Log in
Advanced Prostate Cancer
6,017 members5,773 posts

Failed all gold standard treatments and both Chemos? Whats next?

Hello everyone and sorry we are all here. I wish everyone the best.

I have a question in case someone is in the same situation as myself.

Started with Gleason 4+5 and PSA 108 4years ago. Have failed all gold standard treatments, Lupron, casodex, Zytiga, Xtandi, Taxotere, cabazitaxel,

etc. was about to start Xofigo but then was refused due to mets on the liver.

My PSA is 600 now. I said to the Doctor/Resident at this point "so it looks like I am screwed" and he said looks very much so. I asked if he had any suggestions and he said "I suggest you put your affairs in order"

I have pain in one leg and vomit once a day. I asked him to write me a note and send me to the vet for euthanasia but he said he does not believe in that stuff!.

So is anyone at or been at this stage? and have any useful suggestions?

Thank you for taking the time to read this. I am in Los Angeles..

Best wishes to all. Sinjonn.

53 Replies
oldestnewest

I wish, hope and pray that someone has a great answer sinjonn. I really do.

Jackie

2 likes
Reply

erjlg3 erjlg3l

1 like
Reply

@Erjlge. Thanks. You are always there for everyone.

2 likes
Reply

I see you received some suggestions sinjonn! I hope you're able to try them. There's AMAZING people here! Please keep us posted.

Thank you sinjonn.

Hugs,

Jackie

Reply

@erjlg3 Thanks Jackie, you are probably the kindest person I know, always helping everyone on this board. Can you be my nurse lol.

I am paying attention to all the kind replies from other members and hope something will work out. I will update when I have good news. Thanks again. Sinjonn.

1 like
Reply

Lol. I can mostly only offer my compassion sinjonn. I so much wish I had the knowledge as some do. My husband's friend always says if he gets sick he wants me to care for him ;)

My best wishes.

Jackie

Reply

Find a new doc who can get you into a clinical trial

8 likes
Reply
1 like
Reply

@gusgold. Yes you are right. Thanks.

Reply

Have you done genetic testing to see if you have any gene mutations that would allow targeted treatments?

I also don't see any platinum-based chemos on your list. Typically prostate cancer that goes after your liver has what are called "neuroendocrine characteristics". Those types of cancer cells usually respond to the platinum-based chemos such as Carboplatin and Cisplatin.

The decision to end your life peacefully at a time of your choosing is yours alone and it doesn't matter whether your doctor believes in it or not.

Don't give up hope, you don't know yet whether there are no options available to you. You only have the opinion of your doctor. I would get a least one more opinion, maybe 2 before I would accept your doctor's opinion.

And yes, try to find a clinical trial for something new if you can.

I hope for the best for you, let us know what you find out.

7 likes
Reply

@gregg57 . No genetic testing done.

I will look into that thanks. Then try for a second opinion.

Actually I do get a second opinion everything I go to hospital as it is a teaching hospital but the opinions have no experience behind them as you can see. I see a different doctor/resident every Month!

Thank you very much for the info and I will definitely follow up. Sinjonn.

Reply

I would find someone who specializes in prostate cancer and has a good amount of experience. Your cancer is past the beginner level.

3 likes
Reply

So sorry that you are in such a position. I also have metastatic castrate resistant PCa and while I'm still responding to treatment I sometimes ponder the possibility of physician assisted suicide for the future. Have you considered radium 223 to help address your leg pain? Good luck on whatever you decide.

Reply
Reply

@ronl. Radium 223 is xofigo and you must not have liver Mets. Thanks for advice.

Reply

Sorry, didn't know that. So many names for so few drugs :(

Reply

i'm thinking they have given good advice and concern. i hope there is something that works for you. i am considering suicide towards the end. here in Colorado it takes 2 doctors to sign off on it

Reply

@Joe O'Connell. Thank you for your support.

1 like
Reply

Have you tried Zomenta... infusion for bones? Ray has found that this has stabilized his bones at this stage( didn't help with lungs but docetaxel did). There are side effects, OCJ, but this is manageable.

I will keep you in my prayers,

Carol

Reply

@CAROL2 . Thank you for your advice and support. Sinjonn.

Reply

Singonn.

I would definitely go to a different hospital and meet a new oncologist; someone who specialises in prostate cancer and has a lot of experience as was said here before.

Docetaxol and the other drug you mention are not the only ones. There are these drugs like Carbo Platin that are particularly useful in people with liver mets. Why they are not using that on my husband, who is in your situation with liver mets, I honestly don't know and it makes me angry that they don't.

Look for clinical trials. Maybe you could join some.

But, also, I must say that, if you decide that you have fought enough and that you want it to end, this is understandable and if you want that then your doctor's opinion doesn't matter at all. Nobody can decide when another person has enough.

All the very best, Mel.

Reply

@Melanie Paul. Thank you so much for your support. Sinjonn

Reply

Hi Sinjonn,

I like you am running out of options, Gleason 10, mets to bone diagnosed few years ago.

