Failing Clinical Trail

Hello

My husband was in a immunotherapy clinical trial at Mount Sinai,

Nivolumab and NKTR-214. He had first treatment September 8 and had reactions that included fever, rash, low blood pressure. Nothing we could not handle. Treatment is every three weeks 2nd tx was September 30. More fatigue, lower fever, less rash. All typically lasted about 5 days and he was up and going again. Yesterday he received a call that his liver enzymes were very high. We found out that after first treatment they had gone from 24 to 53. 2nd tx (yesterday after bloodwork) they are at 173. He did more bloodwork yesterday, Saw Dr Oh, sent to a liver dr (Dr. Law). She recommended he not receive these meds any longer due to the sharp increase in numbers. Talked about different hepatitis risks.

Now what???? He failed Xtandi in 9 months, failed Erleada in 3 months. We decided to try this thinking this could boost his immune system (5 txs maybe till december, I did not expect it to work on his prostate cancer due to very slim chance) but we thought we could give it a try, give his immune system a good boost before next medicine. I'm asking for some suggestions before chemotheapy if there are any??? Many patients here on this site talk about Zytiga? Is this an option? I'm feeling frightened. Running out of options???

Thank You All, Carol

[Tall_Allen]

Is he metastatic? If so, where, exactly? Is he castration resistant? Has he had any genomic tests - germline or tumor? Did Dr Oh suggest chemo of some kind? If so, which? And if so, why do you want to put it off?

(It would help people responding if you fill this info in in his profile)

[Hidden in reply to Tall_Allen]

Going to do my best here....yes he’s metastatic. Left hip (a spot) that was radiated and retroperitoneal radiated last spring. They just did a biopsy on a lymph node in his chest bc it is there too. We did send original biopsy to Foundation via dr Oh office but apparently not enough so we went with company that Mount Sinai uses. At work right now so the name escapes me. Meeting Dr Oh Monday at noon to talk about next option. Is it chemo? Is it Zytiga? Is it LU-77. I don’t know. BTW I thought I filled his info out in profile. Not sure what I missed or am I to expand on it. THANK YOU FOR RESPONDING TO ME. I feel pretty alone out here

Carol

[Tall_Allen in reply to Hidden]

There is nothing in his profile. If you click on the round picture in the upper right hand corner, pull down to "profile" and click on "Edit Profile" you can fill in that info.

Because he failed Xtandi and Erleada, Zytiga may not work for very long. Docetaxel may sometimes reverse resistance to hormonal therapy. It is possible, that Provenge will synergize with docetaxel. Let us know if the genomic analysis says anything useful.

[Hidden]

I’m sorry if he failed that test .. chemo could work . We see fellows fail one and move to the next . Those in the know can advise as to what’s next . Im pulling for the Chemo to knock the pc back .. Let’s break its hold on him . Talk about the APC rollercoaster ..it’s not for the faint of heart ..Im sending Many prayers his way 🙏🙏🙏May god show us mercy .

[Hidden in reply to Hidden]

Thank you for your response and your heartfelt prayers

[Hidden in reply to Hidden]

This is one wild and crazy mad hatters ride . With our chemistry gone wrong we play the cards that we are dealt . Sometimes prayers is all that I have . Keep your faith in what you believe... I remember in the 5th grade walking a cake walk at an after school event .Very fun ,I got a chocolate cake . APC ain’t no cake walk , it’s not a walk in the park . It is vicious . It’s Goal being to eat us for breakfast .. I’m doing what I can to survive with APC and to stay off of its dinner menu .. Take extra fine care of self upon this walk . Please let us know what’s the next step . I’ll keep praying 🙏🙏🙏

[tango65]

There are several possibilities of treatments. He could request Provenge to boost his immune system.

The sequence of ADT plus anti androgen and when they fail chemo with docetaxel or cabazitaxel seems more effective than continuing to use different anti androgens. If there is response to chemo then treatment with the new anti androgens could be effective again for a while. This is a paper by Dr. Oh:

ncbi.nlm.nih.gov/pubmed/302...

Lu 177 PSMA is also an option.. You may have to go abroad and pay for the treatments. There are clinical trials for Lu 177 PSMA (some in NY) You could contact them and see if he could qualify:

clinicaltrials.gov/ct2/resu...

Then there are the clinical trials for resensitization of the cancer to enza or abi using modified niclosamide :

clinicaltrials.gov/ct2/resu...

health.ucdavis.edu/synthesi...

Best of luck,.!

[Hidden in reply to tango65]

Thank you for all of the information you provided. Read dr ohs articles. When it gets dark it feels hopeless but it is not right now. Much appreciated

[tango65 in reply to Hidden]

Best of luck in this journey, a fellow traveler.

[Metungboy]

Please push back against the patient blaming language of “he failed therapy”.

I know it’s a bit pedantic but I think quite important.

The therapy failed this man he did not fail the therapy. I have looked after many people in my medical life with lots of diseases and I have noticed the grimace of pain and some times low level guilt, with the patient blaming language of “he failed therapy“.

Having bad disease is not your loved ones fault. He has not failed. Medicine has failed him.

Bad treatment decisions can flow from this thinking.

My best wishes

[Hidden in reply to Metungboy]

Thank you. A much better way to state what is happening Much appreciated.

[Kaliber in reply to Metungboy]

Well put 👍👍👍