About me

[Phoenixrising69]

I am 50 diagnosed April 2020 advanced metastatic prostate cancer am currently on xtandy take THC and cbd oil living a semi normal life at moment

[Magnus1964]

Welcome, happy to see you found us, even if you wish you didn't have to be here.

[Duan1234 in reply to Magnus1964]

Many thanks Magnus

[Chugach]

There are a few of us younger men on this forum. I was diagnosed at 46 and now 51. Hammer this shit hard straight away and don’t mess around with unproven things like CBD or THC as something to rely on. They may be harmless or helpful but not proven in science. Hit it hard - get a medical oncologist and a radiation oncologist on your team. Stay strong brother

[Marcev]

I was diagnosed at 50 . That was last July 2020. Welcome aboard!

[Hidden in reply to Marcev]

I was 53, now 60 . Keep rockin and love life.

[EasyE]

Hi, I was diagnosed in March of 2020 at 58.... I agree with Chugach... hit it hard. Don’t mess around.

[kapakahi]

I've never seen an explanation of why PCa is so much more dangerous and aggressive in men in their 40s and 50s, but it is, that's the hard, scary truth, you can read about it here way too often, and that's why guys here are telling you to not play nice with it, to go after it with everything you've got and don't let up - they really know what they're talking about and it's the best advice you'll ever get.

[45yrsDenmark]

I was diagnosed 16months ago at the age of 45 with aggressive metastized PCa. Hit hard and early is my advice. Also, get a gene test. I have a mutation in my BRCA2 gene... this could most likely be the reason I got it this young and when I get castrate resistant I can get PARP-inhibitor treatment for that.. hang in there!!

[Duan1234 in reply to 45yrsDenmark]

Hi how's your treatment going at moment... I was diagnosed with advanced metastatic prostate cancer in 2019..i see you had a mutation.. How do you go about checking for mutations... Many thanks David Sharpe

[45yrsDenmark in reply to Duan1234]

I was diagnosed 29th November 2019, PSA 88 and mets to 3 bones in pelvis, 1 rib, lymph nodes etc. I got immediately on Eligard (=lupron) and Zytiga (cf. the Lattitude Study) + a lot of radiation efter 3 months-10 months. My PSA has been un-detectable (<0.10) since October 2020 and my mets are now almost gone. Only slight traces of PCa in prostate, one lymph node and a rib left (by using PSMA PET/CT and NaF-CT scanning). So I am doing pretty good wrt. the PCa itself. Now I "only" struggle with the things you don't die of; e.g. Side Effecs like impotence, severe urinating problems, penis shrunk to nothing, no libido at all, hot flashes, all chest and arm pit hair is gone, bald spot on top of head is now almost covered in hair :-), only shave once a week, very tired.. have given op on running since I cannot breathe (used to run 10km in 52mins before my treatment, now I can hardly run 1km).. My blod percent is low (fell with 20% almost immediately after castration), and my B-Erythrocyts (hematocrit value) is below lower limit.. tirednes, amnesia etc.. So yes.. The beast is in control but I am not the man I used to be..Wrt gene testing.. It was not easy since here in Denmark it is not a standard thing the do, so I had to change hospital. We dont have private hospitals in Denmark dealing with cancer - it's under a social care system where you pay over taxes - but it also means, that you cannot just pay for a treatment in DK... then you would need to go abroad.. Therefore I also had to go abroad to Helsinki, Finland to get som more radiation and pay for it (even though I already paid over taxes in Denmark, but they wouldn't give it to me due to lack of evidence). Denmark is very conservative when it comes to approving new things, so yes.. But to have tested those common genes that could have som impact on PCa (think it is less than 10 genes) is not very expensive.. However, PARP-inhibitors (e.g Oliparib), which have shown to have some positive impacts on holding down the PCa when you have e.g. BRCA-mutations, are still not approved when you are castration-sensitive as I am, so not a possible way for me yet.

