Hi, Looking for some communal input from this knowledgeable forum. First, some bullet point history to help fine tune the responses:
• I was diagnosed with advanced stage, mPC in mid-2020. I have a rare type of PC that does not exhibit elevated PSA. It’s very aggressive and difficult to treat. My PSA never got above 4.0 at its highest and when I became ADT resistant, PSA remained at .01, even though my already prolific metastases increased and spread in volume dramatically. (My PCP had ignored my severe symptoms because my PSA was normal and I was “the healthiest patient in his practice,” so he strongly discouraged me from seeing a specialist. Months of antibiotics and Flomax passed, and when I could no longer pee at all, I went to a urologist just before my kidneys shut down.) I now have an experienced, top notch medical team in multiple states, but all have indicated that they have little or no experience in dealing with this “no PSA” type of PC.
• Went on Firmagon + Erleada, then Lupron + Erleada and finally switched to Orgovyx + Erleada at my request. This worked for almost 15 months and then I became ADT resistant.
• Late 2021, pelvic areas were treated with very high dose SBRT based on results of the SABR-COMET trial. It appeared to have worked very well against the pelvic cancer, but with understandable and expected long term side effects. Unfortunately, post treatment scans indicated that while undergoing SBRT, the cancer mutated again and moved in a big way into my lungs and liver.
• Underwent 8 rounds of Docetaxel + Carboplatin and then Cabazitaxol with no apparent effect on the cancer.
• Underwent 3 rounds of Lu-177 with no effect on the cancer.
• Regular genetic testing from Foundation One, Amgen and Tempus indicate a rare mutation with no viable options for any type of immunotherapy.
I have been taken off all cancer treatments now. We still have a couple things we’re looking into, but the goal is to buy me a little more QoL time to tie up some remaining loose ends and try and pursue a dignified death solution in Oregon or Canada. Though individual responses vary, the Lu-177 kicked my butt and were much worse than the side effects from chemotherapy, SBRT and ADT. So, we are totally not interested in anything that will make me feel any worse, but hopefully allow me time to recover from the extreme sickness and weakness from the Lu-177, so that I can more comfortably travel to Oregon or Canada.
I’m interested in your opinions on anything we have not considered. Thank you so much for your time.
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Blue6199
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Sorry to hear about your situation, I don't think I'm far behind you as far as time frame goes.
I'll let others comment on possible treatment options, but since you mentioned death with dignity I'll share what I learned as I've been researching that lately.
I think it makes sense to do what you are doing and start planning and looking into your end-of-life options rather than chase after treatments that aren't working and may end up trapping you in a situation where you can't exercise your options. I figure Pluvicto will probably buy me enough time to get some more things ready and loose ends tied up before thing start going downhill.
I live in California and we have death with dignity here as does Oregon. The problem with Cananda is you have to be a resident and under their nationalized health care system as far as I know. I believe that Oregon has lifted their residency requirement and if so would make it the only US state you could travel to for the services.
The disadvantage with the US laws are that they require you to be within 6 months of death and that means you can't even start the process until then. So a lot of people don't get much relief in the end. I know 2 of the spouses of men who've done it.
I'm working on a backup plan and that's to go to Switzerland for the medical aid in dying. There are 2 organizations there, Dignitas and Pegasos. The big advantage is that I can start working on getting approved now (which I have started), before things get worse and start limiting my abilities. The biggest advantage is they don't require you to be within 6 months of death, just that you have a terminal illness. You have to show them some basic documentation of your medical condition, but none of this 2 doctors signing off and other red tape. Once you are approved, you can just decide if/when you want the service, schedule it and then go. They also provide cremation services, the whole thing is around $10K if you use the medical aid in dying service, joining the organization costs $200 swiss francs (around 200 USD).
You can also have IV infusion there vs having to swallow a bunch of really nasty tasting liquid that requires you to take antiemetic meds. The disadvantages are cost and travel. For me, the money is not a problem so it may be the way I go.
Thank you so much for the excellent information Ed! I have 2 local oncologists that said they would certainly attest to less than 6 mos for me. Of course, it's the Oregon docs that have to produce the 1st and 2nd opinions. It has been hard to get information about Oregon. Namely, doctors that will provide the service. I think Switzerland is doable if I become strong enough to travel. The IV method certainly sounds better than the ingestible for many reasons. Too bad this isn't like the classic 1973 dystopian epic "Soylant Green." Then the service would be free, and in the end, I would be transformed into a tasty and nutritious snack treat. 🙂 All the best, and let me know if I can help you in any way with my experiences.
Thanks. I'd like to stay in touch with you through Private Messaging if you don't mind as we both pursue the available options. As you said, it's hard to get information so I would love to compare notes with you.