I have had similar treatments all that have eventually failed.

One treatment I didn't see on your list that I'm currently on (6 treatments so far) scheduled for 3 more is mitoxatrone. It is a chemo by IV and has brought my psa from the 600 range to 48 as of the last treatment and has helped with the chronic pain.

Keep looking and try to stay positive.

2 likes
Reply

I started with Gleason 9 but low PSA. I now have mets in the liver, lungs, bones, and prostate. I am on Degarilx, Taxotere, Carboplatin, and prednisone. This combination is working for me now as scans show the cancer is being contained and markers seem to be going the right way. I hope it continues.

Best wishes,

Richard

Reply

Good Sunday Morning sinjonn,

Dr. Mark Scholz and his group in Marina del Rey treat only prostate cancer patients and they are worth a consultation.

There is a Phase 3 Clinical Trial in LA of Lutetium 177 PSMA which you should consider. It is currently in use in Germany and Australia with some outstanding results.

Never Give In.

Vandy69

3 likes
Reply

Hi Sinjonn,

Vandy69 has given you 2 very good ideas. & a very good motto, at least as long as there are life-extending options remaining--& I believe that there are, for you.

Which teaching hospital is your current care at? If there is one of the national comprehensive cancer centers in LA--UCLA maybe?--that might be a better bet for you, especially if Dr. Scholz is too expensive for you.

Neal

1 like
Reply

@neal_Snyder. Yes you are correct about Dr Scholz being too expensive. I only have full cover Medi_Cal.

This is why I attend LAC/USC but there is no real oncologist to treat you, just residents who cannot go outside the box and certainly no PCA experts. I live in Diamond Bar out east LA County.

Thanks for your help.

Reply

Tanya Dorff,MD is at USC/Norris Cancer Center. She specialises in Genitourinary cancers but the vast majority of her publications are PCa related as well as talks she gives at national oncology meetings. For that reason,I have used her for 2nd opinions. Very smart and takes the time to answer all your questions.

1 like
Reply

@patandemma thanks, I know of her but do not have access to Doctors at Norris. I am on Medi-Cal.

Reply

I second Vandy69's suggestion to contact Dr. Scholz in Marina del Rey. He's at prostateoncology.com Good luck!

1 like
Reply

It is worthwhile visiting that site even if it is impractical, due to location, to enlist their services. What they have to say is very enlightening. Thanks for posting that link.

Reply

They do phone consultations though these are expensive and not covered by most insurance companies. Much cheaper to go in person since that probably would be covered. I live in Colorado and go once a year for an in-person visit & do a phone consultation(s) between physical visits...Don

1 like
Reply

You have not been Gene mapped--you can get results in 2 weeks from Foundation One. Lets find the mutations, and there are now a 1/2 dozen or more PARP Inhibitors, and Checkpoint Inhibitors new to the drug marketplace, though not all approved for PCA, but your Doc. or Docs. can get, them. It does not appear you have Doctor [Oncologist] of Excellence.

I would highly recommend in L.A. Dr. Leibowitz, at Compassion Oncology Medical Group. Even though I live on the East Coast. Tel Number----310-229-3555. He is a proponent of using High Dose Testosterone, and Bat to create positive effects with men in stage 4 Pca.

I am not a Doctor,but for me I would for me start 7X BIRM, which can be obtained on the West Coast. To Find a Telephone number, look at Posts on BIRM here on this Site---Gusgold, offered the Telephone number. On "Where can you Get BIRM"--if you cannot find the number, message me. I have it somewhere.

It is Sunday--1st thing tomorrow--I would call Leibowitz's Office. So 4 things I suggest 1]Gene Mapping 2] New Oncologist 3] extra strength BIRM[7X]. 4] Start a post 'Where I can find a Clinical Trial in my area'---you will get a message from a number of people.

Nalakrats

4 likes
Reply

Good morning Sinjonn, thanks for posting, I have been fighting this since 2011.

I have had fifteen rounds of chemo so far, my Onc Doc says that when my chemo stops working

we will re visit some other meds or chemicals that maybe we didn't try yet or we will try them a different way, he will also help me find a clinical trial. we should all get our affairs in order and prepare for what we know is coming. each day is precious and so are you. keep fighting.

thank you

jack

4 likes
Reply

Jack, That sounds like a good plan, I plan to revisit drugs that worked in the past like xtandi or zytiga, in some cases even estrogens that were used for many years before the new drugs in CRPC

2 likes
Reply

Hey sinjonn,

Remember what Yogi said "It ain't over till it's over"... So keep on kicking ass!!!

j-o-h-n Sunday 08/20/2017 11:27 AM EST

1 like
Reply

There are a couple of trials that might be of interest. One of them uses Radium 223 and immunotherapy and one criteria is both boney and visceral mets be present.

1 like
Reply

Wrando, Do you know which immunotherapy is being used in that trial. or where it is located? Thank you!

