Xtandi and Orgovyx

[lakeerie]

recently started both Orgo and Xtandi for stage 4 Had previous HD brachy and EBRT of prostate which went well had cat and bone scans after that showed nothing except 4 bone mets 2 in spine and 2 in lower spin and hip These probably escaped prior to my above treatments as the treated area looks good as do organs etc. so had radiation done on those 4 bandits so in theory the cancer should all be killed after that My quesrion is has anybody reduced the 4 pill xtandi to say 3 pills as i find my head fog etc is hard on me when taking the full normal dose of these 2 drugs My psa i below .2 and testost is below .4 thanks I am 75 and less than a year into all this my prostate cancer was localized when received initial bracky etc

[Tinkudi]

hello,

Dad is 83 and he takes 3 pills of the Xtandi. One MO had said to go with 2 , considering his age and another MO said to do all 4 so chose the midway path and settled at 3.

Had read some links on this site which suggested 3 were just as effective.

[lakeerie in reply to Tinkudi]

Thankyou that is encouraging and we all need some hope in these matters

[Tinkudi in reply to lakeerie]

Best wishes for you 😊🤗

[alevtigrii in reply to Tinkudi]

Enzalutamide immediately halted the doubling of my PSA level and has, in 3+ months, reduced the PSA from approximately 400 to 5.7! I am feeling MUCH better and functioning MUCH more normally.

[Tall_Allen]

"so in theory the cancer should all be killed after that " Sadly, it doesn't work like that. When there are metastases in bones that you can see, there are many more that you can't see, just as you couldn't see those metastases when you had your prostate radiation.

"My question is has anybody reduced the 4 pill xtandi to say 3 pills as i find my head fog etc is hard on me " 3 pills is less effective than 4 pills.

[lakeerie in reply to Tall_Allen]

thankyou for your info. I agree that there could be more mets but is also possible there aren t In my case it was about 6 months for the mets to establish themselves before I started ADT and had a scan when they were found They were then radiated with SBRT Twenty years ago I had colon cancer which was cut out Five years later only 1 mestasis appeared in my lung. Half my lung was removed in 2009 which was 5 years after colon cancer That was the end of it no more colon cancer or colon cancer mets This prostate cancer is not related It is possible to kill cancer and the mets. you never are sure. I think all my mets had a 6 mo period to take root from when i had my prostate invaded with needles which released the mets, I am on Orgovyx and Xtandi in case there are more as you have said. I can t handle both and need to reduce or stop Xtandi. In a year or so will look for more mets. Thankyou so much

[Tall_Allen in reply to lakeerie]

" but is also possible there aren't" That is not how prostate cancer (or breast cancer or lung cancer) works, but other cancers may be different. It is impossible that there are no microscopic metastases. When cancer cells leave the prostate, there are thousands of them. They then spread from metastases to form new metastases. It takes a while until they change the microenvironment (mainly in lymph nodes and bones) so that they can grow big enough to become visible on any type of imaging. Some believe there is an "oligometastatic" stage in which with radiation to visible metastases, the immune system can get rid of the micrometastases. There are clinical trial ongoing to prove or disprove that. My opinion is that lacking proof, why not radiate them if safe?

[lakeerie in reply to Tall_Allen]

thankyou I agree and have radiated all that have been found HD bracky and EBRT of prostate then SBRT of bone mets Now taking Orgovyx and Xtandi for those other culprits but might have to just rely on Orgo as can t tolerate both so my quesrion was has anybody just taken a half dose 4 pills of xtandi as I am in remission according to my radiation and medical oncologists Thanks

[Tall_Allen in reply to lakeerie]

When Xtandi+ADT was proven to increase survival better than ADT-alone, both groups were "in remission" at first. But the group that got Xtandi+ADT survived longer.

