa drop suggesting success of the two working in concert , so I'm set for my next Lupron shot april 9 with psa blood draw a week before and I'll see if alls well. Might start blood check quarterly just to watch closer like I did after the prostate removal 7 yrs ago. Like you said the fatigue is overwhelming and I have to drag myself to the gym 3 times a week but I am blessed with life and an ol lady who loves me and a God who takes care of everything else. God bless you brother and the doctors working with you
thanks and god bless you my friend - keep the fight going and u ll win!!!
How do you know if Xtandi has stopped working?
Xtandi worked great
Lupron injection with xtandi
Xtandi while on Chemo is working Well
