Hope you can help out here. Feeling a bit down after today’s consultation.
Diagnosed in Aug 2016. Gl 8/9 PSA 7. Spread to local lymph nodes and pelvis. Since spread to lower spine and having radiotherapy now because it’s pressing on nerve endings. I am on 3 mthly lupron and had early docetaxel in Nov 2016 to Jan 2017 PSA dropped to 0.9 . PSA increased in March 2018 to 4 so added enzalutamide. This didn’t really work so started cabizataxel in Sept 2018 til Apr 2019. Mets on spine have Increased causing pain so now means I’m having radiotherapy as stated earlier. PSA now 21. Onc would like to use R223 but cannot until radiotherapy taken its course which will take at least a month. We are having a CT scan to see if there’s any more soft tissue mets anywhere (liver lungs etc ). If there is my Onc is suggesting there’s no point doing R223 and not much more that can be done apart from palliative care. Surely there must be something out there?
I have asked about Apalutamide and Daralutamide and been told these are variations on enzalutamide so won’t work. Also been told there’s no point doing chemo again. 😢
Any advice greatly appreciated.
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JP63
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The MATCH trial at NCI will do some of that testing for free and put you in an appropriate trial--in 1175 locations--possibly close to you...see below:
There is also ARV 110 trial using a new androgen receptor degrader which looks promising...As previously mentioned, there is Lu-177 VISION trial and AC-225 outside US. You could look at CAR-T trials which are listed and underdevelopment. The CHECKMATE 650 trial used Opdivo and YERVOY worked for some people--about 10% for those that had chemo previously and there is a new trial with Yervoy and Rucaparib. Lots of clinical trials to choose from--Do not lose hope:
Thank you SO MUCH for this info! My husband is in the same situation - MO said nothing more he can do after failing Zytiga + Olaparib, then bone marrow failure after 4th Xofigo injection several weeks ago . It appears the ARV 110 trial does not exclude for low blood counts!! medicine.yale.edu/ycci/tria...
Provenge, estrogen patches. Ask for a Foundation One test if any metastases are large enough to get adequate biopsy tissue - it's possible that Keytruda or a PARP inhibitor may work for you.
You might want to look into the VISION clinical trial testing the radionuclide drug Lutetium 177. If you live in Europe, or if you have the money to fly to Germany and pay for treatment, there are currently 24 hospitals in all the major cities offering Lutetium 177 treatment. You must be PSMA avid as determined by a Gallium PET scan for the Lutetium to work. Good luck!
They could do a biopsy of the metastases or a liquid biopsy to determine if the cancer has mutations which could be treated with specific drugs. If the cancer is BRCA postive most patients respond to Olaparib. If it is PD-L1 or PD-1 positive it could respond to Keytruda or similar drugs.
There are clinical trials with modified niclosamide which could resensitize the cancer to enza or abi:
JP63, you have so many things to find out now. And i am sure, you ll get to one that works for you. This group is lovely in providing the support when most needed. I ll always be grateful to this group.
Sending you healing light.
God bless!
Several things here: Vit C via IV can reduce the side effects of the radiation, speed healing, and increase the kill as well.
An increase in PSA with the radiation may just reflect killing is going on (PSA is a measure of how many are being killed).
You make no mention about your immune system (or what is left of it). A doctor who says "Eat anything you like!" is a big red flag that he has no clue about how things really work, and he will give bad advice.
A pity you did not use Vit C IV with the enzalutamide. It is such a powerful killer combination you may have avoided (or at least delayed) current outcomes.
Do not make the mistake of thinking "usual" meds kill any cancer cells. They just slow it down. Radiation of course kills good and bad. Your body's immune system has to do the main killing job, so that is what you must concentrate on. It has had a lot of negatives over the past couple of years. If you are not eating a raw food diet, find out about it.
JP. You have been given excellent advise above. All suggestions made have a credible basis. Personally, I would follow the Lutetium -177 therapy, as it saved my brothers life. Also a genetic test is essential to see whether or not other therapies outlined will work for you. Finally, read Jane McLelland's book "How to Starve Cancer". It is highly motivational, and shows you that your specialist suggestion about palliative care should be treated with contempt. To day few men should die from PCa. Many options that work are still available to you. Get a doctor with integrative treatment experience.
In a similar boat,will have third ra223 next week,have only bone mets had then radiaded while while on ra223,psa dropped 20 points to41 from61, will have psa checked then.will have the talk then,if you find a silver bullet post it.
I’m so sorry for everything you are going thru! You should try some repurposed drug therapy, something that oncologists do not agree with. If you can buy “how to starve your cancer” book from amazon, you will find great info there. Also check care oncology website, they are using repurposed drugs to treat cancer. Hope this helps. Good luck and stay positive
Outstanding replies from this marvelous crew. You have complementary medicine to explore. Begin with the prince: Dr. AKM Shamsuddin’s book “IP6 and Inositol “. He is a cancer researcher At the university of Maryland medical school.
Wow such good advice, hope and love from these folks here. Rely on them. We are living it. I will fight to the end for my husband. Don’t give in or give up. 🙏
You have not mentioned if you have had PsMa Ga68 scan or Lu177. That would be what I would do, and did do after chemo and other drugs failed. Psa before Lu177 was 25, now 0.57, and docs well pleased by the scan report, saying that bone mets are healing up.
Ra223 usually works on bone mets, so I cannot say why it does not seem to have worked with you.
Thanks Patrick. At the moment I am undergoing palliative radiotherapy to bone mets on spine causing nerve pain. With next step to be R223. However PSA has gone up from 7 to 21 and Onc wants a CT to check on soft tissue. If there is evidence of spread there then R223 not a goer and no other options available apart from a trial if anything available. 😢. I think LU177 will be the way to go. There must be something. Even give chemo another go. 👀 Cheers John
Yes, Lu177 might be an answer for soft tissues and bone mets. Ra223 is only good for bone mets.
But you need to have PsMa Ga68 PET / CT scan asap and find out if Lu177 will work or not, and find out where you can get Lu177, and whether you can afford it.
Some here posted on off label med use, you might find these two papers of interest. The second one is a case study showing the potential efficacy of the treatment. Dr. George Yu in Maryland is using this approach. I would also use the COC cocktail.
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After APCa treatment ends
Just checking to be sure 6 month break after 5 week radiation treatment is the next best step? 
end of he line
End of treatment and worried
ADT vacation has been great, but coming to an end soon
