After two years, My trial has now stopped working

[RalphieJr64]

The clinical trial combo of olaparib(lynparza) and cediranib that I've been on for nearly two years has stopped working for me. My PSA is escalating along with more lesions and nodules that are more prevalent from my previous scans. My past history has involved docetaxel, radiation, casodex, zytiga-prednisone. My MO wants to start chemo again or another clinical trial combo of Cabozantinib-Atezolizumab. I wish they would come up with easier names of these drugs. I have to be off my last trial for four weeks to start this new adventure. The side effects like my last trial are debilitating. I'm really thinking of throwing in the towel. Doesn't make sense to be totally incapacitated again. I have three weeks to think about this.

[Rooked]

Don’t give up...They’ve had some great results combining cab/atezo in mcrpc

[RalphieJr64 in reply to Rooked]

Thanks, but the side effects and non quality for the last three years and no end in site for any possible remission is making me lean towards ending treatment. I've been any medication for two weeks now and it's joyous not to be in a daily debilitating situation.

[Bangkok in reply to RalphieJr64]

Look into "RadioLigand therapy. It's targeted nuclear therapy conducted in only 5 places in the world. I chose Bangkok as I was over there cycling in Vietnam for three weeks. My wife and I took up an apartment in Bangkok and stayed for 3 months. One treatment per month. I entered this program with stage 4 metastasized Prostate Cancer. My third scan showed I was in complete remission with no cancer mets visible. My PSA dropped from 980 to 0.41 in 3 treatments. I ran 5K a day with my wife and we cycled 30~40 K on the weekends throughout the treatments. If you have the resources and the ambition look into it and good luck.

[RalphieJr64 in reply to Bangkok]

Wish I had the finances to explore what other countries are doing instead of what is offered here.

[Fuzzman77 in reply to Bangkok]

Out of curiosity how much did they charge for the 3 treatments of Lu177 in Thailand? It may very well be in my future. I have talked to the doctor at Fortis Hospital in Delhi about both Lu177, and Ac225. They do both there but when I talked to her not in combination. Cost was 14K for 3 treatments of Lu177, and 20K for Ac225. They only do it one day per month because the isotopes come directly from Germany and the half life is short. The price included PSMA PET scan, hospital visits or stays, and all doctor appts and blood work. I’d rather hang out in Thailand since I’ve been to India so many times for vaccines when you still couldn’t bring them back home with you. Plus, Delhi is smoking hot.

[Bangkok in reply to Fuzzman77]

It cost $80,000 Canadian for three treatments.

[Helpfordad in reply to Bangkok]

May I ask which hospital in Bangkok did you get the RadioLigand treatment? We were looking into India but India has been in lock down since March and the COVID situation is quite bad there.

[Bangkok in reply to Helpfordad]

Samitivej Hospital, 133 Sukumvit 49, Klongtan Nua, Vadhana, Bangkok 10110, Thailand. Tel [phone] Fax [phone]. Thailand could well be in lockdown also. At the minimum, you would be required to quarantine upon arrival. Contact your Embassy.

[tom67inMA]

The choice is yours, and I can't blame you if you want a break from debilitating treatments. You can always change your mind at any time. As you said, you have at least the weeks. I'd suggest using that time to regain as much health as your can, while specifically not thinking much about "what next". The answer may become obvious during the three weeks. "I'm not a doctor" applies, just a fellow brother in the fight thinking aloud.

The names are very difficult to learn, but if it ends in "ab", it's an antibody. For example denosumab and atezolizumab. Personally, I'm looking for just enough disability so I don't need to think about returning to work during the pandemic.

[RalphieJr64 in reply to tom67inMA]

I just can't believe you were still working. Hope things work out for you. I read your bio. I was an avid runner and golfer. Those days are gone for me. Go as long as you can.

[tom67inMA in reply to RalphieJr64]

Nothing about my disease or response to treatment has felt "normal". All cancers tend to be unique experiences, but mine especially so. I was on disability for 9 months after initial diagnosis, went to undetectable PSA, then returned to work for 6 months (was hoping for years) before neuroendocrine struck. As of two days ago, my PSA is still <0.01. Even my urologist says the neuroendocrine has probably been there all along because my cancer doesn't act like normal prostate cancer, and he looks old enough to have seen a lot of patients.

