Info for my brother

[Moef16]

I am seeking info for my brother. He has advanced MCRPC. Two years ago he began with hormone treatment which did not work. Followed with zytiga which did not work. Followed with radiation which was not very effective. Just finished the fourth dose of docetaxel. Tests show it is not working, so it is being discontinued. Onc wants to try xtandi now. Also mentioned that there is one other chemo drug to try (assuming it is cabazitazel). From various reports in various journals, it seems that the odds of the xtandi helping at this point are slim. I am also under the impression that the cabazitazel is used as a follow on to the full course of docataxel. It seems to me that zofiga combined with the xtandi is his last hope. Can anyone PLEASE help with any info?

[ctarleton]

If you can provide some more information about where your brother lives, we may be able to help point him in the direction of doctors or provider sites that specialize in advanced prostate cancer. They may be able to offer more options than his current oncologist is offering for treatments, or options for some genetic testing, or perhaps referral(s) to clinical trial(s).

Charles

[Moef16 in reply to ctarleton]

Thanks. Tried to get him to go to Duke last spring. Not going to happen. He is sticking with current drs, right or wrong.

[ctarleton in reply to Moef16]

Yep, ultimately it always comes down to an individual's final decision. If he's with a local oncologist, he's likely to go through a serial list of "standard of care" treatments. See. e.g.

nccn.org/patients/guideline...

Meanwhile, he might also benefit from being able to talk face-to-face with some other men who "get it", while sharing his story.

malecare.org

Down the road, this Frontline documentary film may be of interest to him and the extended family, too. "Being Mortal"

pbs.org/wgbh/frontline/film...

The deeply moving book "When Breath Becomes Air" by Doctor Paul Kalanithi is very good, too.

(I was diagnosed in great pain nearly 4 years ago, with a PSA in the thousands and lots of bone and lymph node mets. I've found lots of comfort and supportive ideas in all of the types of resources mentioned above. Sometimes we need help and support in learning to Live with our incurable disease, just as much as we need help and support with the flip side of the doctors and treatments that help to delay our Dying of our disease. )

[Moef16 in reply to ctarleton]

Thank you for responding! I provided him with support group info a year ago and offered to go with him. Not going to happen. Reading any info or investigating any other info is not going to happen. Hence why I am the one seeking guidance. He is approaching this in his way. I do not agree with his approach, but I have to respect it. He is the one battling cancer, not me. I wish I could have convinced him to seek out support.

[chalaan in reply to Moef16]

Xtandi worked for my brother after Zytiga stopped working. Then of course the Xtandi stopped working. It is true that Xofigo and Xtandi can be given together.

My brother also did not want to leave his local doctor (who is pretty good), but he would have greatly benefited by another opinion. My brother was scared and just could not get out from under the covers. I believe that there is a group call-in every other Thursday and your brother perhaps could listen in.

Group support is very helpful.

[Moef16 in reply to chalaan]

Thanks for the info. Has your bro tried xofiga? Has anyone tried Anvirzel?

[YostConner]

Your brother cannot use Xofigo while he is on chemo, but if his blood numbers are good, he could use it after. Has the doctor discussed Provenge or clinical trials?

[Moef16 in reply to YostConner]

He is not a candidate any longer for provenge. I found patients going back as far as 2013 that were taking xofiga with xtandi. Not sure if they were in a trial. If he can not combine the two, then it appears to me that xofiga alone would be better at this point than xtandi alone, given that the zytiga did not work. Thanks.

[YostConner in reply to Moef16]

I did not mean to confuse. Xofigo and Xtandi may be used simultaneously.

[Charlean in reply to Moef16]

So sorry to hear that he is going through this but as with my husband, often times these drugs don't work for certain patients. Xtandi nor Zytiga worked very long at all and Xofigo did nothing for him but cause more pain, severe pain, and within a month he was paralyzed. It's really hard to know who has the fast growing, non responsive type of PC and that is why most people do every treatment they can think of. Some are lucky and it gives them years, others it might give a couple months, some so side effects and others side effects making life almost unbearable. It is so wonderful of you to try to offer him information, but you are right, ultimately he has to endure these treatments and make the decisions so just know that you've done what you can. I hope he is able to find something that works for him but it can be a very hard road. Charlean

[Hidden]

Whenever prostate cancer is not responding well to the standard treatments, I think it's best to take a closer look at it to see if there are mutations that may allow for targeted treatments. He can do genetic testing to test for mutations. Another possibility is the cancer evolving into cells with neuroendocrine characteristics which happens in around 20-30% of castrate resistant prostate cancer. In that case, the platinum chemotherapies such as Carboplatin seem to work best.

