End of the road?

I'm 57. I was diagnosed when i was 55 and have burned through Zytiga...Xtandi...radiation...chemo twice now and cancer keeps coming back. Cancer is now castrate resistant. I don't think there are any other treatments left to slow or stop advancement besides chemo and I am not going through that again. Twice was enough. It is beginning to feel like a hopeless situation now.

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  • I tried to get into a phase 2 trial utilizing high doses of testosterone every 28 days. I've read where majority of subjects responded well and one has been in remission long enough to be considered cured. I couldn't get in due to chemo (disqualified). I want to try this. The men in study not only saw a decrease in cancer activity and tumor regression they also felt better...stronger...healthier and some were able to have sex.

  • I'm sorry to hear about your situation. 57 is young for this to be happening to you.

    There was a little trial (just 10 men) of Keytruda on men who were castrate resistant. 3 of the 10 had spectacular responses, going from PSA levels of 46, 71, and 2503(!) to < 0.1. Three out of ten isn't great but, who knows, sometimes a guy can get lucky.

    See: prostatecancernewstoday.com...

    Gusgold posted a message about this and there was a discussion several months ago. Put "Keytruda" in the search box on this screen to find it.

    Best of luck.

    Alan

  • Thx Alan!

  • Do you know what the trial is called. Also, does it matter what the PSA is? One other question, when you say you were disqualified due to chemo, what do you mean? because you had previously had chemo, or because you never had chemo?

    Thanks

  • Because I have had chemo.

  • My oncologist is treating me with this therapy outside of a trial. I too have been trljrough 22 cycles of chemo with mixed results. So far I'm having good luck with the BAT.

  • Gecrellin... does ins cover BAT therapy?

  • What was the chemo you had? I finished Provenge immunotherapy a few weeks ago. I had heard the same thing about hi doses of testosterone and asked my oncologist about that as a future possibility.

  • Docetaxel plus Carboplatin. I didn't do all 6. Only 5. Made me sick.

  • How about showing the doc this study Lombardi , ncbi.nlm.nih.gov/pubmed/145... 75 % response rate in men who are crpca and chemo resistant. I am not far behind brother, doing chemo now, keep dancing, Is Lombardi your real name, I saw a movie on Vince not to long ago, what an amazing man

  • Yep. Not related though. 😊

  • And...thx Dan!

  • That study looks really promising. It seems surprising that I haven't heard anything about it even though it was published in 2003. There doesn't seem to be a whole lot of follow-up though.

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

    12 of 24 patients had a PSA decline 12 weeks after starting treatment.

    On the other hand, this trial didn't produce much optimism about it:

    ncbi.nlm.nih.gov/pubmed/215...

  • I am stunned you've done all that in two years! What's your PSA doing?

  • My PSA never got above 16 even pretreatment. When I was diagnosed it was 2.50 and Gleason #s were all 9s. It begins doubling within months post any tteatment...so...I won't have long after this round of chemo. Last treatment was last week. It's aggressive just like my dad's. It killed him in 18 months

  • I'm sorry about your dad. I certainly see your frustration. I hope you are being treated at a major cancer center with access to other trials.

  • Thx YC. Am being treated at both Dana Farber and Memorial Sloan Kettering

  • I am so sorry about your father. There are new treatments since your dad fought csncer. Provenge? Bat? Holistic medicine that just might slow it down? I can understand your feelings if hopelessness and frustration,,and you are in my prayers.

  • I just wanted to leave this paper of the study Alan spoke of, the actual results were 3 men had near complete response from way up on the mountain and 3 had near stable disease out to 50 weeks, 4 did not have response. This is a good response and other pd1 inhibitor were not so good in our cancer , but Keytruda showed alarming benefit, this is a study from the past year so all new and pd1 inhibitors are all the rage in cancer now personalgenome.com/wp-conte...

  • Thank you.

  • Have you ever tried 1 or 3 mg DES with anticoagulation, worked great in many men, very inexpensive slight blood clot risk, but hey all these drugs have risk, but that's why they anticoagulate, 3 mg was less risk than 5 mg and just as effective, and 1 mg even less, don't hear much about these drugs used so frequently in the past , since the 10,000 a month drugs came out. DES can be compounded in Pharmacy for 200 a year. I Would also seek help from the free PCRI hotline Google that Prostate Cancer research institute)

  • DES is used, also.. some use Estrogen patches. There are some forums where men are experimenting and discussing DES.

  • well that is true, I got I think 5 extra years out of estradiol patches myself through returning to them at different times, The transdermal patch bypasses the liver and nearly eliminates the blood clot issue, The Dr Sartor has said he has seen DES work when the patches did not.