However, if you have metastases I would really recommend to get castration treatment (e.g. lupron) e.g. with either chemo (docetaxel) or Zytiga (I get the latter = the Lattitude study) and also some radiation.. So you hit it hard and systematically early... If you go under the category "oligo-mets" on diagnosis, then there are suggestions, that say that you might be closer to a "cure"... I don't really think we should still rely on that, but it could be, that there is this intermediate situation, were you should go for a curative approach rather then only have the ambition to prolong life when diagnosed with oligo-mets.

As for me, I am now 46, my kids are now 5, 9 and 11, wife 44 and the entire life ahead of us, but having long-term goals and plans for life kinda changed from one second to the other. So it's tough..

All the best !!!

/ Jesper

[Hidden in reply to 45yrsDenmark]

Pluck the day! You’ve been through hell and back . But , you are much loved and needed. 5-9-11-44 amazing family brother. Peace and love to the family . 🙏

[Chugach in reply to 45yrsDenmark]

Hey brother- let’s keep in touch, we are in the same shitty boat. Young families and all. I was diagnosed at 46 (on my birthday) stay strong

[45yrsDenmark in reply to Chugach]

Yup, will follow you too.. There is also a sister-site to this one for youngsters with PCa under 60... Trying to have that one coming up running

[Chugach in reply to 45yrsDenmark]

I post to that too

[Hidden in reply to 45yrsDenmark]

I didn’t know about the youngster cite. I think that is important. But I’m 60 in May god willing so I’m now in the ol guy ship officially. You are a very stable person . Good qualities ! ✌️

[45yrsDenmark in reply to Hidden]

Yeah, it's weird.. Before I was like.. "Oh damned... one year older".... that completely changed to: "YES, I got one year older" !! Getting some thoughts flying around in my head and now I appreciate to get older in stead of being terrified of getting older.. Each year I can keep alive is one more year to be there for my kids and make it to be alive long enough to see them move from home and be ready to take care of themselves... For achieving that, I need to make it another 15 years... So I don't look at OS statistics anymore

[Hidden in reply to Chugach]

Thats too dam

Young for this ol mans disease. I got it at 53 and thought that I was the kid . Getting this young makes each day not in misery more valuable .. I read of one young man at 16 with APC. That was criminal for a teenager. I’m pulling for all of our younger guys to be here to see a cure. As someone’s dr has said to them “ You’ve picked the best time in history to get APC” so many new drugs coming up . May you have many more happier birthdays.

[Hidden in reply to 45yrsDenmark]

Peace to our young friend 45yrsDenmark.✌️

[Duan1234]

I guess you've already seen Facebook sites Jane McLelland and Curt Graydon Michael

[Hidden]

Dx’d with PCa at 55 and had primary treatment. By 56 I was metastatic. Today at 74 I remain undetectable. You will read a lot of advice; some good; some not so good. Best advice given to me by two Radiation Oncologist - find the best damn Medical Oncologist available; preferably in research. I found mine at a medical school doing research. I was most fortunate and contrary to the rule.

Immediately started chemotherapy with hormone treatment and remained on hormone therapy for another six years.

A lot of silver bullets have been developed since I started this journey. However, I have had no need for them as I hit is hard and I hit it early. I wish you the best.

Gourd Dancer

[Hidden in reply to Hidden]

Dear Sir , I’ve been here over three years now. Your positive advice has impressed me from day one. You are a great asset to many . Thanks 🙏

[CSHobie]

Hi, welcome to this unfortunate club. I was dx at 52, in 2020.

PSA 300 with too many bone mets to count.

The guys here have a lot of good advice.

Thanks team.

[Hidden]

Diagnosed last August 2020 at 54. There’s a lot of knowledge here, embrace it! It has helped me immensely.

[grahaminator63]

Welcome Phoenixrising69! I was diagnosed at 53 and now almost 58 (in May). I agree with those that have advised to be as aggressive as your mind, body and spirit will allow. Good luck to you brother. A lot of good advice from everyone on this site.

[NewPotatoCaboose]

I was diagnosed with Pca in 2018 and metastatic Pca in Oct. 2020 and began bicalutamide at that point. Research shows CBD works synergistically with treatments like bicalutamide and radiation. CBG is also very good and was recommenced to me by a cannabis researcher. I've had good results so far using them and cannabis flower in combination with conventional treatments. PSA was 67, last test 0.02. Helped mitigate the side effects of 20 prostate RT treatments and 5 RT for mets.