Hope he finds a treatment that works for him.

[Moef16 in reply to Hidden]

Thanks for responding. I think genetic testing was out when he did not want to go to Duke. Do you know anyone who has taken xtandi with xofiga? Has anyone tried Anvirzel?

[Hidden]

Here is an interesting trial: clinicaltrials.gov/ct2/show...

coming up.

[Dan59 in reply to Hidden]

Martin, I am trying to figure out what the mechanism of action is for this trial drug, have you any idea? I generally go for phase 3 trials, as in late stage they often show the most effectiveness, rather than just finding the correct safe dose.

Dan

[leswell]

Dear Moef16, You and your brother are in our hearts and minds today—and prayers! You can see from the above replies that you are in the right community. I can attest to that even though I can’t lead you to the right drug. These men have lived through it and are caring and knowledgeable. My husband, too, has been through chemotherapy and hormone treatment but not all the failed efforts of your brother. We have faith in these correspondents. You can have too. Sincerely, Leswell’s wife since ‘62.

P.S. We’re off to see the lymphedema specialist in a couple of hours for another incurable condition caused by the PCa treatment. Both legs are damaged, but my guy is keeping at least that part of his diagnosis under control.

[leswell]

P.P.S. We loved both of those books recommended by Carleton and highly recommend. Mrs. S

[eggraj8]

I take ADT (firmagon) along with Chemo (Docetaxel and Carboplatin) and Prednisone which seems to work for me. Sometimes it is the combination of drugs which works. Your brother may want to consider having some combination of drugs used rather than trying them sequentially.

[gusgold]

Your brothers only hope is to follow Nalakrats advice...your bro needs combination treatments

Gus

[Hidden]

Make peace and honor the decision that your brother has made to die sooner rather than later. Please insure that his affairs are in order and that he has excellent palliative and hospice care without pain. Sounds harsh? It's reality.

There are Medical Oncologists that specialize in Advanced Prostate Cancer; especially in an academic and research venue. Should he change his mind, I recommend Dr. Robert Amato in Houston. He was able to rid me of metastatic prostate cancer almost 14 years ago. I have been most fortunate to be able to cease hormone injections seven years ago and remain undetectable today.

I wish him well on his journey and pray for his Everlasting Peace. Until then kick the bastard down that is ravaging his body.

Gourd Dancer

[AlanMeyer]

I agree with the first paragraph of Gourd Dancer's reply.

Every treatment has a cost. There can be significant time spent away from home. There can be significant side effects that add to the burden of pain and suffering. There can actually be a shortening of life when the treatment drugs and side effects do more harm to the body than good. They very often do some harm. They may or may not do more good.

We pay these costs because we hope that the reward will be greater than the cost. But for every one of us, we eventually reach a stage, whether from prostate cancer or something else, when the cost is higher than the reward and we, the patients, get more out of life by concentrating on being with our families or doing other things that make what's left of our lives meaningful and good.

Sometimes seeming miracles occur and that one last treatment rescues a person who appeared to be at death's door. But when all of the standard treatments have failed, how much of our remaining time and good feeling do we want to give up in hopes of such a miracle?

I just finished a book about all this by Dr. Atul Gawande, _Being Mortal: Medicine and What Matters in the End_. I recommend it. It has a section at the end about palliative care and how studies have shown that, at a certain point in our lives, many people would actually live longer as well as more comfortably with palliative care than with further radical treatment.

I wish the best to your brother, to you, and to the whole family. I know you are all trying to do the right thing.

Best of luck.

Alan

[Moef16]

I could not agree more. He will not do it. We could have gotten him to Duke last spring, but he would not do it. I found local support groups for him last year, he was not interested. I found online support groups for him , and he would not use them. If it was myself in his shoes, I would go about this as you suggest, but he is who he is, and he is not going to change. I wish he would communicate with you, but he will not. I am doing this on my own cause I do not want to lose him.