I just got the ball rolling with Dignitas in Switzerland so I can share my experiences with that process as I go along. I should hear back from them soon. The cost to get started is only $200 so I figure it's another iron in the fire and something I can do now which is a big deal for me. I'm afraid that they are going to tell me I have a year left or more when I run out of options, not 6 months and my fear is that it will not be a good year. We've suffered enough with this terrible disease, time to give ourselves the luxury that is usually only afforded to pets.
I'm kind of surprised they gave you Pluvicto. Usually,these low PSA-expressing PCas either do not have a lot of PSMA expression (which causes a lot of toxicity from the Pluvicto) or there is also "discordant" expression of a non-PSMA subtype. Many nuclear medicine specialists now recommend getting an FDG PET scan too to check for the discordance.
Assuming your cancer is low-PSA and not neuroendocrine it may exhibit certain features that may make it vulnerable. If it expresses a protein called DLL-3, there are a few clinical trials of therapies targeted to it that you may want to investigate:
Thank you so much for the kind words and excellent information Tall Allen! Interestingly enough, My Athens, Ga. Mo and RO were visibly giddy when they looked at my PSMA PET and my Axumin PET. They reported that I had (paraphrasing) 'one of the strongest PSMA signatures they had seen and it lined up perfectly with the Axumin scan.' So, I looked like an excellent candidate. I felt early on that it wasn't working and pressed the issue at the third infusion. They did a CT and MRI and the results surprised everyone (except me.) It hasn't turned neuroendocrine yet.
I appreciate the clarification. The problem is that all my cancer is worsening in the liver and lungs. All the stuff that was there before Lu-177 has more than doubled in size since and there are new lesions. In addition, the cancer has moved into my lymph nodes for the very first time. Michael Stipe is full retired from music at this point. He focuses on his visual art now.
Thank you for the words of encouragement John. I'm now 59 and was being treated mostly in the metro Atlanta area and in Athens, Ga for the Pluvicto. I have also been to MD Anderson and Houston Methodist for second opinions. We are traveling to U of Minnesota in the near future as well.
I'm so very sorry you're turning out to be a very special patient indeed. I hope all the suggestions provided by the folks on here are a solution of some kind. to your special circumstances. Our MO in SC just recommended we travel to Athens, GA (UCBC) for Pluvicto. We've met with Dr. Armstrong at Duke, but their waiting list is 2 months for the treatment. We'd rather get it sooner than later of course and we were surprised at the referral to Athens. Did you get your Pluvicto at UCBC and do you recommend? My very best wishes that you find a treatment that works for you. ❤️
Thank you Loudlibrarian! Yes, I heartily recommend UCBC. Dr. Nikolinakos (MO) and Dr. Steeber (RO) are awesome. The entire staff from top to bottom is very compassionate and patient focused. Happy to answer any additional questions that you may have. Best of luck!
Thanks so much and happy for the positive feedback. We’re seeing Dr. Bodine. Our MO in SC is a hematologist as is Dr. Bodine so I suspect that’s where the connection for the referral came from. My husband is NED from liver cancer in 2018, but this blasted cancer is another animal entirely. Good luck to you too.
I get treated by Dr Himisha Beltran at Dana-Farber, Boston. She is a world leader on neuroendocrine prostate cancer and has discovered a couple of new types of PCa.
Her group can be reached at six-one-seven, six-three-two, three-four-six-six.
Dr Beltran deals almost exclusively with advanced prostate cancer. I honestly believe that if there is anything possible, she will know of it. I guess that I trust her with my life. 😀
Sounds like you're from another planet. Did you ever have a biopsy and did you get a Gleason Score? My advice, (I'm not a doctor, so take it with a grain of salt, if you wish), is that you need to get into alternative therapies. Did you know that intense consumption of lycopenes might increase your t-cells and fight the cancer with your own immune system? Also, heat kills all cancer cells, so consider regular use of a sauna? Let me know if you are interested. and Ill clarify.
Why would anyone listen to this advice. Please clue me in to clinical trials demonstrating the effectiveness of lycopene, sauna, etc. I wonder who is the real space cadet?
As for lycopenes effectiveness , there have been many studies. For example: Lycopene has been found to effectively suppress the progression and proliferation, arrest in-cell cycle, and induce apoptosis of prostate cancer cells in both in-vivo and in-vitro conditions. pubmed.ncbi.nlm.nih.gov/327...
If you wish to ignore these it is of course your perogative. I simply have tried them and found them effective in my personal situation and think others might benefit from them as well. Blue6199 asked for opinions.
Nothing wrong with using a sauna or hot tub for comfort of someone is otherwise healthy, but there is NO HOME METHOD of thermal treatment approved by the FDA for treating cancer, including hot showers, hot tubs, heating pads, soldering irons, or steam rooms/saunas.
Thermal treatment requires prolonged direct exposure to temps up to 113°. Temps over 104° in hot tubs and baths is dangerous and temps approaching 120° can scald skin.
