Next steps after Xtandi and Zytiga - Advanced Prostate...

Advanced Prostate Cancer

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Next steps after Xtandi and Zytiga

tomtom9148 profile image
14 Replies

I was diagnosed with mPC in May of 2016 at 59 years old. I’ve had Docetaxel, Lupron, Xtandi, Zometa, and now Zytiga. My PSA initially decreased with Xtandi in November of 2017, but after 2 years it rose, so I switched to Zytiga in October of 2019. Continued to rise, from 1.6 to 2.1 in one month. My PET scan showed some growth in new areas, so it has me concerned. My oncologist, Dr Menter of Kaiser Lone Tree Colorado called tonight, late on a Friday to give me 4 options. 1: Stay on Zytiga and watch; 2: switch back to Xtandi and look for improvement; 3: Do 2 rounds of taxotere. 4: start Jevtana; 5: look for clinical trials at CU Heath Center. Do you guys have any suggestions? I am starting a new food regimen to avoid cancer growing foods, hoping not too little, too late

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Tall_Allen profile image
Tall_Allen

Switch from prednisone to dexamethasone to get some extra time on Zytiga. Then docetaxel and Provenge. If you have bone metastases and no visceral metastases, Xofigo is a good choice too. I'm not sure what a cancer growing food would be, but if it gives you a better sense of control, go for it.

boompah profile image
boompah in reply to Tall_Allen

The International Agency for Research on Cancer has a lot of information on cancer causing/ cancer feeding foods. Are they meaningful in your case? Who knows... Based on information found there, I stopped eating red meats, dairy, and try like crazy to minimize my sugar intake.

Tall_Allen profile image
Tall_Allen in reply to boompah

The research is VERY weak. What applies to one kind of cancer, does not apply to others. Be suspicious of websites that make unfounded claims.

Magnus1964 profile image
Magnus1964

It's never too late to a vegetarian diet and a healthy lifestyle.

tallguy2 profile image
tallguy2

Your history suggests that options 4 and 5 might be right for you. Tall_Allen has a blog with one possible sequence of treatments...and Jevtana is likely next after Zytiga fails.

Brackenridge profile image
Brackenridge in reply to tallguy2

Where is this blog?

tallguy2 profile image
tallguy2 in reply to Brackenridge

pcnrv.blogspot.com/2019/12/...

Brackenridge profile image
Brackenridge in reply to tallguy2

Thank you!!!

snoraste profile image
snoraste

You have some legwork to do. I’d do a genomic profiling first and foremost (if you haven’t done already). That may open a few other options for you. Also talk to your MO about LU177/AC225 clinical trials (Allen’s website is quite informative).

BAT is also a consideration as Nal suggested.

There are also trials specifically trying to address the AR-V7 issue. Again, worth discussing with MO.

You need a bit more info about your condition.

Brackenridge profile image
Brackenridge in reply to snoraste

What is the address of Allen's website?

Healthwarrior profile image
Healthwarrior

I concur with Snoraste’s suggestions to explore explore the Lu117. And do that before doing the AC225/Lu117 mix. In Munich, Germany where the treatments were deceloped and there has been the most experience they the find little difference in outcome. Please note everyone that the latest trials in South Africa with chemo naive advanced prostate cancer patients showed a 29% complete remission rate. That is amazing . The evidence suggest that chemo naive patients respond best - presumably because their immune system is intact. You will need to do a PSMA scan first to see the expression of the receptors but it is rare not to have the receptor sites.

BAT is something I want to do and I have been corresponding with John Hopkins. There now in phase three trials and they have worked out why it works to some degree. They are making real progress. Any one out there done BAT?

Immunotherapies are being trialed which look quite interesting. I am also exploring oncolytical viruses and oncopheresis.

Off label drugs such as mebendazonle, NSAIDs, dypiridamole, Ivermectin, Niclosimade and LDN (Low dose Naltroxone) are pretty amazing and they attack the tumour and the cancer stem cells (the latter is the most important thing to do).

Other product like Avastatins (or red rice yeast if you can’t tolerate that), Berberine and Metformin block nutrition to the tumours and are very effective.

High dose melatonin is pretty spectacular and acts in seven different ways on cancer. And I mean high dose 4 x 60mg per day. And no there are absolutely no negative side effects. Zero. If you use the pure powder.

I am a great fan of high dose IP6. Helps coherence by helping cells communicate better, promotes differentiate in the tumour (stops cell recruitment) and so stops metastatic spread and tumour growth. Also has some strong apoptotic effects. The research done over 30 years is frankly mesmerising. Would be nice to have had more human trials but these are costly and there is is no money to be made in IP6. I would strongly recommend trialing this for three months - gives you so much energy too!

Cannabis, high dose tumeric, vit C IV, hyperthermia, exercise, hydrogen therapy,

Oxygen therapy, light therapy....

Diet and stress management are massively important. As is emotional therapy.

I am sorry, am I going on too much? I am working with a charity on the UK and we are putting together a series of protocols by interviewing various experts in the field.

All work in progress but there SO MUCH we can all do

Max135 profile image
Max135 in reply to Healthwarrior

Healthwarrior

first things first! the warrior in your name I love and the fact that we all need to have on an individual bases a bit a of warrior built in or cultivate the warrior inside. Can I ask which charity you are working with? Your post has me interested in following you....

JLS1 profile image
JLS1 in reply to Healthwarrior

Thank you for sharing all of this encouraging information!! My husband is currently having bone marrow failure after his 4th Xofigo injection. He's had 2 RBC transfusions so far, and no sign yet his marrow is recovering. His last, 4th Xofigo injection was Dec 5th, so if I'm understanding correctly, we're still in the 6 - 8 week window that the Xofigo web site says it may take for bone marrow to recover. (I called the Co and they offer no other info, GRR!). Our oncologist however says there's a 95% chance it's cancer in his bone marrow that's causing the failure, and only 5% chance it's the Xofigo. Feels like MO is throwing in the towel!! Quite a shock, as we were totally NOT expecting this, at least not yet!

I should note that my husband (diagnosed St4 w/ mets to spine in Feb 2017) has had other treatments that depressed his bone marrow, so maybe that puts more credit to the failure caused by treatments?? .....6 Docetaxel infusions in 2017, then 10 RT's to his L1 - L4 spine Jan 2018, immediately followed with Jevtana/Carboplatin chemo due to mets in liver, one 'dose', which caused his blood counts to plummet - almost identical blood counts as they are now - VERY scary!! This was 2 years ago. Dr,. then put him on Lynparza (husband showed somatic BRCA), but PSA kept going up, so he later added Zytiga + prednisone, and added Xgeva and that worked well for 1-1/2 years!! Life was close to normal!! Last summer PSA started going up, so Dr. switched steroids from prednisone to dexamethasone and stopped Lynparza in preparation for Xofigo. Dr, now says NOTHING more he can do!

I've read of others who have taken a long time for bone marrow to recover - months, with transfusions. I wonder how likely this is? Can't find much info on this in my searches. Also wonder if my husband can try switching to Xtandi. I read of a couple others who did that, Xtandi + Xgeva, and that got their bone marrow working. I wonder if BAT may be an option??

Appreciate any thoughts you may have!

boompah profile image
boompah

See my reply to Tall_Allen above for source for info on foods and cancer.

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