Living with it!

Living with it!

Hi All, I was diagnosed in 2009 with PC. I didn't have any symptoms. I went in for my 50 year check up & my doc noticed a slight enlargement of the prostate with a digital exam. As he was getting ready to walk out the door with an all clear, he off offhandedly asked, "You don't have cancer in your family right?". I said actually my mom had colon cancer which they caught early enough to beat it. (She's now 94.) And then I said my brother had some sort of cancer where they put some radioactive seeds in him...(That's how clueless I was) My docs eyes shot open and said "Oh, he had prostate cancer." So... he said we should probably do a PSA check to be sure & sure enough it came back at 14. Did the biopsy & that came back as the real deal with a Gleason score of 3+4 with 6 of 12 of the biopsy's showing cancer. Radical Prostatectamy and 35 sessions of radiation followed. The doc was not able to get clear margins in surgery. I had a 2 ml area where it looked like it had escaped the prostate. PSA numbers cooperated for a little while but it's been 6+ years of the fight of my life. Lupron worked for 1 year and then I had to wait until the scans would show that lymph nodes were involved and then I became a candidate for Provenge. Did the Provenge treatment, added Eligard, Xtandi and Celibrex in 2014. At this point (March 2016) the numbers are going in the right direction with each PSA test. Before Provenge my PSA had climbed to 3.4. That was in Nov. 2013.

In May 2014 - 1.57.

Nov. 2014 - 1.29.

May 2015 - .97

Nov. 2015 .46

I've been pretty strict about a non animal based diet since the whole ordeal began. I stay away from meat, dairy and sugar for the most part. The most interesting thing as of late and what I think might have attributed to the 50% drop in my last PSA is that I've started ingesting CBD oil twice a day.

I also put a heaping 1/2 teaspoon of turmeric powder and a chunk of ginger root into my smoothie every day. (I have a Vitamix. Pretty important for getting all that I put into my smoothie to break down so it's edible and, for the most part enjoyable.) According to stuff I've read is that you need to add black pepper with the turmeric to help your body assimilate the turmeric better.

Back to the CBD oil. CBD oil is the non psychoactive aspect of the marijuana plant. Because it has very little THC (The psychoactive aspect of the plant) it actually is labeled as a hemp product. I get no high that I'm aware of. I'm still working 40 hours a week and can't afford nor am I interested in the high that's associated with marijuana. I started taking it 4 weeks before my last PSA check in Nov. 2015. I don't know that it's responsible for the 50% drop but I hope it is. My next PSA will be in May & I'm very curious to see what comes of it.

Between diet, pretty regular exercise, pharmaceuticals, an amazing supportive wife and family, and a strong praying community around me things feel pretty freaking good. As all of you can attest to, every day and every moment is a gift that we no longer can take for granted.

I'm coming up on my 57 birthday and looking forward to as many as I can get. :-)

Wow that got long winded.


32 Replies

  • Steve,

    Welcome to the group and your story is great. How luck you are that your doctor paid attention. Of course if he had given you a PSA test at the beginning your luck not have mattered as it would have been picked up anyway.

    This is why we are moving into a potential crisis situation as the PSA test continues to be discarded.


  • Yeah that whole push away from PSA testing is really frustrating. In my case it absolutely made a difference.

  • Yes, PSA testing is the most important test that we have at present, and even though it's not 100% accurate, it has been spot on in my own case. At diagnosis, my PSA was a very high 744, which proved to be very accurate, as the cancer had spread to all of my pelvic lymph glands, spine and sacrum, and the prostate had grown enormous, invading the bladder, partially blocking both ureters and bladder outlet. It was like sitting on a painful tennis ball.

    Now I have the painful tennis ball feeling again, which indicates that the prostate tumor has had a growth spurt, and it's even more painful than at the beginning. So I may have to finally have the prostate removed, as well as the bladder and a colostomy, or if I'm very lucky, perhaps radiation can shrink the accursed thing again.

    But my radonc thinks that it could open a stoma in the bowel, so radiation may not be possible

    I have an MRI tomorrow, which should determine my fate, and won't know the results until Good Friday, which I hope is a good omen---Good Friday---good results.