  • Thanks...but am not willing to try female hormones as a treatment. I am having enough trouble emotionally with what the current treatments have done to me. My partner will no longer be sexual or physical with me. He states that he is no longer attracted to me because of the treatments

  • When I was on Estrogen, It was Great to have some hormones in my body, Though I can assure you I was still a Man . Just that I was able to laugh , cry , talk a lot, and all the while my psa went down. I feel so Bad your partner can not understand what you are going through here, and what a terrible thing to say, wish you had an alternative to a caretaker who really cared about you, then again I wish that for myself too. what is Love anyway is it just physical or is it a deep feeling for another Human being. Most of us have had to give up our sex lives because of this Damn disease, luckily in my case my wife considers it time off for good behavior.

  • Thx Dan. I get emotional enough at this point with lack of testosterone and the small amount of estrogen my body produces.

  • There is also Lu177 PSMA treatment available in Germany. I believe I have read of men travelling to Germany to have this treatment.

  • Check out chipas hospital in tijuana mexico. They use the gerson therapy has been around for over 70 years. I was diagnosed with prostrate cancer a year ago. Psa was 3.2 i would not go thru the crap my oncolgist wanted ne to do. I went to mexico in mid sept 3 weeks,later i had detoxed my body,lost 35 pds psa was lowered to 2.4.still have cancer in my system but i feel thru supplements and more vegge lifestyle, anyway when i went to my oncologist he,was mad at me and said obviously youre in good health ill see you in 8 months for a biopsy. I will do a fusion biopsy. Im feeling great, need to see thw website the truth about cancer,the world global scare. I hope this helps you. Ive kept my weight off,i exercise slowly. Eat less that 10%meat for the week. But most important got to get all the bad chemicals out there awat from you. Use organic soaps,underarm e erything has sodium,just try .

  • Have you tried Lupron?

  • I have been on Lupron since post surgery.

  • Sorry you're going through this. Take a look at this recent story, dotmed.com/news/story/35446. It seems there is a new drug which helps when you become Xtandi resistant. I hope it helps.

  • Paul, wow , Great Research! The study we have been waiting for and dated 2 days ago, I am so excited to hear this, make me feel we are getting closer if we can shut of resistance to drugs we have, this is a clinical trial I would go for . Cleveland Clinic is awesome, and only 8 hrs away, Keep your eye on this one for us all.

  • Cheers Dan, I totally agree. I believe PCa will become a chronic but manageable condition. I just hope it happens while we're still here!

  • Thx Paulofaus.

  • Paul. The link just takes me to a list of stories...but nothing specifically related to prostate cancer

  • I've printed the article to PDF, which you'll find here: drive.google.com/file/d/0B4...

  • Have they tried Genetic/Genome testing lombardi24? For clinical trials. I'm way out of my league here but I'm grasping for straws for you.

    Hugs,

    Jackie

  • Yes. Thx Jackie

  • medsci.org/v05p0062.htm

    Apatone A is vit C and K3

    You can buy Prostay it is the same

    We had 6 months stable out of it ..we took 9 a day

  • curious Lombardi24 what IV chemo you were given and what side effects you had ..

  • Docetaxel plus Carboplatin. Nausea...some fatigue (closer to last treatment)...stomach cramps...diarrhea...alternating with constipation...body aches.

  • yes my husband did casodex -zytiga -xtandi -taxotere -jevtana and more taxotere then xofigo ..Jevtana and xtandi had the worst side effects ..xofigo helped his pain but depleted his blood levels ....are they giving you pain med and nausea med are you taking it?--my husband got IV fluids 3 days after treatment ..made a world of difference --good luck .thanks for responding

  • Just finished chemo. Am on the mend. I did take zofran for the nausea. My current mets are no painful yet. Had the bad ones irradiated.

  • Lombardi - My husband Mike is starting Provenge Friday - it's where they take your blood - send it to Seattle - add prostate killing agents - then they put it back into your body - we're praying it works - he's been thru the same thing - but keep trying things - don't give up -

  • Sorry about your Dad Lombardi

  • Thank you. Was years ago. I was 15 then

  • Oncologist states that Provenge would most likely not work in my case. Cancer is too aggressive. I will experience progression before the newly re-engineered leukocytes can be effective and then beyond its capability. He tried to get me in a trial involving Provenge and an amplifying agent...but my cancer progressed to where I needed to do chemo...and missed trial.

  • Hi Pennysue,

    My husband has heavy fatigue but otherwise no side effects from Xofigo (Radium223) -3 Shots and Xgeva (5 monthly shots) and ongoing Lupron since 12/2016.

    What treatments has Mike had in 2017 so far?