I would urge Blue6199 to exercise caution before following this kind of non-SOC treatment ideas.
Yes, we've done two prostate tissue biopsies and one liver biopsy. The liver biopsy revealed that histologically the cancer has mutated into something unidentifiable. It has mutually exclusive traits that defy current labeling methods. A weird combination of upper GI, lower GI, hepato-biliary, breast, lung and prostate cancers. Some of these potential origins have been ruled out, so they decided to conclude that this all somehow originated from the original prostate cancer.
WOW!!! one devise that I began using a month ago is infopathy.com this can help your body with your body. Also please consider a parasite and fungal clenz
”I was diagnosed with advanced stage, mPC in mid-2020. I have a rare type of PC that does not exhibit elevated PSA. It’s very aggressive and difficult to treat. My PSA never got above 4.0 at its highest.”
Sounds similar to my cancer. PSA never went above 1.0 from the cancer itself, despite spread to spine, hips, tail bone, and everything in my urinary tract .
A biopsy of my bone mets showed they were PSA-Negative, and a hint of colon cancer-like cells.
Cancer is “ductal type”…is that what yours is?
I feel for you and respect the decision to determine your own end; I plan on the same when it gets that far.
Wish I had more to offer than best wishes and moral support.
I’d second the suggestion to get in touch with Tanya Dorff at City of Hope. Top notch doc doing some exciting research as mentioned by Tango65
I second the Tanya Dorff referral assuming you blood counts are all okay for trial. We were headed that route but blood counts were prohibitive post LU177. The car-t trial we were looking into was very intense sounding. She does not do out of state appointments however, and we had to travel to her.
You’ve been through a lot as had my guy. I applaud that you are looking to tie things up best you can and get some QoL. My guy NEVER stopped pursing treatments and really did NOT tie up his loose ends enough. I think doing more that way would have felt like giving up to him. It made it a bit hard for everyone else. He really never succumbed to the fact that he was dying. He did it his way and that’s okay.
May you find some joy and QoL doing things however you see fit. These are your choices. I see stopping treatment just as heroic as throwing everything under the sun at it.
You might just surprise yourself how much longevity and QoL you get. Best wishes in your journey.
Zengal79 you are too sweet! Yes, it is a persnonal choice and I think that there is no right or wrong answer. I am very sorry for your loss and I applaud you for being an engaged caregiver and remaining with HealthUnlocked to continue to help others.
welcome Blue6199! How old are you Sir? I too had an aggressive low Psa pc ..I shut down in k failure and got diagnosed after a week in the icu …I was 53 then now im 61 . Tubes in the back and a foley then internal stents for a total of two years of hell . . I did imrt Lupron and a test adt drug that’s now halted . I stopped that drug 8 months ago . sometimes there is no rhyme or reason to who responds to a certain treatment or not? You ve run a gauntlet of treatments so far .. We are told NO CURE for #4! Somehow I’ve squeezed past death for 8 yrs now .. I did bi weekLy vitamin c-ivs w/ Laetrile for my first year. Spent my savings on alt treatments and I think it helped? After imrt I went into remission . The doc and most everyone wrote me off! Gave me 36 months top ,no matter what I did . Sure , there will be a point for us all that we either pass of something else like the heart or the pc ends us . I don’t want end stage pc . I too will start looking for a better way out when it’s my time . It is not really giving up ,it’s just stopping alot of the pain for us and anyone that loves us . May we all receive mercy ! Take care. Scott
Scott, Thank you so much for the kind words, advice and sharing your inspirational story! Yes, everyone's PC is different. Even PC within and individual can have a variety of different characteristics and responses. I do think the death with dignity option would be best for me, my family and the healthcare system. I've taxed them enough, such that I feel no need to cost them a fortune to keep my heart beating that last 4 - 6 weeks when I really don't want to be here at all. Thus far, when I have had severe cancer pain, it has not been controllable at all with pain meds, no matter how strong. And in some circumstances, I definitely have a "win at all cost" mentality. So, I like the idea of killing my cancer and dragging it down to Hades with me regardless of the personal sacrifice. I can live without my cancer. My cancer can't live without me.🙂 All the best to you and cheers on your continued remission.
So sorry about your situation and I don’t have any words of wisdom but did want to flag the work on vaccines that is being undertaken does seem to be ramping up here in the uk
I volunteered for the OVM-200 vaccine under a phase 1 clinical trial as my disease is currently stable so I qualified.
With big companies that Bio/n-tech teaming up with the UK Govt it may be worth looking for vaccine clinical trials ?
I had been watching AMG-509 posts on here as the infusions seemed to work for some when all hope was lost but the threads disappeared ( the results were mixed but there did appear to be some super responders)
Sorry I can’t think of anything else I’ve read/ experienced and I wish you all the best.
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LU 177
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