This trip through chemo had been tougher. Last infusion is in a few hours, and then hopefully my body will start really bouncing back. My mantra has been "use it or lose it". I even had the chainsaw out last week. My strength in still decent (for a skinny guy), but my endurance is shot.

So to sum up a long winded reply, my personal biology excels at turning out rare forms of prostate cancer but generally tolerates ADT very well. Not sure how I feel about it, but I do have an interesting story to tell when people ask "how are you?"

[RalphieJr64 in reply to tom67inMA]

I guess we all have an interesting story to tell if someone asks How are you? In my case I wouldn't oblige.

[Hidden]

From what I've heard, the side effects of second-line chemotherapy Cabazitaxel are not debilitating for most and better than Docetaxel. You can always quit if not, only have to commit to one cycle at a time.

Lu-177 is also an option if you are PSMA avid.

[RalphieJr64 in reply to Hidden]

Gregg, I had a bad time with just about everything I've been on. Chemo was horrible for me. ER four different times with infections and 0 white cell count that put me in the hospital for a week. I just want to feel good. This next step would continue me living basically in a non quality of life situation again. When does one say enough is enough? There are many brothers I have communicated with who's last resort was Cabazitaxel and it didn't work for them. PSA actually spiked and another developed sepsis and another chat friend developed an eye infection that stopped the treatment. I have tried to reach out again but I haven't heard anything months. I'm afraid I will be reading about them as another statistic next. I've got three more weeks to decide.

Thanks

[RalphieJr64]

I went through a genetic counseling session and blood test that really didn't give a solid result for what gene mutation I was carrying. Possible BRACA 1 or 2 but family history of cancer was noted. When you qualify for a clinical trial' it's basically what they pull out of a hat. If it's a combo trial, that's what you are getting. No questions asked. Some guys are just on Lynparza alone, and handle it well. That added extra pill caused me much misery. And now I have to decide if I want to do it again in another form.

[ctarleton]

Is this the combination Clinical Trial you are being offered?

clinicaltrials.gov/ct2/show...

As you ponder whether or not you may wish to enter this type of "combination" Trial, you might find it useful to review some information about each of the agents when they were used by themselves in previous Trials/Approvals for other types of cancers.

Tecenriq (Atezolizumab)

gene.com/download/pdf/tecen...

Cometriq/Cabometyx (Cabozantinib)

cometriq.com/downloads/Come...

"Eyes wide open", whatever choices we make.

Charles

[ctarleton]

Here's some more News. Small numbers perhaps, but some pretty good results for some, compared to many other Trials.

onclive.com/conference-cove...

curetoday.com/articles/comb...

"The more you know...."

Charles

[RalphieJr64 in reply to ctarleton]

Thanks for this information. You do have to sign a consent form for every trial. I was given the usual packet of information but I will definitely read up on these web sites.

[sammamish]

Wondering since unusual cancer type did you ever follow other markers like Cea?

[RalphieJr64 in reply to sammamish]

Forgive my ignorance, but Cea? was never noted in any lab work.

[sammamish in reply to RalphieJr64]

No its not done for prostate by most docs. However rare forms of Pca can expess the tumor marker cea. So for unusual pca its a valud marker.

[ScottfromSD]

I’m 2 weeks into the cosmic-021 trial (cabozantinib + atezolizumab) and no significant side effects so far.

[RalphieJr64 in reply to ScottfromSD]

I hope it works for you and you never develop the multi listed side effects that I have to sign off on.

[j-o-h-n]

Hey Ralph..... It's easy for me to say this but "Please don't throw in the towel". You don't know me from a hole in the ground.... but you're my brother. I always think about those poor young guys who got mowed down on the beaches of Normandy during WWII. They didn't have the opportunity to fight on so that they eventually could "throw in the towel". I've seen many many posts about guys easing their pain and feeling like melting marshmellows using the gift from the Gods. If this gift is legal where you live why not take some and tear up that towel. So junior...... there's this guy who was born with a brass philips head screw for a belly button. He was always curious about what would happen if he unscrews it. So one day he did and is ass fell off. Peace!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/10/2020 10:05 PM DST

[RalphieJr64 in reply to j-o-h-n]

Thank you John. I could never compare myself to the men who gave their lives for us, but I am a fraction of what I used to be. I went into this to beat it. But you have to come to terms and realize this isn't winnable. I just want a little taste of quality for now. To drag this on makes no sense to me.

Good luck, Good Health and Good Humor right back at you