Advanced Prostate Cancer
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Treatment change imminent for mcrpc

I’m a 74 year old male with advanced prostate cancer. I was diagnosed with metastatic disease in 03/2010. My gleason score was 9 and my cancer was said to be “very aggressive” with scans showing mets in the right ribs and the right hip. I was entered into the Chaarted Study and received taxotere and lupron. My PSA quickly dropped from 7 to 0.1 although I had to withdraw from the taxotere (chemo) halfway through the treatment cycle due to the onset of chemo induced neuropathy in my feet and legs which persists to this day. Owwie! All radiographic evidence of metastasis promptly disappeared. In 2012 my PSA rose again until peaking @17. At that point I also became unable to urinate as the cancer had obstructed the urethra. I was given a modified TUR using laser surgery which fixed that problem and I was also placed on abiriterone acetate ( Zytiga). My PSA very quickly dropped back to 0.1 where it remained until early 2017. Since then it has been steadily climbing until reaching 8.4 last month (Dec 2017). Scans remain clear. Now the docs must decide what to do next and it looks like Xtandi or Keytruda (immunotherapy) off study. Neither is likely to be as effective as the Zytiga. The other option is to look at clinical trials of which there are many in the large metro area I live in. I meet with my medonc next week. Any advice?

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No advice. Just know that I am praying for you.

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Much appreciated!

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You have done well! There should be a lot of imformation on nueropathy here and what can be done. Have you had genetic testing, They do it now with a simple blood test, and it can detect mutations such as PD1, which would indicate a likely good response to Keytruda ,also they look for Braaca mutations. I myself had a long run on xtandi after zytiga failed , so we never know what will work until we try it. I wish you the best.

Dan

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No genetic testing yet, Dan but will no more at my oncdoc appointment next week. Thanks so much for your informative reply. Much appreciated!

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Please keep us posted , when you see the Dr. , and let us know what you decide to do. I also want to say that with really good liver numbers some have tried eating with zytiga for an increased response. The thought is that when it fails it may not be getting absorbed and eating it with food increases absorption, I would only do this under the supervision of a Medical Oncologist that agreed to it . WE need to get as much time out of each drug as we can!

All the best.

Dan

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Dan59 ,

sorry I posted reply in wrong spot below, but I would worry about the effect on the liver if you took Zytiga with food.

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THat is a definite concern with this and must be followed by the MO. In my case the MO did it bcse all my liver numbers had been in the very low end of normal,and stayed there the whole time.

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7 to 8 years on, despite having to withdraw from chemo back in 2010. Sounds good to me! Keep your spirits up!

I am just about to have round 2 of docetaxel (taxotere) alongside ADT (leuprorelin), same as you, and note with concern that chemo induced neuropathy in your feet and legs which persists to this day. Any advice on how to minimise the chances of this?

In a pre-chemo workshop black nail varnish "for ladies" was suggested by the tutor. Why not men, chorused my wife and I! I dont care what it looks like, as long as it works.

rpol

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Good Morning rpol,

I just completed 6 cycles of Docetaxel/Carboplatin chemo.

Med Onc recommended daily oral 100mg B6 to mitigate peripheral neuropathy plus I iced my hands and feet for each Docetaxel infusion. So far, OK.

Best wishes. Never Give In.

Mark, Atlanta

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No, unfortunately I don’t have any advice other than to tell you that less than 8% of those receiving chemo develop neuropathy so the odds are with you. I wish you all the best as your treatment continues!

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I also was diagnosed with aggressive pca with Gleason 5+4 While on lupron underwent chemo with docetaxel (taxotere) But after the initial dose of 130 ml I had to discontinue the treatment because of the high toxicity of the drug. I developed grade 3 mucositis. But most of the patients tolerate this drug. I don't why it happened to me. For you the toxicity resulted in neuropathy

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that's encouraging

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Dan59,

I really dont think any conventional Onc would recommend going off directions for Zytiga. If you find one ,let us know!

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Mine would at MD Anderson.

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My husband has been on Xtandi for over two years. Just now having a creeping up PSA and some lymph node appearances. It's been good for him. Don't write it off -- although we've been told that Zytiga *after* Xtandi might not be as effective, so maybe the vice versa is true -- they're pretty similar so may not have different effects. But we're still hoping, because short of more chemo, that's all we've got left. He's done it all. But 4 years of pretty good living as a result.

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My oncdoc has patients who have gone to Zytiga after Xtandi failure and vice versa and where patients in both groups have had success with the new drug so keep up the positive thinking and remember there are other emerging therapies involving newer drugs that are working already for some patients. My doc has talked to me about Keytruda which might be right for me. Good luck to you and your husband as you continue this search for a good outcome.

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I've seen Keytruda mentioned a few times -- but on a quick look it doesn't seem specific to Prostate Ca. My husband had Provenge, which is a very specific immunotherapy treatment for Prostate Ca. Not sure how widely available it is, but we were surprised it was available on O`ahu. Hawai`i is paradise until you realize it's 2500 miles from anywhere else.