[EdBar]

I was dx 7 years ago at 55, I hammered it early on, I agree with others about CBD, it’s not gonna do a thing to fight your PCa. Click on my profile to see what I’ve done. Hit it hard from multiple angles early on.

Ed

[Hidden]

Check out the Christopher Sweeney study from 2015. It shows that chemo with the initial ADT therapy extend the average lifespan over 13 months. Might want to show it to your oncologist. Here’s the conclusion:CONCLUSIONS

Six cycles of docetaxel at the beginning of ADT for metastatic prostate cancer resulted in significantly longer overall survival than that with ADT alone. (Funded by the National Cancer Institute and others; ClinicalTrials.gov number, NCT00309985.

[RonnyBaby]

I'm aware that you've joined 'CLUB' you'd rather not join. That's unfortunate, but your new reality.There are treatments out there that might make a huge difference in fighting back and about quality of life issues.

I'm going to make a QUICK comment about THC and CBD oil - I've made a lot of responses to others who have wondered about their 'effectiveness' in fighting PCa.

I sorry to tell you that there is NO concrete proof that it will FIGHT PCa. There may be other benefits that might make you feel better and HELP in the fight, but please don't believe it will cure you - it's NOT going to happen.

Who am I?

A licensed grower who has been at it for a few years - that's who. I have studied and looked and searched and have 'consumed' as well.

I grow my own of very high quality and lean towards the HIGH CBD side of application. THC is certainly NOT the answer in my books but a VERY LO amount can be complimentary.

Wishing you the best on your journey .....

[NewPotatoCaboose in reply to RonnyBaby]

There are a number of studies showing that CBD and bicalutamide work synergistically to kill tumors, also that CBD and RT work synergistically to kill tumors. So CBD can and does help. That has been documented. I have personally had a response my oncologist described as better than expected. Check the science.

[NewPotatoCaboose]

Here's an example: ncbi.nlm.nih.gov/pmc/articl...

[RonnyBaby in reply to NewPotatoCaboose]

I appreciate pointing out the 2013 research.

The conclusions - I read the report - at least the highlights - is far from convincing and is not a proper clinical trials on humans. It also refers to ONE cell type in mice where MOST of the success was noted.

PCa is not a ONE cell type disease and the longest period ONE of the legs of study lasted 35 days.

A LOT of the study was in-vitro and many of the conclusions were 'we need to do MORE to confirm ANY of the suspicions.

I would conclude that CBD -something I already pointed to - holds the MOST promise and MIGHT help in SOME cases.

You might also note that Bicalutamide and Docetaxel were the ONLY two 'drugs' that they found were 'interacting' with the CB1 receptor.

Therefore, I'm sticking to my guns - a 2013 study that has NOT gone much further - at least I haven't seen it.

BUT there is SOME proof that 'medical' cannabis is EFFECTIVE for SOME other types of cancer - see Rick Simpson protocol - I personally know TWO people who are survivors THANKS to medical cannabis - one with LUNG cancer (actually multiple cancers) who has beat all the odds twice.

I call 'em as I see 'em and WISHED that medical cannabis was the answer - I'd be cured by now - a clinical study of one amongst many- I have YET to see ONE case where cannabis was the savior for PCa - sorry ....

[SeosamhM in reply to RonnyBaby]

Thanks for these expert perspectives, RB. I think that cannabis has its role in this world, but that role is likely to be very different across individual disease processes.

[NewPotatoCaboose]

I will have to respectfully disagree as the results I've personally seen for my advanced cancer have been great and cannabis and cannabinoids mitigated most of the side effects of 25 radiation treatments and over 100gy of radiation along with the bicalutamide side effects. I held off treatment for years due to fear of these effects. I'm a longtime cannabis patient who first stumbled upon cannabis as a treatment for my congenital glaucoma 49 years ago and have found it useful for a whole slew of conditions from heart issues to chronic pain to PTSD and now prostate cancer and its treatment. Through my longtime medical cannabis activism, I personally know a number of the leading experts on medical cannabis and have been following their guidance. My results speak for themselves.