    Where is Provenge blood work done in Seattle? Provenge has not been recommended yet for DH. What were you told that made decision to use Provenge?

    Take care of Mike....and yourself!

    Annie in Seattle

  • You can google it - its Medicare approved now - otherwise its very expensive - just praying it will work

  • Mike was diagnosed in 2012 - he's on Lupron - had radiation twice - taken zytiga. - it did not work - had chemo twice - did not work - just ask your dr does he recommend Provenge - same side affects as chemo - so we don't know yet the outcome - hang in there - got to keep trying

    Penny

  • Hello Penny,

    Thx for your response. My DH was also dx'ed July, 2012. Xytiga did not work after 3 mos of trying (per PSA and mets) We will ask SCCA dr. about Provenge when have 2nd opinion there mid March.

    In the meantime, the mild lower back and pelvic pain has disappeared for now . Maybe helped by treatments?

    He will get bone density test in 3 weeks. In 2/2015 was a good report.

    please keep us posted on Provenge SE's for Mike .

    Also, has Mike gotten a genetics test..if so what kind? Results?

    Thanks, Annie in Seattle

  • Will let you know about Provenge - please read about it - no genetics test - mother died from ovarian cancer -

  • Lombardi- are you getting Lupron shots too?

  • Yes with Zometa every 3 months...but cancer is now chem castration resistant.

  • Have you contacted Compassionate Oncology in Los Angeles? They've been doing high-T treatment for decades ... WAY ahead of Johns Hopkins and Fred Hutch. I've done two phone consults with them, and visit them in person in a couple of weeks. They're going to want me on chemotherapy, but my research so far says, "No, thanks". They have patients from all over the world (50 just from Germany), and have published some truly eye-opening results. Their website has 2-3 days' worth of highly educational papers and video lectures written for patients yet still educational for many or most oncologists.

    compassionateoncology.org/

  • I will. Thank you.

  • Very interesting posts and links for treatment options. My husband, age 55, was told "we have exhausted all FDA approved treatment options and there are no clinical trials available in which he qualifies" at his last oncology visit.

    We knew it was coming, like you Lombardi he has an aggressive pca and has go thru all the same treatment options plus a couple clinical trials over the last 3 years. His last PSA was 1400. He has bone mets with a great deal of pain, having pain pump put in tomorrow. And started on med marijuana (legal here in Illinois) hoping some miracle treatment comes along in the meantime. Good luck to you. Sending prayers!

  • God. I'm in tears Chaz2112. I am so sorry that he is in so much pain. Wtf. So unfair. I will pray for him. Hoping for some relief for him and a break thru for all of us. Has he tried Xofigo? Dana Farber in Boston has a trial coming up testing Xofigo and Keytruda (drug that saved Jimmy Carter) to see if it will also have the same results with prostate cancer. Here's the number for the GU dept. 617 632 6328

  • Just our perspective on Xofigo. It caused much worse pain, severe anemia, no benefit the mets and complete paralysis from the trunk down.. within two months of completing this drug. We tried to stop it because the pain became so bad, but they told us the protocol is to complete the 6 injections so we continued, but it was really not a good choice for us. Just to let you know there are some that don't get benefits from this. Again, he had an agressive cancer.

  • Yes he has been thru xofigo and keytruda. The only thing the keytruda did was burn out his thyroid so he is now on synthroid. Xofigo dropped his blood cell count to almost transfusion level-he was miserable while on it, he had only 4 treatments and scans showed increased bone mets and so it was stopped, zytiga was started but psa kept climbing. He got radiation treatments and then Pain pump was put in on Thursday, seems to be helping with the bone pain but he is now uncomfortable from the incision pain-he has two incisions one in the back and one in the right lower abdomen. He doesn't handle anesthesia very well (n&v) either☹️Poor guy just cannot catch a break. I don't know how to help him, he is so angry and depressed. This sucks so much!

  • The xofigo worked wonders on my spouses bone pain but like I said it depleted his blood levels ...Boston hosp was a delay of 2-3 months to begin ..Florida was a 2 week wait ...

  • So sorry to hear these treatments have failed so quickly but it seems that unfortunately, some of you have this aggressive type of cancer, with low PSA's and short time successes with these nasty drugs. My husband was one who tried them all and it was never successful. I hope this doesn't sound harsh, but spend as much time finding ways to just get the most of of each day left and if and when something else comes up, perhaps it may help, but at least you will give memories to your family and pleasure to yourself. I wish you the best. God bless.

