I've been been lurking and learning for quite some time. No need for a question until now. My lack of basic information is explained in my profile. I have been treated with Erleda, Taxotere, Zytega, and Jevtana to no avail. My MO finally decided to do a CT scan with contrast solution and lo and behold, my liver is permeated with an aggressive prostate cancer with no useful mutations. He put me on Taxol with Carboplatin. After three weekly treatments, My PSA has gone from 153.77 to 314.25 and my MO wants me to back off treatments and curl up and die, I guess. He told me that there is nothing more that he can do. I haven't heard much about liver invasion on here but, it has to be bad. When I mention it to medical personnel, the response is usually, I'm sorry. I feel like I'm being kicked out into the cold with no parting advice. To be fair, at least, not yet. Does any body have any QOL advice to make this more tolerable as I slip away?
Out of options.: I've been been... - Advanced Prostate...
Out of options.
You might double-check SOC options in Chapter 8 of the NCCN Guidelines, and discuss them with your MO.
nccn.org/patients/guideline...
You might consider a referral to a center of more expertise, such as MSKCC in New York, or perhaps somewhere in Boston, and get a second opinion as to options. They may also offer some type of Clinical Trial for your consideration.
If you might like some other general end-of-life or palliative/hospice care preliminary thoughts and learning/referral assistance, some of us here might help with various aspects of that, too.
I have a phone conference set up with Dr. Pomerantz at Dana-Farber tomorrow. I have met with him before and was impressed. Will see what he has to say.
Mark is they way to go. Hes has gotten me through 7 years so far. His team is terrific
Yes, I read about your sinus cavity fiasco and I guess that the radiation worked out for you. With luck, he will come up with something.
If you continue to consult with Dana-Farber, you might help prepare yourself for questions during consultations by first reviewing the list of prostate cancer Clinical Trials that Dana-Farber is running. Most, of course, will not apply to your specific individual situation, but you can at least be aware of a few that might be a "match" for your and your doctor's consideration. Here's a link.
dana-farber.org/clinical-tr...
Thank you. I just had a consultation with Dr. Pomerantz and he had some options for me. Things are less bleak for now. He said that there are no trials that I qualify for right now but, I should keep checking.
A couple of guys I know said an older chemo, Mitoxantrone, helped their QOL when all else failed.
There's a CAR-T trial that doesn't depend on PSMA:clinicaltrials.gov/ct2/show...
There's a Ac-225-hK2 trial that might work if it expresses PSA:
clinicaltrials.gov/ct2/show...
Thank you TA. I will read these when I get my act together today. You always have something good to add.
Hello OutoftimeonSOC
If you feel you've run out of SOC options then perhaps you might consider some supplements that are relatively inexpensive and non toxic which I've been using myself for 4 years.
If you click on my avatar picture you’ll be able to read my bio and some posts I started.
You might also be interested in this PUB MED case report. It's about a terminal pancreatic cancer patient who had to stop his chemo due to treatment intolerance and started taking two supplements instead.
Unresectable Pancreatic Adenocarcinoma: Eight Years Later:
ncbi.nlm.nih.gov/pmc/articl...
I know that article is about pancreatic cancer and not prostate cancer, but if there's anything that "might" be able to help with that truly dreadful disease then it just might be worth trying for advanced prostate cancer too.
One of the supplements that patient took was Essiac which is an old herbal remedy that's been around for almost a hundred years.
I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac is effective, but I've been taking Essiac together with CBD oil for 4 years and am very happy with my results so far.
When I stopped all conventional treatment in early 2017 due to severe side effects my oncologist predicted my PSA would keep continually rising and my mets would continue to spread.
However, 4 years later my PSA is almost the same as when I was diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my 2016 PSMA PET CT scan.
Here's a link to the post I started on this forum about my own cancer journey.
healthunlocked.com/advanced....
Best wishes for 2021.
