Stage four very aggressive prostate cancer

Hi all. Any advice would be great. My dad is 65. Diagnosed very suddenly last august with very aggressive stage four prostate cancer. In the bones and lymphnodes. His psa was just under 1000. Gleason is 9. He did chemo doxtaxcel and injection of firmagon. His psa eventually went down to 60. But began rising slowly again a few months after chemo was over. Switched him to Lupron and Zytiga. Four weeks in and his psa has doubled in that time. Two weeks ago it was at 184. They will take his psa this week to see if the zytiga has kicked in but the dr didn't seem hopeful given the doubling during the first four weeks. If it rises again we are looking at 1) a different chemo 2) liquid radiation or 3) clinical trial. We are at memorial Sloan Kettering. Dr seemed most hopeful re clinical trial route given my dads age and aggressive cancer. Seems like the other option have low success given the aggressiveness of it. Does anyone have any thoughts? He's tired, in pain and has lost 32 pounds since march despite eating. He wants to fight though. Will a clinical trial just take him out completely? Anyone in a trial with similar issues at Sloan? Liquid radiation? Another chemo? Any thoughts appreciated I don't want him to give up but I want him to enjoy his life if life is short. Prognosis doesn't seem great given everything I've read,..

21 Replies

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  • Sorry to hear about your situation, but glad you found this group.

    I'm not a doctor, but I can offer my opinion.

    With this kind of aggressive cancer that has not responded well to treatment, I would strongly recommend having genetic testing done to see exactly what your dealing with. There are certain mutations such as BRCA 1 and 2 that allow targeted treatments that exploit the mutations.

    If the cancer has neuroendocrine cells (no androgen receptors), platinum based chemotherapy such as Carboplatin can be effective along with the second line chemo agent Jevtana.

    My advice would be to act quickly considering the aggressive nature of this cancer.

    Good luck with treatment and keep us posted. Sloan has a great reputation so I think he is in good hands.

  • Thank you so much! We are seeing the doctor this week and I will ask about everything you just said. ( I go to all the appts so it won't be strange for me to do so). I'm so worried bc all I've read seem to give him two years if he is lucky. I don't want him to be subject to a painful treatment if we are looking at less than a year left of life. But he wants to fight. And he doesn't want to know the prognosis. The dr is vague about what that is anyway. We are very shocked and lost right now. He's on so much morphine for his pain. How painful is the chemo you suggested? He had a terrible time on doxtaxcel. I appreciate your help.

  • From what I understand Jevatana is similar in side effects to Docetaxel, but I can't speak from experience. I'm taking Docetaxel and tolerating it fairly well, which is typical. I will take my 6th cycle in around 1 week. I've heard that Carboplatin side effects are a bit more difficult, but much better than the platinum-based chemotherapy Cisplatin.

    As far as the Radium 223 (Xoifigo), that works well for reducing pain and does kill the cancer, but only in the bones. The short range alpha particles it emits don't do any damage beyond the areas with bone mets where they deposit. Radium 223 has also proven to extend life expectancy.

  • And yes, do find about any clinical trials that he may qualify for.

  • Thank you again And good luck to you!!!

  • Here's an article about gene mutations in prostate cancer:

    nature.com/articles/s41598-...

    An example of a targeted treatment is the use of PARP inhibitors. According to the article:

    "A high response rate to the PARP inhibitor olaparib has been reported in patients with either somatic or germline mutations in BRCA2, ATM or other genes involved in HR repair"

  • Go for the clinical trial as the best option ... hope you have success

  • Thank you

  • This link is to a Search that recently shows 17 Clinical Trials at MSKCC for advanced Prostate Cancer.

    You can browse through them, search on-line for related data, and then talk more specifically about any of your questions, concerns, or "options" with the MSKCC doctor(s) before deciding.

    mskcc.org/cancer-care/clini...

    Charles

  • I will. Thank you for taking the time to look for this

  • Hallo Patriap

    I am very much the same as your dad.

    Gleeson Score 8, black spot on the pelvis, PSA 901 February 2016.

    Tubular Prostate Cancer, much faster and more aggressive than PC3.

    With a difference. I reacted very well on Lucrin (Lupron) and the malaria tablet Coartem as second line treatment. Coartem is a combination of Artemether and Lumefantrine.

    15 months later the PSA was 0.23. I stopped all treatment just to give my joints and axles a breather to bent. My PSA is now on 7 and I started this week again with Lucrin.

