I’m doing some research to try and help my brother. 62 with stage 4 prostate cancer. Had a 26 PSA. Is taking the hormone shots every 6 months and completed radiation. Cancer is in his pelvic bone and lymph nodes. Doctor said he has maybe 10 years at best. I’m trying to get him to look at alternative treatments like fenben and ivermectin. I appreciate some of the testimonials that I have read.
Help for my brother: I’m doing some... - Advanced Prostate...
Help for my brother
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HelpForBrother
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Fire his Doctor. I was told 3 years and am now going on year 9 with a new Doctor
That's great news for you. Are you doing anything different besides the typical radiation or chemo treatments? Like fenben or something else?
SOC only, consisting of Lupron, Zytiga and radiation. For last year have started Lynparza. Don't buy in to all the different supposed cures etc. Don't believe in "micromanaging" my disease. Everybody is different I no longer fear dying and am ready when it is my time. Maybe tomorrow maybe 20 years from now, who knows
How are the side effects with the Lynparza ? I see it in my future...someday...Thanks
Not horrible, white and red blood cell counts drop and leads to being winded pretty easily. Wife made me hire a handyman and a landscaper which isn't horrible. Not so bad that it effects me in the gym. We have been experimenting with doses to find the "sweet spot" February will be 14 months
Thanks ! How long do you expect to be on Lynparza /Is there a typical SOC timeframe ? And just curious, how frequently do you get your labs done to manage the white/red counts ??
Lynparza has a median effective range of 11 months if I remember correctly. I am at 13 months. My MO said when Lupron/Zytiga works better than expected as in my case other treatments tend to work better also. Clearly not scientific just anecdotal. Currently I test every 6 weeks
Thank you, I'm in the BRCA2 club also, and expect to be going with a PARP inhibitor in the future...sorry to highjack the thread !
Way too radical. In this fight no one can predict life span.
ya know, the predicting life expectancy is ...? 8 yrs ago I was told 5-7 yrs ... fooled them. Still here, still living my life and enjoying it. They just don't know.
What will happen today ? - who knows. Tomorrow ? - same. Next week, year etc ? - and not just the cancer. All of life
Staying informed, paying attention to symptoms, second opinion - all positive.
Living every day fully engaged and supported with the presence of the people you love is pretty good medicine
Thank you and good luck for a long and healthy life.
DarrylPartner
ask your brother to join this community
I did. I just found it today and shared it with him.
CAUTION : DO NOT FOLLOW VERBATAM THE TREATMENTS OF OTHERS ON THIS FORUM . Everyones' cancer is unique to them . This forum gives you ideas , TO CONSULT WITH A MEDICAL EXPERT ( Urologist , Oncologist Etc. ) BEFORE TRYING .
We are NOT MEDICALLY TRAINED . We are ALL well intentioned , but what worked for some may well be the opposite for others . WE DO NOT KNOW , or are we in a position to know , your brothers complete family medical history . Doctors will not diagnose a patient without seeing the person and reviewing his full medical background and current treatments and medications .
Good luck .
We hold these truths to be self evident! Do you really think men here are using the exact same treatment as another member because it sounds good? I doubt it…… though I do worry a bit about the guys who run the alternative tx path and forego SOC.
Sometimes doctors differ greatly from each other on recommended treatments. Each person had to sort it out, but this forum is a great place to help with that.
You've got that right! When mu journey started, I knew nothing. I did however see 3 MOs before choosing one. 1 of them was totally off base and if I had just seen him and didn't do my research, I would have been screwed.
I agree . That was my point - use this forum to educate yourself with respect to other optional treatments out there and bounce these optionns off your medical experts - use a 2nd or 3rd opinion if need be . Unfortunately I see posts " RECOMMENDING CERTAIN OPTIONS " , your case is the same as mine is the theme . NO EACH CASE IS UNIQUE . Some members will take these posts as the bible -- NOT ME .
Fair enough.
I'm curious : Were you ever offered HDR Brachytherapy or SBRT ?
Thanks .
I just completed 40 rounds of IMRT. Brachytherapy was not offered. This was a new machine the clinic had just started using.
Was it the Cyberknife machine using MRI Guidance ?
I didn't have Cyberknife. It was a Radixact machine, supposedly new.
No one can take the information gained here unless it is something that is off-label and does not require a doctor for access. Re-read your bio where the medically trained "experts" missed your prostate cancer and missed the G 3+4 and stated G6. Doctors mess up and doctors miss some things.