Dave
I support what Davek's idea is...When SOC can not help ..Go to Non SOC treatments.Dr. Mark Sholtz in one of his videos said that he had a patient who was sent home for hospice because no SOC treatment was able to control his PSA.
After 6 months, He called and wanted to see Dr Sholtz. When he met the Doctor, he told him that he was eating 70 grams of Raw Ginger every day and is feeling much better. His PSA dropped by almost 50%. This result may not happen in every man. I am using this example to make a point that things are possible even when mainstream treatments fail.
Its not over.. Until its really over.
If I had the way.. I would change your screen name from "out of time" to "May have more time"
I was pessimistic about SOC when I just changed my screen name. I'm only allowed one more change. I'm willing to try most anything at this point just to get enough energy to function normally. It's humbling to get advice from the top contributors. And yes, Yogi Berra was right.
You are a magnificent soul because even in such difficult time in life ..you can express gratitute. Wish you best of luck.
Thanks Dave. I actually brewed and consumed Essiac tea when my local hospital team was hemming and hawing about how to handle my double cancers. It was from Canada and contained sorrel but not sorrel root. There seems to be a lot of variations of the formula. I will read your links later today.
I saw where Swanson makes its own Essaic supplement, which adds four other ingredients to the original four. I decided to try it and started recently. I may make the tea down the line.
You didn't mention xtandi. If I were you I would switch from Xaralto to another blood thinner and try xtandi. Xaralto is incompatible xtandi.
I have never been on Xtandi so, I guess that I am OK.
Why not try Xtandi? It is a very good ADT.
Actually, that was my MO's description. I will ask for the pathology report on Wednesday. Other than the liver biopsy, the only test I had for gene mutations was a liquid biopsy which I never heard the results of due to the liver issue.
I will be seeing the nurse practitioner this Wednesday and she is easy to deal with so, I will seek out as much of this information that I can. I have lots of blood test results on my portal so I can check that. Yes, it did bug me that my MO said that the liquid biopsy results didn't matter and just brushed it off.
I would like to explain my mental state to all of you. After the four failed treatments, in a short time I had developed a low grade fever that nobody could figure out, loss of appetite, and severe lower back and spine pain. 4000mg of Tylenol a day could keep the lower back pain in check but, only Oxycodone would touch the spine pain. I only took that for two days because I prefer to avoid it. After weeks of this, I was so miserable that I didn't care if I lived or not. After my first infusion of Taxol and Carboplatin, in two days, all pain went away, my appetite was back and I felt great. I even had physical energy. It felt like this is it. So being blindsided after the third infusion with the announcement that this isn't doing what it should and I should think about backing off treatment was quite a shock. That's when I decided to reach out to the wonderful people on this forum that have been through so much and are willing to help strangers. Joining this group is one of the smartest things that I have done. Thank you for giving me hope.
When my disease burden got really high with a PSA of 3000 I started getting a similar pain with fevers and night sweats. An MR T and L spine with contrast showed countless bone infarcts. Neither of my 2 MO’s can 💯 tell me whether this from Xgeva or from cancer cells clogging the small vessels supplying those areas.
Good morning Cleod,
I have tons of back pain also and wonder the same thing, if the Xtandi (47 months) is causing the pain, or if its the effects from the Xtandi/Lupron causing muscle atrophy. Lots of pain meds these days and getting worse.
Wow, my female partner is sort of like that. I probably need to ask more questions. He usually listens to me but this last visit really threw me off.
If it increased QOL and killed pain, who cares if it's doing what it should do??...
Thank you kind Sir. I haven't been cut off and, as you can tell, I am seeking alternatives.
Hi mate, I'm in a very similar spot, but a little further down the line than you I'm thinking. I'm currently pursuing Lutetium and will be having a psma scan tomorrow to assess my elegibility. Also finding that my current liver enzyme levels are going to exclude me from most trials so maybe that might be the same for you at the moment, hence trying the Lutetium. I've had previous radiation to the liver also with good but short lived results, you may want to look at that. Also had a treatment called SIRT where they implant radioactive beads into the liver, may work for you depending on tumor size etc.Nalakrats is the man to talk to about supplements etc.