    But I do want to agree with Gregg57. The cancer cell line must in this case be established and now time to hang around. Because you can take all the normal prostate cancer treatment available, but if your dad's cancer is not hormone driven, it will not help.

    I also agree with the other comments on clinical trials. It will save you a lot of money, specially if they can put him on immune therapy.

    Kind Regards

    Thinus Coetzee

  • Very interesting to hear about taking the malaria medication, Coartem .. was this prescribed by a physician?

  • I discussed it with my oncologist. He didn't prescribed it but gave me the green light to do it and just asked to keep him up to date with the results. My GP is also very surprised that I am out of phase 4. I am going for this new MRI scan on 29 January. Will put up my results here.

  • Where did you get the idea that Coartem might have a positive effect? Do you know of others with this experience?

  • There are various publications on the internet by Universities that is doing research on the use of Artemether. I by chance read an article on News24.com in 2014 of this professor that claim he can cure lung cancer in a very short time with artemether. And than I forgot about. Two years later I was folded up under a severe attack of tubular prostate cancer. I was in the bushes of South Sadan. They manage to stabilized me in a small UN hospital. Two weeks later I was in South Africa where I was diagnosed phase 4. I couldn't speak. When I started talking, I started to cough. My oncologist immediately put me on Lucrin. The next night I read about artemether on the internet and start reading a lot about it. Why Coartem. There is a patent registration in the US about this. Type into Google: Lumefantrine Patent. It is written a little bit hi-tech, but you will understand why a combination works better.

  • Thank you. Looking forward to your update on 29 January - wishing you all the best!

  • weillcornellgucancer.org/20...

    Hi,

    My Dad was in a very similar situation. Otherwise heathy 64 year old diagnosed with extensive metastic prostate cancer in bones and lymph nodes. Gleason 8, but based on genetic testing very very bad cancer as my Dads doctor put it. He wasn't expected to be around now. It's been almost 1.5 years since he's diagnosis and he is doing well. He started and continues to be on Lupron. He had Chemo at initial diagnosis as well as Provenge, which was covered by Medicare even though he was not castrate resistant at the time. What has saved his life is the treatment above and another more experimental isotope treatment he received in Germany. He went through Johns Hopkins to learn about this treatment. Of course, it is into covered by insurance. But, read the article and then google more about it. The clinic in Germany he went to has a website as well. His lymph nodes are not detectable on a regular scans and half of his bone mets have healed. The best outcome we could have hoped for his doctors said. I am so sorry you are going through this, it is a difficult road, but he is lucky to have you!

  • My husband tried jevtana when the taxotere failed .he needed IV fluids after for days .then they tried xofigo .it cured his pain after having some increased pain from the infections but it depleted his blood levels and he couldn't fight any longer..we also did the genetic testing .i wish you well .everyday is a gift . Keep trying .never give up hope .clinical trials are a guess .they may save someone's life someday or yours thru the trial ..it's a hard decision ..comfort is important to get thru the day ..fluids and protein will help .small freq meals ..thinking of you ..

  • MSKCC is a great hospital to fight for your father's health.

    Good Luck and Good Health to your Dad and to all his family and friends.

    j-o-h-n Monday 07/24/2017 12:48 PM EST

  • Hi - I am in a similar situation - Stage 4, mets to lymph nodes, but not to bones yet....XTANDI and LUPRON worked well for 2 years then PSA went up to 20...started ZYTIGA 6 months ago but didn't work......stopped it.....tried PROVENGE but needed a catheter in chest to extract my blood for immunotherapy, but then developed a blood infection from contaminated catheter...catheter removed, stopped PROVENGE treatment....don't want to try that catheter routine again....doc put me on KETOCONAZOLE as a long shot, and said go to Sloan Kettering in NYC...went there 4 days ago (July 27 2017) and they agreed to put me into a clinical trial - no name for drug yet, but it's trial AZD8186...will take 4-6 weeks to get all approvals done...then I go to Sloan in NYC once or twice a week initially for tests and consults.....involves pills.....no placebo.....call me for more info: Ron 203-767-1123 ....good luck to all...

  • We have a support group for men with metastatic PC like your Dad. Meets in NYC on the first and third Thursday of each month. Go to CancerABCs.org then to the calendar for specific information about the groups

    Joel

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