Vision Trial or Xtandi ????

[Alvin735]

After 4 sessions of Docetaxel & Carboplatin combo I had to quit. Too many side effects and started a terrible rash all over. That was 4 weeks ago. Dr. appointment today after a MRI and blood test on Monday. Mets are still there and PSA has risen. Dr. is trying to get me on the Vision trial (only 14 spots left) and if that doesn't work, then will go to Xtandi. Please give me any insight as to which would be the better option ... thank you.

[NPfisherman]

If you have extensive mets and had a PSMA scan with high SUV scores, then the VISION trial makes sense... Salivary gland toxicity is the side effect of concern...I guess if you had no scan, then sign up for VISION, and I believe they do the scan, and if your SUV scores are higher, then your chance of success is higher with the treatment:

sciencedaily.com/releases/2...

Xtandi has it's own issues with side effects... Fatigue is what is commonly complained about here...

Both have success in treatment.... Best of luck....

Don Pescado

[Alvin735 in reply to NPfisherman]

I have not had the scan yet. Understand I will go to Houston for it.

[NPfisherman in reply to Alvin735]

Go for it... it is a more accurate picture of your disease process and will give you more info... Hope it works out well for you... Best of luck, brother...

Don Pescado

[pilot52 in reply to Alvin735]

You have to love Houston and Rice Village....great restaurants...

[pilot52 in reply to NPfisherman]

I believe staying active overcomes the fatigue factor...I have had 0 so I would not let fatigue scare you off if this turns out to be your best outcome....I actually feel great with tons of energy and stay busy.. Best to you in the future....Blue Skies...

[NPfisherman in reply to pilot52]

Xtandi may be my next stop, but hopefully, I will not need anything other than Zytiga and Lupron for a long time....

Blue skies, Aviator......

Don Pescado

[Tall_Allen]

Neither. With germline BRCA2, and especially with evidence that carboplatin was effective, even if too toxic, you seem to be a perfect candidate for a PARP inhibitor. Here's a list of clinical trials:

pcnrv.blogspot.com/2018/02/...

Many of those trials combine a PARP inhibitor with another medication. Discuss with your oncologist which is most appropriate for you.

[Tall_Allen in reply to Tall_Allen]

If you are on the VISION trial, you would not be allowed to use a PARP inhibitor because it is not SOC. I think you are much better off using the PARP inhibitor now because you are an ideal candidate. In a year or two you will probably be able to get Lu-177-PSMA-617 without risk of randomization.

[Alvin735 in reply to Tall_Allen]

Thanks. I have an email into the Clinical Research person to ask if there are any PARP inhibitor trials that I may qualify for instead of doing the Vision trial. I can talk to Dr. Sartor about it next time I go, but I don't feel comfortable "questioning" his decisions via email or a phone call.

I really do appreciate your inputs as I have learned much from y'all.

[Alvin735 in reply to Tall_Allen]

She said (the Clinical research person that does all the "trials") that I don't qualify since I've already had Carboplatin. I'm thinking of talking to Dr. Sartor next time I see him ... possibly the 23rd of September when I go back in for another blood test.

[Tall_Allen in reply to Alvin735]

I encourage you to go through the list yourself. Looking at the first trial on the list, the inclusion criteria reads:

"For participants receiving prior platinum (cisplatin, carboplatin, or oxaliplatin either as monotherapy or in combination) for advanced (metastatic and/or unresectable) solid tumor, have no evidence of disease progression during the platinum chemotherapy."

It seems that most patients who respond well to platins also respond well to PARP inhibitors, especially if they are BRCA2+

It's not a bad idea to send him an email before the meeting, telling him that you'd like to discuss PARP inhibitors at your next meeting. I find doctors are sometimes more amenable to ideas if they have had time to think about it.

[Alvin735 in reply to Tall_Allen]

I will and thank you.

[Patrick-Turner in reply to Tall_Allen]

As long as a man is polite and courteous to his doctors, they usually listen to what he has to say. One told me once that going online to find out more would make me anxious and confused. I said I had found talking to doctors had the same effect, and the online research papers had a calming effect. Then I added that because I was the first patient in Oz to be having his method of salvation IMRT after initial EBRT years before, which failed, he had much to learn just like I did, and where would he get his ideas? online of course, and in this case from unsubstantiated articles written up in American Medical Clinical Journal. Well, this WAS a cheeky thing to do, but I happened to agree with him that some ideas are worth a try even where there is no evidence to support the efficacy. What he offered was available at his hospital in Melbourne, but not in mine in Canberra, so spending about usd $11,000 seemed sensible.