Hope something works for you
Never give in there warrior, when one says no that just gives you a chance to try something else. Have a friend that did the freezing of the blood treatment. He’s 5 years past the death sentence. Hang in there warrior 🙏🙏🙏
It is as if you are being treated like - cattle - PERHAPS it is the only way this 'doctor / whatever' has as a message to communicate to you - BUT perhaps you are dealing with a ' doctor / whatever ' who really has no business treating people at all.
Assuming he / she is sincere in delivering the message - 'nothing to be done here - now go away ' - I most certainly would NOT want to be within 50 miles of that 'heartless excuse of a professional (&%$#^* '.
A BETTER way to deal with a situation like this one would be - I am sorry to inform you that there are VERY limited options available to you (assuming THIS 'pro' is knowledgeable and you KNOW they are reputable and you can TRUST that all options are exhausted) but we can explore the best options left at this piont in time in the progression of your disease.
IF there are ANY options left to TRY, then you should be given that 'chance' to 'beat the 'estimated' time you MIGHT have left.
IF they are 'right' (and you believe them) , then at least you will know that you need to make final arrangements and ask for some palliative care to minimize any pain and undue suffering you might experience.
But pointing you to the EXIT sign lacks so much, I'd be livid dealing with THIS type of individual.
Unfortunately, we read about a FEW doctors / so called pros within these forums that are so lacking in human skills that you wonder HOW they got to be where they are today.
Don't give up yet - a second opinion and a different action plan sounds like your next move IMO ....
Wishing you the best on your journey .....
Well, I did tell him not to pull any punches but, that wasn't quite what I had in mind. I just have to press forward and plan my next moves.
Greetings "Out of time on Soc"....Maybe you need a new battery....that's what I use when my watch is out of time... We are glad you're here so just pull up a chair, sit down and post...change your userID to 'IthoughtIwasoutoftimeonsocuntilibecameahumember.'...
Opps an obscene word accidentaly included.....
Good Luck, Good Health and Humor.
j-o-h-n Tuesday 01/19/2021 7:41 PM EST
To those of you following this thread. Things are much improved. After a phone consultation with Dr. Mark Pomerantz, my situation is much better. I haven't been kicked to the curb, and there are more options. I will do one more cycle of my present mix to see if liver improves. If not, I will be swapped to a different mix that could do a better job on the liver. More options after that. Dr. Pomerantz and my MO are corroborating and he says that I have a good oncologist. I really didn't mean to throw him under the bus but, my emotions are not as stable as I would like them to be. He's not a monster or egotist and who knows how his day was going. Time to move forward plus, I have plenty of information at hand now.
hi OutoftimeonSOC ... i'm so sorry to read about what's happening with you ... you may want to take a look at envita.com ... best wishes ... Nous 
Have you read Dr. Shamsuddin’s book on cancer treatment titled “IP6 and Inositol “ available from Amazon? He is a professor of pathology at the University of Maryland medical school. In his early years he specialized in colon cancer but the extensive research on IP6 has led to its application in many areas of cancer. Please consider an IP6 regimen. It is sold over the counter. There is a little incentive for big Pharma to manufacture drugs using IP6 as it is naturally sourced (inside Brown rice husks).Dr. Shamsuddin has been a consultant to China where liver cancer is far more common than in the United States due to hepatitis. He is accessible through the email system of the University of Maryland medical school. My previous posts may be helpful.
I was aware of that combination but, have not read the book.
I haven't forgotten about you. I have the information but, it's in a read-only pdf. I'm sure that I can figure out a work around but, my daughter is here from Rhode Island for the weekend. She gets priority one as my future is uncertain. No chemo this week and I luckily got a blood transfusion.
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