I am new here. My dad is almost 76 and had his prostate removed in 2009 and radiation in 2010. His psa rose on 2 different occasions...2017 to 36 and 5/2018 to 29 then to 169 in 12/2018 before we were referred to an oncologist. His PSA is now around 300 and just started taking Xtandi today and continuing to take Lupron shots. It is Metastatic to the bone and a few lymphnodes. Anybody with good outcomes with XTANDI??? Ive heard great things from a pharmacist. It is very expensive.
2nd question: Anybody else heard that the essential oil Frankincense destroys cancer cells?
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savingdaddy
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my experience so far with Xtandi...I'm at the same place (except lower PSA). been through radiation, chemo, HIFU, and even Provenge. At the same time I started Provenge (while still on Lupron) I started Xtandi. My PSA went down a few months and now it's going back up. I am scheduled for another Axumin Pet Scan to see what the actually "cancer" looks like...last one looked better than before. So I'm really NOT sure if it's working. Wish I had a more positive spin on it for you. I do hear about people being on it for a couple of years with good results...My good results lasted closer to a couple of months (about 4, actually)
all the best,
John
p.s. it does compound the weakness, fatigue and general malaise that comes with Lupron...but I found that using BIRM (google it on here) actually helped a lot with those side effects.
Gus found some synergy with indomethacin and Xtandi...the two together got him to undetectable....there is a clinical trial going on involving the two I believe....Good luck...
yes, I saw that and I am going to ask my doctor about it on my next visit. If I can't get it from the oncologist...I will try my primary care doctor. I have visits with both soon.
Is it strictly the combination of indo with enza that works or is indo just a good adjuvant on its own....curious. So many conflicting theories on pain killers...ie the labourious parsing through the landmark zytiga/ADT latitide study cited some negativity to those patients previously reliant on analgesics had less promising effects...of course it doesn't say anything about starting pain meds after the treatments starts...where's a boy to turn. I like the fact that repeated resistant strains of the disease can be halted...needless to say....especially when the effects are so good to unblind a studies placebo group...thats a huge statement.
i'd love to see a pole from the groupies as to who has outright survived more than 5 years without a sign or symptom of the disease and how they account for it. maybe chart everyone with self entry data fields including everything in eachother's bags of tricks.
I believe it is take together... can only go with anecdotal now from people that post regarding the combo and success
I suggested to our moderator of having a separate area for those undergoing clinical trials to post success/failure in treatment with an idea that people who were losing the fight may get a chance to sign up....of course, one never knows if what works for one will work for another, but that might be ameliorated by participants listing their gene mutations--match apples to apples sort of...we will see if this develops...with the beast, there are never guarantees....
“--match apples to apples” ....crowdsourcing at its finest...I have to believe there may be just these sorts of database medical templates freely available....after just a few months of treatment I’m seeing big winners emerging in the anecdotals....imagine what’s being sublimely masked just as what we learned from the Swedish Dukarol retrospective findings.
To me, the addition just makes sense....people die here almost daily... a clinical trials section where members tell the trial they are in, how they have done so far--pain, labs, functionality, etc and their cancer gene mapping--it could delay a death or save a life...others with similar gene mapping could look at joining or not, but once again--the caveat--the beast never treats each person the same...but making it close to apples to apples may help...on Darryl and the board at this point...the legalities may outweigh everything....
As for Xtandi, see what I replied to Greatjohn's post to you here-- in response--one member used indomethacin with Xtandi and did well.....there is a clinical trial for this also I believe...od course, you should run it by your MD---.best of luck in saving your father... He is blessed to have a child like you.... God bless you both
Hi, after Enza failed I moved onto clinical trial for PARP inhibitor (niraparib). Although germline DNA did not show any anomalies in BRCA2 gene there is a bi-allele deletion of BRCA2 in somatic DNA which makes me a perfect candidate for PARP inhibitor therapy. Sadly after 2 months of niraparib, PSA went from 60 to 400! So this was discontinued early on Jan. I have now started cabazitaxal (have previously used and became resistant to docetaxal). Too early to tell if this is working.
Hope that Enza is doing something good for your Dad.
I am nearly the same age as your dad (will be 74 in September) and I have had a great response to Xtandi. I started taking it in September 2017 and my PSA continues (touch wood) to be undetectable, less than 0.008. As pointed out by many others, everyone is different so what works with one person may not work with another.
I started at age 65 with a PSA of 5,006 a little over 5 years ago in late 2013. Lupron/Zometa took that down to 1.0, and worked well for almost 2 years. I did some Provenge with a PSA rising into the 80s, then added Xtandi about 2 years and 2 months ago with a PSA of 95.0. PSA went back down to 1.2 and stayed below 2.2 for most of 2 years. Most recent PSA was 3.1. Probably still working well enough to defer new comparison scans or a treatment change. A consulting specialist says to start thinking about it again when PSA rises into the 5-10 range. My main side effect is general background fatigue, along with the other usual stuff from having very low testosterone for a little over 5 years on Lupron.