    Living with advanced PCa is so difficult---it has taken over my life and limits my activities. Ihave to accept my limitations, and yet keep fighting to maintain my quality of life.

    I can only hope and pray for the best. And I wish you the very best of luck, also.


  • Good luck to you. You are in my prayers.

  • Yup, It's a constant fight. My wife & I have talked about how at each new turn you potentially have to get used to "A new normal". Very tiring at times. But...the alternative sucks so we keep getting used to each turn of events, celebrate at the good ones and mourn over negative ones. Then get back up on the saddle and love life for all it's worth. Thankfully we've had a run of positive results lately.

  • Hi Steve, my story is much like yours, only I had radiation after finding a PSA reading of 29 and Gleason 7. I didn't know my father, but later found out he had PC as well and my mother had colon cancer before passing away with brain cancer six months later. I have had the 41 trips to the hospital for radiation and it worked great for ten years, then the numbers started to creep up and I tried the four most common hormone treatments only to reject all of them over the next five years. Since there was nothing left for me to try, they told me to go home and wait and see and make peace with my maker. I tried all the natural remedies I could get my hands on, but my PSA climbed from 86 to 130. I exhausted the internet looking for the magic bullet and then one day the hospital called me in for a meeting. They said they had a trial study they thought I might be interested in and so began my new study using patches of Estrogen 100mg., that I put on my back. Four for four days and then three for three days. My PSA immediately dropped from 130 to 87 in three weeks. Then after two months it fell to 38. I cut back the patches to three every three days and two for four days. My depression was getting ahead of me so they agreed. One year later I was down to 3.5 and 18 months later I am using two patches all the time and my PSA is 0.01. That is the short version of my experience with PC and I hope I can direct more of the members towards this new hormone with little or no side effects, unlike all the others I have tried? If you are interested please write me through this website and I will give you my name and email address, so we can talk more? Pat

  • Pat, thanks for inviting our inquiries and for telling us about your interesting estrogen therapy. I've never heard of, nor been told by my oncologist about the estrogen patches. I've been told that my metatastic prostate cancer will not improve with chemo or radiation, and hormone therapy is recommended. But no mention of the patch technique. Only mention of a medicine they use, the name of which I don't recall.

    I would like to ask my oncologist about the patch technique for applying hormonal therapy. Please let me know where I can find out more about this.

    Also, is it just for comfort, or palliative care? Or will it stop the metastisizing activity of the prostate cancer. Mine is already in the bone and lymph nodes.

    I am considering cannabinoid treatment, which are legal here in Washington DC. Takes a while to get DC Health Dept approval though, I'm finding out as I endure excrutiating pain in my abdominal area.

    Please share information with me so we can keep in touch. I'd like to know more about your progress using estrogen patch therapy.

    Thanks for being there,

    Wally Dickson (legsdickson)

  • Hi legsdickson, thank you for taking interest in my fight against PC. I would prefer to answer your questions on a more controlled website, as the treatment I am currently on is only being used by one person, me. I am on Palliative care and have been for 19 months. It began with them giving me drugs to control the pain in my back L4- L5, in the lymph nodes and by chance my pain doctor knew the Oncologist where I was being seen for the PC. They started me on the patches, they are patches of Estrogen and have a brand name of Estrodot 100. I tried to follow up the contents of the patches and when I spoke with the Vice President of the company they did not want their name mentioned in the same sentence that contained male use and immediately hung up3on me. I discussed this with my Oncologist and he said they are afraid of law suits coming from the improper use of their product, since it is for female use only. The story is much longer, but I prefer to tell you one on one and not on open form? I am new to this site two days, so I don't know what rules we must abide by and will research it to see what I am allowed to say and not say? I live in Canada and I am the only one in this trial that we are aware of, but I don't know that 100%? I will get back to you with anything I find out about this site? Pat

  • Hi Pat, That's very intriguing. You made mention of depression. What do you think was causing your depression? It's not clear in your post. I'd be interested in talking more.