Reply

That trial is being conducted at Smillow cancer center in New Haven CT...but I know there are other locations. They are using several of the usual suspects. I believe Atezolizumab is being used.

1 like
Reply

Hallo Sinjonn

You can go for immunotherapy. It will costs you about $75 000.00. That is the first and best option.

I am on Lucrin as a first line treatment. I used the malaria tablet Coartem as a second line treatment with excellent results. Dr Nico Dicks is using just Coartem as a standing alone agent with stunning results. Drink your Artemether/Lumefantrine first as for malaria for a month. Than push it up and drink it according to your weight. You don't need to believe me, believe Prof Henry Lai from the University of Washington. You are welcome to contact me for some tips how to drink the artemether.

I've got the aggressive tubular prostate cancer T4.

Reply

You need *one* oncologist for consistency of care. I can't believe that even a teaching hospital would just have you bounce to difference doctors so often. You are getting good therapies but it doesn't seem like there was a real plan.

Also - the doctor may be helpful in saying to get things in order (we did that as soon as my husband was diagnosed) but otherwise not very helpful at all. Get a new doctor.

Also, I'd recommend getting a palliative care specialist. This is a doctor who specializes in pain management, and can also work with your oncologist to manage your care.

And California does have assisted medical suicide, so that is an option for you, and even if a doctor doesn't personally agree, he/she should help you find someone who can talk to you about it honestly. My husband started at Stage IV and has been fighting for 3-1/2 years, doing fairly well at the moment, but the option to end his own suffering when it gets to that point is so important to him. He has been part of the fight to get a law passed here in Hawai`i.

Please try to get yourself a single doctor who listens to you and gets you, and makes a plan with you. I wish you the best with all of this.

2 likes
Reply

Sinjonn,

A couple of others (above) have mentioned Lu177-PSMA. This may be the right point to consider it. Unfortunately, the U.S. is a few years behind several other countries in its experience with this treatment. One of the guys in our PCa support group just returned from Perth Australia after his first infusion with this agent. Like you, he had been through nearly every conventional Tx, including Keytruda. He was in great pain from dozens of bone mets (PSA 700+), including one in his eye socket that was creating distorted vision. Two days after his Tx the bone pain was essentially gone and his vision was no longer distorted in the eye with the met. He was treated by Theranostics Australia (Dr Nat Lenzo). theranostics.com.au/lutetiu...

Of course this isn't a curative therapy, and it isn't applicable to everyone with PCa. But most PCa patients will have sufficient PSMA on the surface of their PCa cells to make the therapy worth a try (PSMA expression is checked before the Lu177-PSMA infusion is administered). Importantly, this agent works on both bone and soft tissue mets; also reportedly will treat NE PCa. The treatment is expensive and would likely not be covered by insurance if done outside of the U.S. Theranostics Australia charges about US$9000 for one round of therapy, plus travel expenses ($1100 for Ga68-PSMA pre-treatment scan + $8000 for infusion/post-treatment care). Four rounds of therapy are often recommended; the guy in our support group will be returning for his second round in two months.

1 like
Reply

Like others suggested, in Southern California, Dr. Mark Scholz (Marina Del Rey) or Dr. Christopher Kane (UCSD). Also contact CureMatch in San Diego which will create personalized cancer therapy using technology from UCSD Moores Cancer Center and the Supercomputer Center. Take a look at CureMatch website. They will work with whatever onconolgist you choose.

Reply

Be sure and make contact with these people at Keck. internalmedicine.usc.edu/sp...

Reply

@gourd_dancer. Ok I will try and see. Hope I do not get to see same residents as I do now as that's where they come from to run the oncology clinic at USC.

Most of them are haematologists armed with an iPhone to answer questions. Worth a try. Thanks.

Reply

Praying for you.

Reply

“Oh Papa, My heart’s broke.” That’s from “A Day No Pigs Would Die” which my husband taught to middle schoolers. We have no medical advice to offer just holding you close in our hearts with everyone who has already written. Jan—and Les

P.S. I’m sorry we are all here too!

Reply

My prayers are with you 🙏🏻. Have you changed your diet? Tried supplements?

Reply

My husband is beginning a new trial with. KPT 8602 at vanderbilt ingram cancer center. You might contact their Trial to see if possible to be included. Also Sara Cannon Cancer clinic - also in nashville,tn. KPT 8602 is being held in several locations. But only 100 participants.

Reply

Dr.Scholz will be at the PCRI Conferenve at LAX Mariott in September. Well worth it.

pcri.org/2017-conference/

Reply

@martingugino... I already have my ticket thanks. See you there.

1 like
Reply

my father is at this stage.clinical trail at Weill Cornell medicine,lu177-psma617 week4 psa was 940 now 425 and going down. DENIS

1 like
Reply

@deniskulick.. thank you for the info. I hope it continues to work for him.

I will check it out.

Reply

You may also like...