Hi have been on Xtandi for 2 years and PSA is undetectable -it has been 13 years since original diagnosis PSA 24 and Gleason 4+4 so it is very effective for me
Been taking it for about three and a half years, PSA remains undetectable, SE’s include fatigue, brain fog, joint pain. I plan on running the wheels off it which I hope won’t be for a long time.
I’ve been on XTandi since May of last year. Good results so far. .00 PSA But also going vegetarian, no sugar, walking and lots of supplements. Also taking a Lupron every 3 months.
Started with 59.9 PSA. After 8 cycles chemo started xtandi. After 17 months xtandi psa now 0.2 (has stayed at 0.2 last 6 months in a row). Lupron and xgeva the whole time. Extensive bone mets and several lymph node mets. Lymph nodes now "normal", bone mets now "subtle". Attribute that to chemo. Alkaline Phosphatese from over 200 to 63 this month. Minor brain fog, but is that lupron or xtandi? Or both? No huge fatigue issue but 68 and retired so not a big issue. Take at 8pm and become drowsy an hour to an hour and a half later. Only lasts a little while and doesn't seem to help with sleep. Celebrex recommended by some if on xgeva. Really helps with aching back or joints. Just watch blood pressure. Good luck.
I have been on Xtandi for 3 months, and so far so good with PSA at .1 I did have to lower the dose from 4 pills a day to 3 because 4 gave me a constant headache. He will need to watch his blood pressure closely wile on it because high BP can be a problem..... fatigue is the only other issue, but that comes with most all ADT treatments
THE FOLLOWING IS FROM A POST 10 MONTHS AGO BY OUR ILLUSTRIOUS EXPERT ON ANTIOXIDANTS (ALSO A SO SO FISHERMAN) MR. NALAKRATS.
This is reprinted without Mr. Nalakrats permission.
Please note that Frankincense is mentioned about 3/4 of the way down in this post.
There has been an ongoing controversy about antioxidants, and if they are good or bad for you. Patrick has added his voice thru some research papers. The tug of war in this is about the [ROS] and the Removal Of Free Radicals, which we sometimes call Free Radical Scavenging. All of us have both antioxidants and free radicals present in our bodies, at all times. Some antioxidants like Glutathione[Previously Run In Clinical Trials], are made in our bodies, while we MUST get others from diets by eating HIGH antioxidant food that DOUBLES as {Anti-Inflammatory} foods. Our Bodies also produce free radicals, as byproducts of cellular reactions[Both good ones and Bad ones]. As an aside, it has been shown that on an individual basis, that the higher one's Anti-Inflammatory Measurements the Higher one's PSA. And visa versa. I.E. the liver produces and uses free radicals to detoxify the body, while white blood cells send free radicals to destroy bacteria and damaged cells. When certain types of oxygen molecules are allowed to travel freely in the body, they cause what is known as oxidative damage, which is the formation of Free Radicals. When Antioxidant levels in the body are LOWER than that of Free Radicals due to poor nutrition, toxic exposure or other oxidative factors wreaks havoc in the body. The Effect??? Accelerated aging, damaged or mutated cells, broken down tissue, the activation of harmful genes[Like In Cancer], within DNA, and an overloaded Immune System. Homeopaths say,"because we today are exposed to very high rates of oxidative stress at ever younger ages, we need the POWER of antioxidants, which means we need to consume high antioxidant foods. As we age, the body's ability to make its own antioxidants declines, so that the balance of free radicals and antioxidants starts favoring Free Radicals, and the ability to scavenge free radicals Diminishes. What Are Antioxidants
One definition is any substance that inhibits oxidation. To be an oxidizing agent or a free radical does not require the oxygen atom with an out of balance [-] negative valence. So you all take oxygen as the main culprit off to the side. There are many many molecules that are unbalanced---and the big word here is Unbalanced Electrically, that are very damaging Free Radicals. All free radicals do not come under the terminology of [ROS]. Those that do like Superoxide, Peroxide, and singlet Oxygen do. In Chemistry we define Free Radical reaction with Antioxidants as Oxidation Reduction Reactions, and is the transfer or combining of an electrically unbalanced molecule[Such as any free radical], to create Neutrality. Antioxidants include dozens of foods, herbs, and supplements. to make the point again, antioxidants can inhibit unwanted oxidation, or reactions promoted by oxygen, peroxides, and/or NON CONTAINING OXYGEN FREE RADICALS, THAT ARE ELECTRICALLY UNBALANCED. The American Academy Of Naturopathic Medicine does suggest from research, that when it comes to longevity and overall health, the benefits of consuming antioxidants foods, herbs, teas and supplements are: * Healthier glowing skin
* Reduced Cancer Risk
* Support of Detoxification
* Longer Life Span
* Protection against Heart, and Stroke Disease
* Reduction of Dementia
* Prevention of Macular Degeneration
* As food additives to prevent spoilage.