    Thanks, Steve

  • We have not found the root of the depression, but suspect it is the pure Estrogen that I am absorbing from the patches? I don't like to talk on an open form and will try and find out how I can talk with you one on one without breaking any rules? I will tell you I am on Palliative care and have been for 19 months. I had no ware to turn to and the hospice took me in and treated my pain and helped me get my life back.

  • Steve, depression episodes are almost inevitable with advanced prostate cancer.    First of all, we have an incurable disease;      Next, the treatments affect our hormonal balance.   

    We would be abnormal if we didn't have depression because of our situation.   And it's okay to feel sorry for ourselves, but not to wallow in it; life must go on.      When I fall into the depths of depression and despair, I tell myself "this too shall change," and I will bounce back again.


  • Cericwin - Is prostate cancer truly "incurable?" Or is it incurable simply because the oncologist says it's incurable?

    I'm using natural therapies (combined attack) that I hope will kill cancer cells. I don't know about "cure" or "incurable," but I do intend to try to beat this cancer and won't easily give up and settle for just "palliative care."

    I have little faith in the "traditional" medical community. I'd rather keep trying methods they don't approve of, some they don't even know of.

    I've lost all confidence in the medical community, fearing they have become just an arm of the pharmaceutical industry and know little medicine except as drug pushers.

  • At diagnosis, my PSA was a very high 744, and had metatasized to "innumerable" lymph glands, spine and sacrum.    My uro told me that my PCa is "treatable, but incurable."      And, given the spread of the disease, and the current available treatments, it was an accurate diagnosis.      However, there are new immunotherapies and treatments coming online which may reverse many idividuals'

    prostate cancer.

    I doubt that at this stage that my cancer can be "cured," or sent into remission; I'm too weak for chemo, and have a hypersensitivity to many drugs.      So under current standards, I believe that when the cancer has spread to bone and lymph glands, as in my case, it is indeed incurable.       But caught earlier, even with some small metastases, it can be sent into remission.

    I have read about a number of individuals who have successfully managed to send it into remission with ADT or other treatments when the mets aren't extensive.       There are so many variables with prostate cancer, and with the new treatments that soon it may be possible to cure individuals with more extensive disease.    But I don't believe that it's possible in my case.      I will fight on, neverthe less.


  • If all you consider are the traditional toxic treatments that your doctors are locked in to, then perhaps your cancer is incurable. But if you will think outside the box and research natural therapies, you will find a considerable number of possible "cures." Heavy dosages of Liposomal Vitamin C is only one of these. By heavy dosages I mean consider 24,000 mg to 32,000 mg of Liposomal Vitamin C per day, taken every hour or so. The liposomal form of Vitamin C is reputed to be even more effective at killing cancer cells than IV Vitamin C. Try it!

    Another possible therapy is cannabinoid oil. The CBD in that is reputed to kill cancer cells while leaving healthy cells healthy.

    Also consider an immunomodulator such as beta glucan. The best of these, according to my research, is derived from the skin of baker's yeast. You'd be surprised at the dramatic increase in energy this therapy will provide in just a day or so of use. Anyone undergoing chronic stress (which most of us cancer patients are subject to) should take maybe 2,000 mg a day, 1,000 mg in the morning and 1,000 mg in the early evening.

    These therapies and others that I haven't the time to elaborate upon right now, can certainly eleviate pain and slow down cancer cell activity (metastisizing), and strengthen the immune system to naturally fight and kill cancer cells. Especially cancer that has progressed into the final stages, spread throughout the body and no longer subject to more traditional therapies.

    Don't let yourself get "locked into" the traditional medical treatments that are usually so toxic that they do more harm to your body than good, and depress your immune system to an extent that your body can no longer naturally fight the "enemy."

    Most of all, don't give up the fight! You can win the battle, but you must have faith that that is a possible outcome. Don't listen to the "medical experts" who tell you that your cancer is "incurable."