There still is no well known efficacy for what I had, and later PsMa scans showed no evidence his special Calypso IMRT did me much good. It might have tripped the Pca, but it got up and continued in the race against me.

But Alvin has said he had no response with platins in chemo, so it may mean he does not have Brca1+2 genes, so PARP inhibitors might be useless. But the only real way to find out if PARP might work is to get DNA test, and that's a slow to get thing.

If he could get Lu177 if there's high Psma avidity. maybe he does well, and the PARP thing could be done afterwards. I didn't dither around when my Docetaxel failed, and I went straight to Lu177, and Psa was only 25 before and was 1.7 after 3 shots. Docs then put me only Xtandi because they think PsMa avidity is made higher so that my last 4th shot of Lu177 was going to be supercharged. Psa is now 0.4 at 4 months after 4th Lu177 shot.

There is a trial going on in Sydney to see if Lu177 + Xtandi works better than if a man just has Lu177 only. The doctor who oversaw me getting 3rd Lu177 shot was the research doc doing the trial, before she got funding based on what she had seen so often in clinical situation where Xtandi made Lu177 work better, and she said that where Xtandi had failed before chemo, then after chemo it would work OK again.

This doctor told me that if Psa rises again, and it probably will, then by all means I should have DNA test for Brca1+2 and have PARPs. I bet I do have Brca1+2 because my dads mum died of Oa, so did one of my 2 sisters, and other one got Brca, had both breasts removed, and is alive and well 12 years later at 75. I really don't want to be forced back to chemo, especially carboplatin, it is a horrid thing with bad side effects.

I might get another Lu177 shot, or Ac225 if my Pca grows back a bit. Its all here for sale in Sydney if docs think it would work and I want it.

I met men from USA who had flown to Sydney to get Lu177, but many go to Germany for it.

Patrick Turner.

[Alvin735 in reply to Patrick-Turner]

Interesting. I am BRCA2, had the test a couple of years ago.

[GP24]

If I were in your situation, I would take part in the VISION trial and get my MO to prescribe Olaparib, a PARP inhibitor, to combine that with the Lu177 treatment. A combined treatment is usually more effective.

This may convince your MO: astrazeneca.com/media-centr...

[Alvin735 in reply to GP24]

Thank you ... also thanks for the link. I saved it and will review with Dr. Sartor when I go back in about 2 weeks. That does looks like it would the best opportunity to beat the beast down again for awhile.

[Patrick-Turner in reply to GP24]

Hi Alvin, so you are Brca2 positive. I think you ought to have PsMa Ga68 scan asap. Treatment with Lu177 always depends on this scan showing that Lu177 might be helpful. So sure, join the VISION trial asap, and whether having an initial PsMa scan is part of that I don't know.

Trial conditions may prohibit any add on treatments such as Xtandi or Olaparib. In any case, you need to try to take advantage of what is available now, and not dither. Perhaps you would find Lu177 easier to tolerate than any chemo.

Its now about 10 months since I had last of 5 chemo shots and there have been long lasting effects on how my legs work, and I am trying to get back to cycling to give my legs exercise to force them to get better. So far so good, I've just cycled 510km since 16 August at total of 20.0kph average for all km. Its enough to do me the world of good, nearly 1 hour a day average of hard work out.

I can see that lack of exercise would make recovery after chemo very prolonged, and make me age even faster.

The side effects of Lu177 are difficult to explain because they seem to be so minimal. I get an occasional dry mouth at night, but never all night long, and not in the daytime, and usually if I massage the saliva glands they turn on again if they have turned off at night. A take a sip of water, and all is well again. I have had very low side effects from Lu177. I could have more Lu177 if I needed it.

Patrick Turner.

[tallguy2 in reply to GP24]

Exactly what I would write. Excellent!

[noirhole]

In the Vision trial you will most likely get Xtandi also.

[Hidden]

Were you doing chemo once every 3 weeks?

[Alvin735 in reply to Hidden]

I was, but only did 4 infusions. Hospitalized twice during that time, after infusion #1 and #4. Was having breathing problems and broke out in a terrible rash all over.