Antioxidants in your diet offer much needed help to counter damage done by sun exposure, poor diet, smoking, drug use, medications, poisons[Toxicity], chemical exposure[Why we do not use antioxidants when taking Chemo], high amount of stress, and natural factors that increase that increase the risk of age related problems. They protect healthy cells while halting growth of cancerous cells. The argument about antioxidants and stopping cancer cell growth--would be another discussion, at another time---using Supplemental Antioxidants at high dose levels, so they act as drugs, cannot by me be delineated--as to do this anyone should be under the care of a Naturopath--board certified, and one also with a MD.
Before defining certain Foods Herbs and Supplements--we need to discuss the ORAC SCORE. This Score was devised by The National Institute of Aging. It is basically the ability of a food or herb or supplement to absorb or cancel out free radicals. Tests are done in Test Tubes using 100 grams of material. All we need to know is the higher the number the more antioxidant capability a food or herb or supplement has. Supplements are hard to measure---as we have many manufacturers, with different extraction processes, as we found out with New Chapter, and also different sourcing. I.E Turmeric from India does not have the same antioxidant ORAC SCORE as Turmeric from China.
High Antioxidant Food List[W/ORAC SCORE]
* Dark Chocolate---21,000
* Elderberries---15,000
* Pecans---18,000
* Wild Blueberries--- 9,600
* Boiled Artichokes---9,400
* Cranberries---9,000
* Kidney Beans---8,600
* Blackberries---6,000
* Cilantro---5,200
* Goji Berries---4,300
Other Antioxidant Rich Foods are Tomatoes, Carrots, Pumpkin Seeds, Sweet Potato, Pomegranates, Strawberries[For its Fisetin], Kale, Broccoli, Red Grapes, Red Wine[For Patrick]
Top Herbs[W/ORAC SCORE]
* Clove 314,000
* Cinnamon 267,000
* Oregano 159,000
* Turmeric 102,000
* Cocoa 81,000
* Cumin 74,000
* Parsley Dried 74,000
* Basil 67,000
* Ginger 29,000
* Thyme 27,000
Others are Garlic, Cayenne Pepper, and Green Tea.
Top Antioxidant Supplements[NO SCORES--we do not have standards}
* Glutathione
* Quercetin
* Lutein
* Vit C[Use Liposomal]
* Resveratrol
* Astaxanthin
* Selenium
Others are Lavender Oil, NAC, Catalase[which destroys H2O2].Chlorophyll, and one of my favorites from the bible---Frankincense Essential Oil. I use 5-Loxin which is the identified Antioxidant Molecule in Frankincense. If it was good enough for Jesus, it is good enough for me.
I know as we age those antioxidants made by the body decrease in production. So I feel obligated to supply what is not being made anymore, by supplementation. As to use of these materials as drugs in high dosage, I already said I would not discuss. So is supplementation with Antioxidants a Yes or a No. How about a maybe. It has been clearly shown in the literature and in studies and testimonials, that Antioxidants can treat cancer. I did not say cure! Breast, colon, and prostate cancers can react positively in some ways---if for nothing more than making the host more healthy to fight the disease.
The use of supplementation would be up to the individual to make their own decision. At least we know that there other forms of Free Radicals that are not Oxygen Based, and we had a bit of Chemistry in terms of Oxidation Reduction Reactions as what happens when the Free Radical meets the Antioxidant.
And to end IMO I consider the Cancer Cell Itself to be a Free Radical. These abnormal cells have a positive side and a negative side in terms of electron activity. Read my post on Chelation and Copper, that I did many many months ago---kind of a reverse antioxidant activity--where we went after the, Copper, Cu++ instead of a O[-]. But still a oxidation reduction reaction, using EDTA.
I do not know if I settled any arguments--but I have been asked by many to write on the subject---so I have.
Nalakrats
Note to Nal, if I wasn't supposed to re-print this then I'll pick up the check next time that we go to lunch.
to savingdaddy:
BTW where are you located, where is he being treated, and doctor(s) also? This info helps us help you.
I will have to read this on my desktop..only have my phone right now. Thank you so so much! Located in NC and my Dad is being treated at Duke. His oncologist is Dr. Daniel George. He has only been on Xtandi for 2 days now. His PSA DROPPED 46 points since January 16th. FNP said that was unusual. He received another Lupron shot today. Other labs haven’t really changed except for A better hemoglobin level today. And thank you to Mr. Nalakrats!
I'm Gleason 31, stage 4, M1, doubling 5 months. I had 3 bone mets. I was on Lupron 2.5 years then added Xtandi. I'm 7 years out. PSA .002, scans are good. I do have side effects. I wish you get similar results.
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Looks great, but think Xtandi is coming to an end. 
Xtandi for Third Time
Xtandi, how long could it take to work?
Xtandi and Increasing PSA