  • Legs, I totally agree with you.  I have been on Xtandi, firmagon, avodart, and more.  One month ago, I quit all  cancer meds and on T replacement and psa rose fro. 2.4 to 5.3, in a month. Diagnosed in 2009, prostactectomy,  etc. Too many side effects giving me very poor qol. Trying high dose oral vitamin c. Up to 20,000 mgs per day so far. Of course the psa jumped but may level off. T is now 22. Feeling much better. Am thinking of waiting until I have noticable symtoms before going back on hormone therapy. I am totally on my own and if I get too sick to take care of myself, I'm done. I'm 69 and if I thought I had 10 more years, I would just enjoy my QOL. I'm in Canada as well. I have never had any pain and would not even recognise I have cancer, so the many side effects from the drugs are what has made me miserable for 7 years. I'l keep everyone up to date on this unusual protocol and my next blood tests are in a month. Even if psa rises again, I will want another month off. Wish me luck, Curt.

  • Yeah it's crazy Curt. I've never felt my cancer either but holy crap, talk about the side affects of the drugs that are supposed to be helping us. I envy your bravery to jump ship with the docs. I fantasize about what it would be like to be able to move without pain and not have the daily fatigue and lack of motivation to do much. I hope you're looking heavily into cancer diet books and some of the natural herbs and spices out their that seem to be getting noticed as cancer fighters. Good luck to you and I look forward to hearing more of your journey as it progresses.

  • yes Steve I am 2 months without cancer drugs and feel great. Psa has doubled to 5.3 in one month but this could be a jump that may level off. We will see. I am only taking Metformin and yes I am taking some supplements. I am taking high dose oral vitamin C (because I can't afford the IV). I'm up to 14000mgs per day and my goal is 50000mgs. Might kill the cancer, might not, but I feel much better. Cheers, my friend, Curt

  • Hi Curt,

           I find myself in somewhat of a similar situation as yourself.      I'm also alone, except that I have a paid caregiver who comes in four times per week to assist me with cleaning, laundry, shopping and escorting me to medical appointments.        Perhaps in Canada you can get a caregiver to help.

    I'm also afraid of becoming incapacitated.      I'm already in palliative care for pain management, and hospice is one short step away.    

    I'm 67 and have been on Xtandi and Lupron and the side effects were devastating--insomnia, weight/muscle mass loss, nausea, pain and more pain, but as it was managing for the most part to slow the cancer's progression, it was worth it.       I had an orchiectomy in Nov. 2015, and Lupron was discontinued.      PSA went down slightly and then up again, and testosterone level bounced up and down.       PSA in Feb. was 5.2 and in March went down slightly to 4.43  but T level peaked again at 98.4, despite removal of testicles.

    Now I'm having extreme pain in the prostate, and had an MRI today---it was sheer torture---and won't have the results until Friday.

    But don't be discouraged by the PSA going up and down.     It's a long-range trend that's more important than just the month-to-month fluctuations.

    You have my prayers and the best of luck to you


  • Curt, thanks for your supportive reply. I wish you best of luck with your next check up. I hope it's positive.

    Keep up the valiant fight!


  • Thanks,Steve. Yup, I have reached a point where being miserable all the time, having no one to talk with, except of course my good dog, Woody Harrelson, it's time to have some normality.  

  • Hi Curt, I am a Canadian as well and new to this website. I told a couple of the guys I was at the end of my rope and was giving up when a London Oncologist asked me to try the Estrogen patch. It is new to this hospital and he tells me no one else qualified to try it, so I had nothing to lose. My PSA was 130 when I tried wearing the patches and within 6 months had fell to 36 or lower. I have lost my short term memory, either from the radiation I received or just by chance, so I have to write everything down to remember anything like appointments and such. It has been 18 months and I am at 0.12 and feel great. The only side effects I found were my man boobs grew and are , were very tender to the touch. I had a dual radical mastectomy and that took care of the boob problem for good. I had that done locally in the hospital and it was covered by OHIP. I have had such good success with this patch, that I am down to wearing two from the original four I started with. They are called ESTRADOT 100 and are not designed to be used by males, but only females to up their Estrogen count. I find myself repeating what I wrote last week and I don't know how you get back to previous copies of this information? In closing, I am on Palliative care for pain control of the Cancer site in my spine, but I could not live without it because it is a 9 out 10 when I forget to take my drugs. Good luck to all of you and they will find a cure for this, it's just that they make so much profit from drugs I can't say it will be i our lifetimes.