I believe the intent of this group is to bounce ideas around for topics to discuss with your doctor and care team as they have their specific training, biases, experience and financial entanglements. A group discussion provides for a VAST set of experiences and opinions that will hopefully help others not fall into the misses we have all experienced at some point in our journey! It's a very fluid field that changes often.
The 2nd part of your post reinforces my thread . Use this forum to educate yourself with respect to the latest emerging treatments . And seek out a competent practioner in his field , Urology , Radiation etc . to bounce the options off .This often means , through your own self education , finding a different doctor and never taking no for an answer . Exactly the reason I did not take my 1st NEGATIVE Biopsy results as a reason to celebrate -- The result was in conflict with my MRI PI-RADS 5 Score .
I called the shots on my 2nd Biopsy and 2nd and 3rd opinion of the results .
But apart from radiotherapy and injections every 6 months, what other treatment are you having?
It's my brother that has it. I don't think he is doing any other treatment for it. He had his first hormone shot in September and then radiation for a number of days. And I'm pretty sure that's it. He goes in for bloodwork every two months and shots every 6. I've been pushing him to look at fenben and other alternative treatments for a few months, but he kept saying that he would stick with what his oncologist recommended. He finally agreed yesterday to look at other stuff.
In cases similar to your brother's, in addition to radiation and ADT, another drug, Zytiga (abiraterone), should also be taken for two years. Talk to your oncologist about it.
And there are less expensive generic versions of Zytiga, if that is an issue. It works well.
Why are you pushing him toward fenben etc……SOC is advancing every day….
I'm new to researching this and fenben was one of the things that I've read about. I'll try to help him anyway that I can. I've read a lot of positive stuff about different treatments on this site the past 24 hours.
Fen Ben and ivermectin is a great adjunct to soc and def can’t hurt as they are one of the safest drugs around used billions of times w virtually no side effects. If you take them solely sometimes they are not strong enough but then again soc also falls in that category. I’m trying them solely along w radiation and it’s been pretty effective thus far…
Can you fill out your bio ( with your brother's stats) for details of diagnosis etc... would be helpful
I added all that I know.
They told my Dad 2 years, he had 21. He never told us about the 2, but Mom did after I was diagnosed.
My doctor has never given an estimate and I’ve never asked. There are too many variables and each case is too unique to even attempt an estimate.
For me, it’s been over 7 years since I was diagnosed and I’m doing well. I’ve followed SOC - ADT and radiation. Personally I wouldn’t touch any of the alternative treatments. No science behind them.
I was diagnosed at age 55 with a PSA of 103.0. That was 6.5 years ago. Treatment side effects have certainly changed my life but I am healthy and living a happy, productive life.
Your brother needs an oncologist who is very current on the latest science about prostate cancer treatment. He needs to trust his oncologist and follow his / her advice. He should ask about triplet therapy which is recommended for stage 4.
You will read a lot about alternative therapies and ointments but almost all are not based on proven science. Cancer is a deadly disease and needs serious treatment.
The statistics say that 30% will make it 5 years. That is true but many of those patients were quite old when diagnosed and had other issues besides prostate cancer.
I could be wrong, but I’m not sure those statistics are as accurate as they used to be.
One of the things I’ve found with PCa is that often we are working off of very old data.
My MO joked about the rapid treatments changes over the last 5 years and said “ there has never been a better time to be dying of prostate cancer”.
You are correct. I just looked up the National Cancer Institute's current statistics and they now say 36.6%. When I was diagnosed in 2018, it was 28%. The trend is definitely upward. I have yet to find any 10 year survival statistics.
The problem, of course, is that one must use data from patients who were diagnosed and initially treated more than 5 years ago. There continue to be advances made in treatment and I expect the numbers will keep increasing.
I like your MO's sense of humour.
Did you receive chemo with your cancer?
I did chemo shortly after diagnosis. At that time, standard of care was ADT plus either chemo or abirateron. My oncologist recommended chemo. Today the standard of care is both chemo and abiraterone (or enzalutamide, darolutamide) - triplet therapy. I added abiraterone to my ADT about 2.5 years ago.
The initial chemo and ADT really knocked back my cancer. My PSA dropped from 103.0 to 0.017.
My dad was diagnosed late summer and he's on round 3 of 6. It's been a little rough, he recently had an infection and needed to be hospitalized and he's worried he's going to have more with the next 3 rounds. I'm hoping and praying his PSA comes down once he's done in late March.