    Charlean

  • Charleen said it all ..my husband tried it all ..pills chemo radiation and we worked thru it together .everyday was a gift .. never give up hope .fight the fight .talk to each other .and pray for a cure for others ...attend a support group after your spouse passes .there is no book on how to fill this void ..it's not an easy road ..just keep trying ..

  • Thank you Charlean

  • With a name like "Lombardi" KEEP ON FIGHTING!!!

    Good Luck and Good Health

    J-O-H-N Wednesday, 02/15/2017 1:35 PM EST

  • Your disease sounds similar to mine in that your PSA stayed relatively low but the cancer growth is aggressive. My PSA did not go above 4.3 even though I'm at Gleason 9, Stage 4 ( some lymph node's and scapula ). Eight months since diagnosed I have been in treatments ever since. PSA now <.1 but afraid once I stop it will come back quickly.

    Less than 2% get the type I have and I'm wondering if yours is the same. Mine has what is called "signet ring cells". Do you recall seeing that description? It would be listed in your biopsy.

  • I'm not sure. I'll look. I know that my oncologist stated that it was very aggressive.

  • Thanks Lombardi. Just wondering if we have the same strian. So far I haven't talked to anyone who has it. Would be good to compare treatments and affects.

    Mike

  • Yes. Would be great to chat with another guy going thru the same thing. No one really gets it.

  • My name is Bill.

  • No it is not. The fat lady ain't sang yet. 57, I'm there, but I got it 7 years ago. Age isn't relative.

    You have to think out of the box now. It's too bad you're going to have to cram a lot of info to keep yourself going.

    Good Luck, Joe

  • Thx Joe

  • Just read your post as well as one of the replies that mentioned a trial that, after an online search, I learned was started by Dr. Samuel Denmeade at Johns Hopkins Univ. where Dr. Denmeade reported that injecting a small group (16) men who had already taken testosterone lowering treatments, with high levels of testosterone, apparently got rid of cancers in some of the men. There have already been a number of articles appearing online about this and in one of them, Dr. Denmeade said other universities / medical centers are preparing to launch trials. The number for Denmeade's office at Johns Hopkins, where you might be able to learn more, is 410-955-8964. I diagnosed with aggress, but still localized, prostate cancer only about three weeks ago and will be undergoing hormonal treatment and, unless I find out I can be treated with Denmeade's new therapy, probably with proton radiation treatments over the next few months. Good luck and I hope you find that the road goes on.

  • Thx wood1919

  • I have always been puzzled by patients who receive Zytiga or xtandi but never went on casodex, nilandran or flutamide. These are older androgen deprivation drugs. Ask your doctor about them.

  • I have re:Casodex. He seems to think that the cancer actually begins to use these drugs to survive. I am off all anti-androgen therapy except Lupron

  • Good Morning Lombardi,

    Have you had the Guardant360 genetic blood test? If not, get it, as results may open avenues for new drugs which work at DNA level. Never Give In!

  • Thx. I'll look into that as well.

  • Hi Lombardi, I am sorry to hear your situation. Pleas look into IP-6 , Google it and read all you can.Inexpensive natural supplement which has had some miraculous results.

    Good Luck

    Bill Ash

  • Thx Bill

  • Does ""we have exhausted all FDA approved treatment options " include medical marijuana? Do your oncologists know of the latest research and FDA-approval of cannabinoids as a very effective treatment for cancer, especially when pain is involved? I'm not talking about this internet pot stripped of its THC content, but honest-to-God medical marijuana of the right type for one's individual disease and symptoms, licensed by many states and sold from licensed medical marijuana dispensaries. It boosts apoptosis, boosts any other cancer drugs to they work better and fewer are needed, quell pain better than many opioids and make opioids work better, and unless they are overused do not get you high. After my radiation oncologist's bag of tricks left two terminal patients with two of the most lethal forms of cancer known (one had weeks to live with glioblastoma, the most deadly form of human cancer), he put them on medical marijuana in accordance with the FDA guidelines. They felt better than they had in recent memory for two extra years.

    This research is so new (new data out just this month) that not many oncologists are current on it.

  • Thank you

  • Don't give up - Mike's is also castrate resistance - his last radiation & zytiga brought his PSA & testosterone down - now Provenge - chemo did not work for mike - just don't give up

  • Thx Pennysue1

  • As mentioned by others, take a look at BAT (Bipolar Androgen Therapy) where the patient is given testosterone injections, which for many seems to slow down progression, or for some, reduce PSA to 0.00 effectively 'curing' them (note, very few had such a good response). It seems that the work done so far is in men who are castrate resistant, where all other treatments have failed, or become resistant. For a great summary see: prostatecancerinfolink.net/...

    Also see Len's recent post, might be useful for you to tune in: healthunlocked.com/advanced...

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