  • Sawmil, thanks for the info, I will remember the Estradot 100 for future possibiliy. My doctors listen to me as far as my treatment requests, as I have refused any radiaton or chemo forever. Best of luck to you, my friend, Curt.

  • Steve- I'm not sure if regular black pepper helps absorption but there is a product produced from black pepper called Bioperine- it's available in health Food stores-

    I use it 1x a day (10mg ). My curcumin comes with Bioperine added. It supposedly helps older people absorb vitamins and other supplements. You're not really in the older group yet since you're only a few years older than my son but it's not too expensive- pretty sure it's under $20 for 60 capsules. Might help. 

  • Hi Adlerman, Good to know. Where are you getting your information? All I've read is that pepper and/or heating it with oil helps the body's absorption. I'll need to look into the Bioperine. Thanks for the heads up. How is your battle going? Are you on pharmaceuticals or are you doing all natural stuff?

  • I was lucky - I switched Doctors in 2001 from a private MD to the VA. The VA MD did a full physical and he found a lump on my prostate.

    He referred me to a urologist- she did a PSA and it was only 3.6 but followed up with a biopsy anyway -only 6 samples and it came back as a Gleason 8 . I was going to get a radical but I wasn't impressed with either MD that I saw. The VA had given me a Lupron shot so I took some time and searched online and found a guy in Celebration, Fl. doing Cryotherapy. I contacted him and he was willing to take me.

    The selling point for me was that cryotherapy is repeatable while other options- not so much. 

    He was doing some research on aggressive type tumors. He wanted me to have 13 months of Lupron so I didn't have the cryo until June 2002. No other treatment since then and my PSA has always been below 0.1. The trade off was ED. 

    I was into Vitamins since late 1968 and while Doctors always tell me I'm just paying for expensive urine I've avoided some health problems that ran in my family - like heart attacks and diabetes. I don't think I'm special so the vitamins get the credit.

  • Steve Skiba,

    My story is similar to yours as I was diagnosed with stage 4 metastatic prostate cancer 15 months ago. I was treated for prostatitis at age 50 but with no PSA test.  At age 55 I went into my primary family medicine doctor and once again treated for prostatitis and then had my first PSA test.  I had a reading of 150 and it wasn't until 2 months later that I finally was treated for cancer.  I am on Lupron and had taxotere therapy. I'm now taking xtandi     but my PSA never gets below 40. I hope with prayers and treatments and supplements thatI can stick around long enough for my wife and daughters and see my youngest one graduate from college!  

    Mark58 from southeastern Minnesota

  • Regarding black pepper, it's well know (can't document the scientific papers) that black pepper helps the body to absorb more "stuff" from medicine as well as herbs/spices.  I heard this years ago in a talk by an Ayurvedic doctor.  For those of you not familiar, Ayurveda considers food, herbs and spices to have different properties. That's why you will hear Indian cooks talk about spices and what qualities they have. Disclaimer - Ayurveda isn't a good treatment for cancer. 

    Mark (former cook)

  • Hi Steve,

    I had to just say, what a story. We are the same age, and the same age at diagnosis. If my grandson was in that pic, it would be me. That's how much your pic looks like me. I'll be 57 on May 13th. The same day I meet my new urologist/oncologist. So looking forward to see what a proper doctor acts like.

    I do want to make a comment concerning the CBD. I grew up smoking pot, it was either you were a jock, or you were not. No in-between that I recall. Went into the service for ten years, followed by different jobs on and off. I had my own business for quite a while, while working the others. When I got sick, my sister-in-law, who's a PHD, suggest I find my old dealer. We all had a laugh. That was early in 2010.

    But, here I am today with a vape pen and several grams of wax. I'm sure most men here won't understand, but it helps. I live in "Christieland", so no medical maryjane here. I should rephrase that. Medical marijuana is legal. There are three dispensaries in the state. There are only a handful of doctors able to prescribe it. And, it costs more than on the street. So, I think the gov't here is doing a bang up job to keep it on the street. 