[Hidden in reply to Alvin735]

Not suggesting you do chemo again, but want to let you know it can given at 1/3 the dose on a weekly basis. This has been done to treat elderly and sensitive groups with good results. It's also lower risk because you recover much more quickly and with less dose, there are often less complications.

Just throwing it out there as something that might be an option at some point for you.

Hope you find a treatment that works for you.

[Alvin735 in reply to Hidden]

Thanks. I had very few side effects from all the other stuff I've been on since diagnosis in 2012. But, chemo kicked my butt ... I would like to avoid going back on even a lower dose, at least for awhile.

[kapakahi]

FWIW, fenbendazole and the taxane chemo drugs work exactly the same way: they disrupt the microtubule function that allows cells to divide. The difference between fenbendazole and the taxanes is that fenben doesn't make you sick (although I don't know if that holds if you're especially sensitive to taxane drugs). Fenbendazole additionally blocks glucose uptake to cancer cells - and cancer cells are nothing if not greedy for sugar, since their whole thing is uncontrolled growth.

Since you seem to be trying one standard treatment after another, it probably wouldn't hurt to give fenben a try. There's no taste, it's cheap, there's a fair amount of research supporting its use, and for some people it seems to work to one degree or another. If it does make you sick, you'd know it quickly and can stop taking it. I'm nowhere near your level of PCa, but I've been taking fenben for 3+ months and my PSA has dropped in two successive monthly tests (that's never happened in the 11 years I've had PCa except following HIFU) - some others on this site have reported similar results. Cause-effect? I'm not sure. Just had my third test today - should get the results soon.

Meanwhile, if you haven't already read Joe Tippens's blog about fenben, I'd suggest it as time well spent - lots of good info, links and anecdotal cases, first and foremost his own (small cell lung cancer, mets lit him up like a Christmas tree, all other treatments failed, given three months to live - 3 years ago). Joe Tippens Fenbendazole Blog

And if you've heard all this before, or tried it without success, please disregard - I just thought I'd pass on what little I know. I hope for the best for you.

[Alvin735 in reply to kapakahi]

I just read it all. Wow ... I'm not sure if I'm quite ready to take this leap yet, but I will keep it in my back pocket. Thanks and I'm glad it is working well for you.

[EdBar]

Xtandi has its share of side effects which are substantial but tolerable and there are many things you can do to mitigate the side effects. And there’s no need to travel, get into a trial etc., just fill a prescription. I’ve been taking it for about 4 1/2 years now. It’s still doing the job.

Regarding Sartor, I too am a patient of his, I don’t think you have to worry about offending him with questions.

Ed

[Alvin735 in reply to EdBar]

Thank you. Yes, Dr. Sartor is wonderful and I've been a patient of his since inception (2012); I will send him an email before we actually start this and see about doing the PARP inhibitors instead. What have been your side effects of Xtandi? That's great that something has been working for over 4 years. I hope to get back to something working for a long time.

[EdBar in reply to Alvin735]

Main side effect is fatigue however exercise, taking at night etc helps with that. Also cognitive issues. I developed a toxicity to it after a couple of years that resulted in a sickly feeling and reduced my dose to a half dose which I’ve been on for a couple years now which helped greatly. I also had started getting headaches in year three which we think was due to xtandi and Sartor prescribed Celebrex which works like a charm and helps with ADT aches and pains. All of these SE’s could also be also be caused from Lupron which I’ve been on for 5+ years. So with so many meds sometimes it’s hard to sort out what is causing what.

Ed

[Alvin735 in reply to EdBar]

thanks. I've been on and off of Eligard for 7 years, so know that fatigue and yes, cognitive issues as well. Luckily, I retired in 2016 and now I blame my less than stellar cognitive issues as "chemo brain".

[EdBar in reply to Alvin735]

Trust me I know the feeling, fortunately I retired in early 2016 too, I could never do my old job today.

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

"I don’t think you have to worry about offending him with questions."

Shoot.... I'd offend Kim Jong-un about his hair cut if my life depended on it....We put doctors on pedestals...and give them special license plates....Gods.....WTF is going on?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/12/2019 5:02 PM DST

[abmicro]

VISION trial allows you to use any hormone treatment you want while on the trial, and in fact requires you to continue any ongoing hormone treatment while on the trial. XTANDI is a hormone treatment. I did XTANDI while on that trial and my first infusion got a great response.

[Alvin735 in reply to abmicro]

Thanks. I learned that here. I thought it was one or the other, I was wrong. I'm still doing the 6 month eligard shots as well.