[RonnyBaby in reply to NewPotatoCaboose]

We will agree to disagree

[NewPotatoCaboose in reply to RonnyBaby]

Because of cannabis prohibition, there is a lot we do not know. New cannabinoids are regularly being discovered . Cannabigerol (CBG) is recently becoming more available, derived from legal hemp. It has come down in cost so patients can afford to use higher doses (as has CBD). Because there is not much funding for research with cannabis vs medical industry and public funding for conventional research, studies simply have not happened on a large scale. The one I linked to above states, "These data support the clinical testing of CBD against prostate carcinoma."

Here is great new study, with lots of documentation, demonstrating a 3/1 CBD/CBG combination was very efficacious vs. glioblastoma cells. THC was found to be less effective. And even if the cannabinoid supplements I take somehow did nothing against the cancer, the side effects mitigation was extremely beneficial physically and mentally, making something I was deeply fearful of into a very tolerable experience, particularly the RT. Cannabis is also known to protect against radiation damage as well as treat radiation sickness. CBG is not really psychoactive, supports bones, and also is said to treat glaucoma and Crohn's/IBS.

[NewPotatoCaboose in reply to NewPotatoCaboose]

oops, link to CBG study: ncbi.nlm.nih.gov/pmc/articl...

[RonnyBaby in reply to NewPotatoCaboose]

IF you consult LEAFLY, there is a pie chart that shows trends towards terpines and the 'specific' things that 'ail you'.

Full spectrum extraction is important in cannabis (CBD) strains - something HEMP does NOT provide.

The original cannabis plant (was) is genetically mostly CBD and the THC has been introduced and 'bred in' by many to go for the THC. Todays "THC' strains can be extremely powerful and I avoid them like the plague.

THC and CBD come in sub-categories D,C,G, V (more significant ones to be added ?) and the pre-cursor sub (a) types.

A lot of the research continues on the terpines and the cannabanoids but is STILL largely restricted in the U S A due to the 'old' attitudes and classifications that remain.

Big Pharma has begun to do some research, but NOT in the USA because PERMITS are required.

You CAN'T find substantive proof in many studies - just teasers and thesis stuff - of course there are indications and some evidence that there is more to it - trouble is they HAVEN'T done ANY large scale clinical trials - for obvious reasons.

Beware of the 'fabricators with an agenda' - there's simply a lot of chatter and SOME reliable science out there - but who do you trust and who can you believe that is a true researcher and not some crusader.

I TRULY wish for better studies and REAL results for PCa which has been lagging and for a DRAMATIC change in attitude in the USA medical, pharmaceutical and political structures.

ONE of the world leaders in the science and research is ISRAEL followed by some European countries. I'm Canadian and we still have a long ways to go, but there is some research (finally) that is being pioneered and advanced - we have legalized it

and allowed for possession and cultivation for medicinal purposes.

That's what made me aware of the research and led to me growing and extracting my own 'medicine'.

I'm still 'searching' and looking / hoping for more data in the future.

What I do discourage are comments and blanket statements from 'posters' claiming things that simply aren't proven as truthful - a lot of it remains unclear and far too speculative -> unfortunately - a lot of potential dis-information.

I'm done with this discussion ....

[bunny91]

Has Xtandi caused stomach problems for you? Since I have been on it I can't eat but a very small amount and I have a lot of gas pain and it feels like someone is squeezing my stomach all the time.

[j-o-h-n]

Greetings Phoenix, Tell us more:

Please tell us your bio. Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/02/2021 1:29 PM DST

[MateoBeach]

Don’t let magical hopeful thinking based on anecdotes ( individual case claims) divert you from what is actually clinically proven to improve your survival. Do whatever you like. Eat however you like. But don’t think that will be better or replace what are actually beneficial and proven. However imperfect and often unpleasant. For most here it is the best possible treatments Plus our diet, exercise, attitude, supplements and/or alternative treatments that we carefully consider and look for good research to support. Not taking these other things instead of proven therapies. Welcome.