[lakeerie in reply to Tall_Allen]

Thankyou. My plan is to take both but my body is having trouble tolerating all that medicine. I may have torely on orgovyk alone. stopped xtandi today after 3 days of intolerable side effects and will reasess in a week to make sure what caused side effects I may have to just take orgo alone Take care

[john510185 in reply to lakeerie]

Do you exercise? I've been on Prostap (leuprolide) and Xtandi for almost three years. I go to the gym four times a week (two lots of HIIT cycling, one lot of upper body resistance, one lot of lower body resistance). My experience is of course anecdotal, but my side effects are minimal. Mild hot flushes and restless legs, sometimes difficulty remembering certain things.

I can't prove it of course, but I think the exercise mitigates the side effects. And I feel both physically mentally strong. I've actually palpably and visually gained muscle mass. Latest blood test shows all measures within range, including PSA at 0.044 (761 at diagnosis). I took part in the STAMINA trial, which was what got me into the gym.

[lakeerie in reply to john510185]

Thankyou I will try and exercize more I am glad you are doing well

[john510185 in reply to lakeerie]

Thanks! I'm pretty sure you'll feel better for it. If you need any more detail about my regime, please give me a shout.

Cheers

John 😁

[lakeerie in reply to john510185]

thankyou

[Iamat]

I change from Xtanti (enzalutamide) to Nubeca (Doralutamide) for this raison.

[lakeerie in reply to Iamat]

Thankyou I will look into that drug

[rick8637]

I changed from xtandi to nubeqa after a year of slow but steady psa decline. Once on nubeqa PSA began to increase slowly for a year before I threw in the towel . SEs were more tolerable tho. The entire time I was taking orgovyx. Now on elegard,zytiga,and lymparza PSA is finally dropping again. I pray it continues

[lakeerie in reply to rick8637]

Thankyou I hope you do well

[Rolphs]

I have been on Xtandi and Orgovix for almost 4 years. Fatigue and some brain fog is there but manageable. I have rigorous exercise program of resistance training, cardio, yoga and HIT. I also take Xtandi before bed which lessens daytime fatigue. Not everyone can do exercise programs but I am sure they mitigate the ADT side effects for me.

Good Luck 🍀

[lakeerie in reply to Rolphs]

thanks glad to hear orgo and xtandi do work if can handle side effects

[whatthef]

Good morning lakeerie, I just recently switched to 1 pill Orgovyx 120mg and 2 pills Xtandi 160mg. I take all 3 pills at 9 each night prior to bedtime. I have some of the usual side effects, with the hot flashes being the most troublesome, due to the frequent interruption every 1-2 hours thru the night. I have some restless leg syndrome. In the mornings, I am greeted with a little brain fog that seems to improve as my day picks up. I walk 3-5 miles daily at the YMCA M-F So to answer your question, AbsolutlyYES ,I believe you should discuss a reduction with your prescriber. My recent (last week) PSA is 0.01 and my Testosterone is 15. The previous months was a PSA of 4.51 and Testosterone at 432! Fyi, I became resistant to Lupron and or Eligard hence the change to Orgovyx and Xtandi....hope this is helpfulul.

[lakeerie in reply to whatthef]

thanks very helpful I take orgovyx and started 4 pills of xtandi and got headaches and diarrea Plan on also reducing to 2 pills to see if any better otherwise will look into nubeqa

[Rocco4590]

Hi,

I was stage 3 and had the same side effects. I got an ok from my MO to reduce to 3 Xtandi, then 2, Worked for me, before radiation my PSA was undetectable.