It's certainly not a fun treatment but it is effective for many patients. My PSA dropped substantially at the beginning and then continued dropping slowly over the course of the first year. I wish your father the best.
I was diagnosed with stage 4 PC at age 71. Four bone mets. Oncologist put me on Lucrin shots every 3 months and Aberaterone/Prenisone daily. That was 2 years ago. I asked then how long I had and she said its is not possible to predict. She said at my age, I was more likely to die of a heart attack or stroke ( heaven forbid) than of the PC. I'm doing okay apart from the usual ADT side effects and my PSA is down from 12 to 0,078 as of yesterday.
It is sad to hear that, but why not consult different doctors in different countries or maybe go abroad. Some countries like Germany and Turkey are so developed in terms of cancer treatment and they habe big hospitals just for cancer or maybe check clinics through Wupdoc, so you will find many options in different countries
Some of us need to eat and pay our rent….jetting to foreign countries for additional tx is not in the cards
Your brother is in mhspc(metastatic hormonesensitive prostate cancer).So(in my opinion and because I have same mhspc)your brother should have/ask/demand triplet therapy:Adt hormone drug(Orgovyx,Firmagon,Lupron..)+ Docetaxel(chemo therapy+ Nubeqa(darolutamide which is ARSI drug).My psa was 2500 in august 2023 and 0,4 in July 2024.(I had triplet therapy).And now I feel great. All the good for you and your brother.❤️🙏
petrig: sorry to hijack. I’m a week into being diagnosed with Mets in my ribs. PSA 0.35. Prostate removed 2015. Radiation and Elegard 2019, PSA undetectable, started slow rise, got PSMA PET Scan. Doctor is only recommending first and second generation HRT. I pushed for chemotherapy he said not done on small volume. I’ve been communicating with PCRI, they said chemotherapy never used for Gleason 4+3, but that HRT usually not strong enough to kill tumors big enough to show up on PET Scan. but I’m getting second opinion to try and get radiation. Thus, is that triplicate therapy?
Apart from the ADT injections that he takes every 6 months, he should be also taking a 2nd-generation-hormone therapy like Zytiga(abiraterone)/Xtandi(enzalutamide)/Erleada(apalutamide) or Nubeqa(darolutamide). That should give him a lot of time.
He may also get his blood checked for genomic testing to know if he has BRCA1/2 or other genomic mutations. In that case he could take Lynparza (olaparib) some time in the future. Lynparza is very toxic. But it's good to know if the patient genomic mutations.
As mrscruffy said, maybe try another doctor.
The radiation was prostate-only or it was whole-pelvis? Meaning if the lymph nodes were also irradiated.
It's new it's scaryFamily and friends want him to fight and cure it....
Cannabis, no sugar,vegan, broccoli, god, fen Ben, ivermectin, magic water, vitamin c infusions, sure there many more cures.
Some cancer sufferers want to hand over their care and follow their doctor's advice to the letter.
Some will march off to the mountains in Mongolia to find help.
All ways will be the best way for the sufferer....
Support your brother, gentle with the advice, early days....
Lots fear.
Best advice is, breath
Get him an account on here and you can both discuss the things you both see from other suffers experiences
Breath, get him a slim folder for all letters and correspondence, keeps it in one place and it can be put away and taken out when needed....
He's gonna be ok
Your gonna be ok
His family gonna be ok with your loving support
You won't find here too much support for fenbendazole and ivermectin,this group is full of knowledge about standard of care,new therapies, trails etc.I do take both for few years now,I'm not cured even not close to be ned,but was stable for few years with low psa,now things are in progress so I'm combining soc with alternatives.
Do your own research and decide if it's good for your brother.
You should consider Next Generation Sequencing (NGS) test. My dad used Foundation One. The test may find genetic mutations that can be targeted with specific medicines and help the patient.
Your brother has a long road ahead of him with SOC medicine. As you progress down this road the fear will lessen and acceptance and calmness with gradually come. That just takes time.
This is a very difficult time for him and the family. We have all been there. It is part of the normal prostrate cancer journey. You and he will get through this. Do not go off the deep end with unscientific treatments.
Hey! I am sorry to hear that your brother is going through this. And it's great to see that you are with him to provide the support and comfort he would need in his journey. Your brother is a strong person to go through all this treatment. And you as family are being on his side.
Medication Options:
1. Lutetium has a range of benefits to improve quality of life with minimum side effects. Please read on Pluvicto (brand name) on their website. Based on your location, you might have insurance available. These are radioactive fusions.