Will look more into Keytruda . . . and I know the research oncologist is considering some tumor biopsy to see if some other genetic options might be possible. This is going to be an interesting year.

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Missed this post? Funny you mentioned Keytruda if my husbands biopsy qualifies him. It was an option instead of chemo for right now?? She told us that Keytruda is a treatment for lung cancer but they found its helping prostrate cancer. I'm so hoping that the LN biopsy comes back and he qualifies.

Best wishes! Lynn

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Yes, keep me posted on that. My husband may be in quite the same place. We're waiting to see if the LN are biopsy-able yet.

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Hi, My name is Lynn, my husbands done it all to and now just like your husband I think getting chemo again is all we have left also? Started at age65 now is 74 young. Hope for the best for our husbands and best wishes and prayers coming your way, hang in there and keep us posted. Us caregivers have to stick together too!!

Sincerely, Lynn Pa.

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This site has been a godsend for me as a caregiver! But yes, it's good to have compatriots. I really try to take care of myself too. Massage tomorrow!

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Found this site by accident but it has been a godsend for me also, so many caring people .and helpful information. I try to take time for myself to. I keep up with mani/pedi appointments etc. I like to shop even if I'm just looking. My daughter loves a massage, I've never had one, maybe I should try, might relax me.

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Research update -- Keytruda is for PD1. prostatecancernewstoday.com...

My husband does not have this marker but this is one of the newer treatments for men who do have it. Good wishes to you all!!!

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Hi, we also are waiting for the LN biopsy results to see if my husband qualifies. His oncologist mentioned if not, he would have to go on chemo treatments once a week?? I asked her about clinicial trails?? She said she would look into them for us and that Penn in Phila had some there.We live in the suburbs of Phila so we would not have a problem getting there. Waiting to see??

Keep in touch, Keep up the fight!!! Best wishes to everyone!! Lynn

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Hi cholly75

I wonder whether you have been checking up on me.

Please read my bios.

In short I am a newly diagnosed Stage 4 D2 with mets to numerous lymph nodes and spine and ribs.

I have no Bone pains other than about 4 days when I use Vernon Johnstone baking soda/honey (I replaced molasses) for 5 days 24-30 December 17. It is paramount for someone to maintain Urine pH 7.2-7.5 and then raise to 8.0-8.5 for not more than 5 days and also get a physician to support your trial.

Since this is a recurrence it would be a painless journey provided no other health issues as you did not elaborate.

So today I am looking quite as normal and pain/fatigue free and can engage in my normal golf and even sex. Currently I do have Gross Haematuria whenever I physically exert myself. The last 2 blood & urine analysis indicated normal blood count and no infection.

Wish you best of luck in whatever decision you embrace.

Roland (Honorary Doctorate?????)

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Good Morning cholly75,

Please see my bio for treatment history as in the past 5 1/2 years I have had about everything.

As suggested, get a Guardant360 liquid biopsy. I have had several and an ATM defect led to a year of Lynparza, a PARP inhibitor.

Best wishes. Never Give In.

Mark, Atlanta

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cholly,

Did you ice your feet and hands during chemo? Was that mentioned as a possible preventive for peripheral neuropathy? I am scheduled to undergo chemo in the next month or so and already have Grade 3 peripheral neuropathy (unknown cause), so I am very concerned about the PN getting significantly worse. Icing is suppose to help, but in my case I am not so sure. Actually, according the the Full Prescribing Information for docetaxel, "discontinue docetaxel treatment entirely in patients who develop grade 3 or higher peripheral neuropathy." So, I am not sure that I will even be able to start docetaxel.

Thanks.

Richard

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Hello Richard,

Yes, they did tell me about using the ice and I tried it initially but I developed the neuropathy almost immediately and so my treatment regimen with the taxotere was limited to just three of the six sets scheduled. I was told only about 8% of patients receiving taxotere develop neuropathy but some of us must be very sensitive to the treatment. It has plagued me ever since my chemo and I've tried everything to deal with it all to no avail.

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cholly,

You should see a neurologist, if you haven't. My neurologist has me on gabapentin which really helps with the pain. He also has me taking vitamin B12, not the usual over the counter type (cyanocobalamine) but the less common methylcobalamine. I purchase mine at Wonder Laboratories. It is not much more expensive than the cyano derivative.

Richard

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I have seen a neurologist and I am on gabapentin(I’ve been on it for years) Lyrica produced nothing but side effects. I’ll look into the methylcobalamine. Thanks for the tip! I also use a tens device with mixed results.

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Thanks Vandy. Appreciate your wisdom!

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Have you looked into Apalutamide it was just approved by the FDA

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Hi George, Apalutamide has only been approved for treatment of non-metastatic prostate cancer. Mine is metastatic.

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