[lakeerie in reply to Rocco4590]

thanks I might look into doing that take care

[FastingLife]

How the heck did it metastasize if "my prostate cancer was localized when received initial bracky"? Did you not have a PSMA-Pet Scan before the bracky? I'm wondering if you were misdiagnosed? Have you considered theranostics? Theranostics combines radionuclide imaging and radiation therapy which targets specific biological pathways. I have an appointment March 31st with BAMF in Grand Rapids, Michigan. They use theranostics for metastatic with great success. Also, I'd like to share some information that might be helpful. A research scientist/professor named Thomas Seyfried has a protocol which involves starving cancer of it's 2 fuels; glucose & glutamine. The dysfunctional cancer cells have reverted to fermentation...they can no longer use oxygen AND they can't use ketones. Our healthy cells thrive on ketones. Seyfried is blitzing various health-related YouTube channels with interviews explaining his protocol & success stories. Guy Tenenbaum applied Seyfried's protocol (stage 4 metastatic prostate cancer) with great success (look his name up on YouTube). Pablo Kelly lived over 10 years with glioblastoma...brain tumor. Then, do a search for Dr. Makis' fenbendazole & ivermectin protocol that has many success stories. You'll also find Joe Tippens' miraculous comeback from stage 4... he heard about fenbendazole getting rid of cancer in animals and so he started taking it... it eliminated his cancer! So, there are many very hopeful things being applied RIGHT NOW that don't involve the big money monoliths of $Big Pharma & Big Health"care". If they can't make tons of money, they don't want it. I am applying a combination of the above protocols.

lakemichigan

[lakeerie in reply to FastingLife]

thanks for your info yes i had scans before bracky but themets were microscopic and escaped fro the prostate during biopsy we think so they got away before the bracky and ebrt and were too small to detect until 6 months later with fpllow up scans we then did sbrt radiation on those 4 bone mets and everything looks clear and am taking adt and xtandi just in case there are more

[FastingLife in reply to lakeerie]

"escaped from the prostate during biopsy" When I asked the Urologist if there was a possibility of cancer cells escaping during the biopsy, he replied "No, that's not a possibility with prostate cancer". I didn't believe him... why would a prostate biopsy be any different than any other organ biopsy?? So, I believe that they lie to us.

[lakeerie in reply to FastingLife]

yes there is no doubt that poking holes in a prostate full of cancer will result in the escape of some cancer Thanks

[mababa]

lakeerie, I think Xtandi is an arpi, but may have different SEs than the Zytiga (abiraterone) I’m taking. I’m taking orgo and Zytiga and am struggling with the full dose of the Z, 1000 mg. I’ve managed the 500mg dose until Feb, but the full dose packs a wallop. Much stronger brain fog and lethargy/fatigue and nausea. I’m now trying to split the dose between am/pm. Jury is out. I’m supposed to go on a vacation soon and I’ve already decided to go back on the half dose for the duration. Good luck.

[lakeerie in reply to mababa]

Thanks some of us are more sensitive to all these drugs I am dropping xtandi and staying on Orgovyx It wasn t long ago that just taking 1 medicine like Orgovyx or its predeceasor drugs was standard of care and worked well I think many doctors with good intentions have jumped on the band wagon of prescribing a second drug to protect themselves

[mababa in reply to lakeerie]

The basis of my regimen is the Stampede Trials. Don’t have a link to it, but it explains the couplet approach to treating my level of PCa. For people N1M0, with localized Mets, it was shown that adding an arpi to ADT (post RT) improved outcomes. The point being that there is a method to the madness.

[lakeerie in reply to mababa]

thanks i will kook rhat up

[Explorer08]

I've been taking Orgovyx for about three years and have done well on it. A few side effects that are minor but exercise seems to help a LOT. I added in Xtandi last year and was on it, full dose, for about six months. The side effects were HORRENDOUS - - I could barely function on most days so I stopped for three months or so, restarting in late January at half dose. Still, the side effects were quite bad. So, I am off Xtandi until my next MO appointment but still taking Orgovyx. I do feel so much better on the Orgovyx alone. I know every man is different and reacts differently but, for me, Xtandi made me feel like I was slowly dying.

[lakeerie in reply to Explorer08]

EXACTLY Thanks so much I feel the same and just stopped xtandi so will know in a week or so how much better I will feel I guess were are not alone !

[Explorer08]

my MO told me it takes a few weeks to feel better after stopping Xtandi. Good luck!

[lakeerie in reply to Explorer08]

thanks for the info