Herbal Options:
1. Extra virgin olive oil rich in polyphenols are helpful. Only use the with really high medicine level
Caregiver Advice:
1. Please keep a close attention on weekly basis to check mouth, urine and other symptoms of discomfort to look for an infection. The goal is to avoid any kind of blisters and indication of infection. If there is any infection found even the slightest amount, please immediately do a CBC blood work to check potassium levels as it causes toxitiy in blood leading to life threatening situations.
2. Please take care of not only physical but practical, psychological, social and spiritual needs of yiur brother along with his fears and reactions towards life.
I wish you the best and many more shared moments fir you family
Well, my thoughts...
Rarely should a member of one's medical team provide a life expectancy. they may base that on "statistics," but keep in mind that statistics are population based, historical...then there are terms such as averages, means, model, median, sampling size, confidence intervals, Bell Curves, standard deviations...So, that is the "science." The art is where does your brother fit based on his clinical data?
This is a heterogeneous cancer, not homogeneous. There is science in the guidelines such as the NCCN, AUA...There are patient centric organizations which provide resources - PCF, PCRI. The art comes in the application of the science to one's own specific clinical data.
A starting point for your brother and you may be to inform yourself of the terms, definitions and guidelines. You (and he) should be familiar with Gleason Score, Grade Group, PSADT, PSAV, what are treatment guidelines - ADT, ARI, Chemotherapy, radiation, Genomic testing...then start understanding the differences in types of radiation treatment, which ADT, which ARI. Doing so supports dialogue with your medical team who like you, are trying to determine the optimal treatment given his clinical data. There is no "right" decision, nor are you likely to gain consensus from a group of experts who comprise his medical team. The good news, a "plethora" of choices, the bad news, paralysis by analysis,,,
My medical team has never said, nor have I asked, "how long!?" I am high risk - GS 8, GG 4, 18 months to BCR, PSADT and PSAV very rapid. Yet, I am 11 years since diagnosis and expect more. I've had four separate treatments, surgery, SRT, triplet, then doublet, Of those 11 years, only three have been on active treatment. Statistics says I should be on continuous treatment though I think that, which one urologist recommended, may have led to castrate resistance.
As others have said, given the clinical data you describe, triplet therapy may have been an "optimal" treatment, more clinical data may help members of this forum with their thoughts though they have been sound.
I have never once gone down the path of "alternative" treatments. I prefer to start with the NCCN guidelines then adjust through discussion with my medical team based on my clinical data and clinical trials that are entering into clinical practice. During my last cycle of treatment, my radiologist, oncologist and I discussed the applicability of clinical trials such as EMBARK and SPORT to our joint decision. In the end, we decided on a treatment decision that was a hybrid of the two.
Much has changed since the binary treatment I had when I was diagnosed in January 2014, surgery or brachytherapy. Granted, some 30k or so die each year of their PCa, a friend just passed, less than a year from his diagnosis, There is hope through medical research that we may be on the cusp of managing this as a chronic disease through individualized medicine.
Your brother is not old, he may have a decade or more left. Then again as I say to my wife, some idiot could run a red light and t-bone me on the way to the grocery store today.
Somewhere around age 50 I had a discussion with my primary care physician during my annual physical.
We talked about growing old:
We agreed it was a "crap shoot," where genetics may come into play, accidents...but there were things we could do to increase the quality and quantity:
Diet
Exercise
Managing stress
Social interactions
Activities
But most important, staying on top of one's health by seeing your medical team for regular checkups, vaccinations and when necessary, seeing specialists for specific issues.
I had Afib, medications didn't work, neither did the cardio version, the cardio ablation did.
I had DVTs and PEs
Cataracts, yep.
High BP, yep.
High cholesterol, yep.
In each case, seeing my medical team to address the issue has "solved" it.
I am grateful for the opportunity to be here, packed a lot of living into that time. Wife and I are planning vacations this year to Sedona, Lake Tahoe with our daughters and either Yellowstone or Door County in September. Heck, if the wife is up to, Niagara Falls in October.
I plan on skiing with friends in Colorado in late February. My sister and I are riding the Garmin Unbound in June.
Yeah, all these health issues despite a "healthy" lifestyle are annoying but, if you had asked a young me about what life would be at 65+, the answer likely would have been one of a nursing home, cane, walker...,
I am grateful for my "health," medical team, medical insurance and my financial ability to live this life.
nccn.org/guidelines/guideli...
auanet.org/guidelines-and-q...