    That being said, I hope not to alienate anyone here. These guys are the best.


  • Hi Joe!

    My father (63 years old) was diagnosed two years ago with S4 Pca. PSA was 12, and after 8 months of radiation and hormone therapy, it has dropped below 1. The doctors advised us that the cancer wasn't gone, but it was at a managable state and we would just have to keep an eye on it. That was in April 2016. A month later he began complaining of severe back pain- all of his doctors, oncologist included, advised him that it was likely a result of stress and he should take OTC pain meds and get a massage. In July 2016, he called me one night in severe pain and I had an ambulance go pick him up to take him into the hospital. When they were ready to release him from the ER, he was unable to move/feel his body from the chest down. After scans were done, they diagnosed his cancer metastatic with mets on his spinal cord and ribcage, causing spinal cord compression and the paralysis. They did emergency intense radiation, and he spent over 5+ months in three different hospitals. His compression was relieved, and he has recently regained slight movement in his feet and feelings throughout his body.

    In February this year, his PSA had jumped from 3 (when he was residing in the hospital on Xtandi, Xgeva and Lupron injections) to 8. They stopped the Xtandi and prescribed him Zytiga (+ Prednisone) in it's place since the PSA kept rising. He had been seemingly doing better and even participating in intense physical therapy to help with mobility increase. However, in May his PSA was up to 39. He was scheduled to do full body scans to reevaluate his condition two weeks ago, but was hospitalized after a UTI and severe chest pains. They did a chest CT and from that alone could tell that the mets in his chest had grown and a few had popped in his lungs as well. Needless to say, it was heartbreaking news.

    Since the oncologist suggested that the only available option left was chemotherapy, and he refuses to do chemo, he has stopped all of the cancer fighting drugs/injections. It's been almost a week since he has stopped them and he is on at home hospice for pain management and sever nausea.

    Sorry for the long winded back story, but my mom and I are looking into alternative options. He had been doing small doses of CBD oil, but we are looking into increasing this and adding any other natural fighters to keep him around as long as we can. Any information on how much/how often/how you administer the CBD oil would be so greatly appreciated. Thanks so much.


  • You know Sally, a lot has changed in just a years time. And, how did you come across this particular post?

    Anyway...your father should not be off his PCa drugs. Please! Get him back on them asap. If he's in pain from his mets, he should be on Xofigo, no question about it. Chemo gets a bad rap, ask any man here, and they will tell you. CBD Oil, Marijuana, Opiods, what's going to help with pain that's insufferable now? I wish I could give you some advice here, but there's nothing much I can say. If your from a state that has legalized Medical Marijuana, with his history, he should be able to get a script for it, and get edibles. Best wishes.


  • Hi Joe. I just came across it by searching internet forums for particular keywords related to my dad's condition. I honestly had avoided doing research until just a few days ago, as it can be a little disappointing and morbid at times and I wanted to remain hopeful. My dad is on a fentanyl patch which seems to keep his pain at bay, and has oxycodone for breakthrough pain, though he rarely takes them because he hates the side effects.

    I will look into Xofigo, though I was sure that I read that this treatment was only for people with PCa that has spread exclusively to their bones and not into other organs. We just got news this week of the newly formed lung mets so I'm not sure he would qualify.

    He is tired of fighting and frustrated with his paralysis, but I am not going to give up hope on him just yet. We are waiting to get his medical marijuana card processed, but have connections for edibles and oil until then. Florida just legalized medicinal in January so it is still a new and long process.

    Thanks so much for your reply, and I hope you are doing well. <3

  • Hi Sallie,

    I hope I didn't come across as harsh. I didn't know about the Xofigo and soft tissue mets. I can only try to imagine his frustrations. I can only speak for myself in this case, and I know I have degenerative disc disease, on top of the two known mets on my Lumbar spine. And, fortunately still no pain from them. Put your fathers story as a main post, and see what advice you get. I'm just one guy, you know?

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