Kevin
Clinical History
I started taking Ivermectin again, I do believe it has helped me. Also cycle in Nitazoxinide and Mebendazole. For me all have been safe, liver kidney functions all good. Not a positive light subject matter for the majority here. My own experience with IVM is that it did lower my psa. My research has backed up that finding. I also take Tudca supplement for a healthy liver support. I wonder how many folks have researched the role of Modified Citris Pectin when under going chemo or radiation.
Hi first doctors doing know how long shying has left to live because Everyone is different, what works for him may not work for me. If he's generally healthy, diet of better foods, zero sugar and processed foods and our drinks, lots of reverse osmosis water, and sunlight, as much as he can stand. Meds only mask out arrest the issue they do not cure. A high positive attitude is a important a breathing because the bodies metabolism is imbalanced this is why proper mineral and vitamin intake is the hallmark of good health. Look at the Chinese, aussies, Japanese, of course Africans, their diets are big on fiber and natural nutrients and minerals. These countries only have big medical issues when they allow the west to influence their diet or culture we all see that. So positive affirmation and meditating also help a lot. Hope this helps cheers.
You might check out Dr Makis. He is an oncology radiologist from Canada.
I believe most who use alternative care also use standard of care. I would never forgo standard of care treatment.
Most in this group are against any alternative options and that's fine, you just won't get a lot of information on alternative care options here. With that being said, this is a wonderful group of people who are so helpful to so many.
Doctor's do not know when someone's time is up. Now if a patient is in multi organ failure then we know the time is near. I work in the medical field I've seen numerous stage 4 cancer patients live 20 plus years. When my husband's first urologist said he had said 6-18 months, I said to him he only has lymph node spread to his mid abdomen I know that is a better prognosis. He said yes that's true. Anyway we fired him. It's now been almost 18 months and you wouldn't even know he has stage 4 PCa. Yesterday we went to see a orthopedic Dr about his arthritis and the Dr couldn't believe he had stage 4 PCa. So live your life and know treatments are advancing everyday. We also do alternative treatments alongside conventional treatments. Make sure your brother is at a NCI designated cancer center. Wishing him and you a great new year!,
that’s with current available treatments…..we have no idea what will be available in the next decade…..im very surprised that the Dr did not add this proviso…..or perhaps he did but it wasn’t processed? Heck….it used to be that they would give you 3 years……. Dont focus too much on predictions…there are always exceptions.
If he does fenben and other alternative things, he should do them in addition to standard treatment (whatever that turns out to be), not instead of standard treatment.
I was told 5 in 2014 and then 18-36 months in Feb 2019. And here I am
That doctor will be dead before your brother. I strongly suggest monthly Hormone shots as a precaution. Minor inconvenience but stronger dose overall. As other say get another doctor. I am in my 10th year now Stage IV radiation on L2 and going strong now at, soon, 77.
Be 100% Positive about the future! That doctor simply gave up.
Dear Help, In 1993 Michael Milken was diagnosed with stage 4 cancer and numbers not much different from your brother. In addition to conventional western medicine treatments available at that time he made these changes to his life: regimented exercise regime, daily meditation to ease stress, plant based diet, Ayurvedic medicine (herbs essentially for combatting tumor growth and boosting the immune system). He is 30 years removed and still cancer free. All make sense lifestyle changes to give your body the best chance to fight the disease.
Greetings Bro,
Where is your brother located (city/state) and where is he being treated ( and Doctor's name(s)).? Keep posting here cause we have lots of information and you'll find camaraderie with members. Try to laugh your asses off (it helps).
Note: if you or your brother do not like your doctor(s) drop him/her and look for a good one (get recommendations here) and if female, make sure she has big tits.............
Good Luck, Good Health and Good Humor.
j-o-h-n
He is in the Charlotte NC area. I don’t know the name of his doctor or treatment center. Sorry that I can’t provide more information. He told me that he would take a look at this site this weekend. He’s in a very good place mentally. He’s not going to let this beat him down.
Charlotte is a nice area (except for the recent floods). We have a few members in that area so you may want to contact them for references in the event your brother or you wish to change docs. Encourage him (and you yourself) to post here. This is a great place.
BTW if his issues beat him down.... I am authorized to visit Charlotte and make him laugh till it hurts. I should let you know I spent a week in Charlotte one day....
Good Luck, Good Health and Good Humor.
j-o-h-n
Hi - it must be a hard last month for your brother and family. How's your brother doing?
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