Advanced Prostate Cancer
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Moving on from Zytiga

Well, the day has come. Zytiga is no longer working for me. My rib cage pain has been persistant, and my PSA just took a big jump from 18.7 to 49.9 in three months. I'm stopping the Zytiga and weening off the prednisone.

Next week I will have an ARV7 blood test and a new baseline bone scan. My MedOnc has referred me to the RadOnc with the expectation of starting Xofigo. I had a CT scan in May that did not show soft tissue mets, but the RadOnc may want to repeat that. If I turn out to be ARV7 Neg, then we may add Xtandi simultaneously.

I've known this would come, but I feel just a tiny bit more mortal this week.

If any of you have stopped Zytiga and found a good way to use unopened bottles of the drug, please let me know. The pharmacy won't take it back, and Johns Hopkins didn't want it. I'm thinking there must be a free clinic or strapped guy who could use it.

Have a great weekend, everyone. Sam and I are going to New York to celebrate a friend's 50th.

Yost.

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did you try metformin

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Yes. I use 2000 mg metformin daily.

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Me too.

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Yost, I forgot that my story about my similar path & about finding a way to pass on my unused Zytiga would be at the end of these messages, or I wouldn't have made brief comments that presume you already read it.

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Very sorry to hear about this. A loss for one of our brothers is a loss for all of us. I feel it too and sending my prayers and thoughts your way.

Just wondering, is chemo an option for you?

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Thanks, Gregg. Chemo is an option and will remain an option after Xofigo. If I were newly diagnosed, I would push for early chemo, but since I'm ten years in and have had lots of treatments, I'm OK with holding off for chemo.

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Yost chemo was the foundation for me pre Zytiga. Great results and also from the subsequent Zytiga but the past month has given me new pains and I imagine - I hope I'm wrong - that my PSA has decided to kick me. Have a great trip and party time. Taking of trip my daughter took her boyfriend for a birthday trip to USA from England. Austin, Houston, NO, Miami by car. Yep they're still there travelling nowhere fast. Should not have raised her as a lawyer. Are they stupid. Yep.

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I hope they are having a great time and avoiding storms!

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Thanks again Yost. They made it to NO and head manana for Miami Beach art deco hotels. Hope your party still keeping you dancing.

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Again, I'm taking the same road you are, Yost.

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I'm very sorry to read your news. Prayers for the best answers as to what should be next in your treatment. The fact that you're thinking of how to get your unused Zytiga to someone else who might need it speaks volumes about you. God bless and best wishes. Enjoy your trip to NY.

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Yost, I am sorry to hear of zytiga not working anymore. I had a sustained response to xtandi after zytiga, I hope you can add that to the xofigo and that the xofigo gives you relief from your pain .I think I would want a repeat psa in no more than a month. I am glad you are seen at such an excellent prostate center as Johns Hopkins. Have fun on your trip to NY.

Dan

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Thanks, Dan. It does appear my PSA tests will become more frequent.

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I wasn;t going to write seeing I came home today and am more tired from hospital and so many tsts. While reading I saw Yosts Zytiga worry and wrote a few thgs. Came home to a very exhausted Shyrlene..She woke this AM to find the hot water tank leaking all over her floor in Ldy.room and started calling plumbers. Prices are doubled Sdys. so after putting towels all over and constant mopping she expects plumber tom.

I had 2 blood transfusions. entering hosp. I had 101.4 temp. and they said they wanted to get to the cause so on with the tsts. Inf.disease Dr. said he thought liver so had many tsts., said liver OK...so they do not know why temp. which is now down after 2 anti-biotics. Now said RBC better. I will find out final results and let you know. Started Xtandi yest...only 1 to start..don't know if there will be bad effects. Hope you are doing well. Let me know whats current with you.

Sidnw(Shyrlene)

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I hope you feel better quickly! Fingers crossed for your numbers.

I interrupted Xofigo for some successful palliative spine radiation, but I’m back on it now. I’ve had four of the six shots. Less nausea this time—and somewhat better appetite. Gladly, it has helped mets pain a lot. I go in tomorrow for #5 labs and weighing.

We decided to hold Xtandi until I finish Xofigo. Lots of factors went into that decision—and it could change before #6–but I’m happy with it for now.

Best to you,

Yost.

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Hi Yost,

I am glad to hear your palliative spine radiation helped. I recently had it as well, helped immensely. Glad to hear Xofigo has worked well for you too. I completed two injections, had to stop. Lost 25 lbs in two weeks,, could not hydrate, going to infusions daily, nauseous, got to where I could barely hydrate. Guess it was not a match for me.

Praying for you & all of us on the tough journey. I wish you & everyone the very best.

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I’ve had nausea and weight loss, but they were not as severe. I hope you’ve found a treatment that works better for you.

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Hi Sid,I am so happy to hear the transfusions were a success and that they got you all fixed up, sorry to hear about the water tank however. I am starting second line chemo in a few weeks , so until that time the wife and I decided to escape the frozen North and head for Florida, currently on a layover in Charlotte NC.

Dan

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Hope you enjoy weather and forget all of this! You are a great guy and I wish you the best.....you deserve it. Once again, being in hospital a week Medicare sent me a nurse today, a therapist tom. Having trouble walking without walker...!

Sidnw

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Hi Yost, Best wishes for the best outcome!

Jim

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As you know everyone here is on your side. We will be praying for you.

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So sorry to hear that, Yost. You're a big inspiration --- and you're in my prayers every night. Hope y'all have a wonderful trip!

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Oh Yost.....Im so sorry you are hurting. I hope the Xofigo is a go and it knocks your pain away and something will take your psa down. Have a great trip and Happy 50th Friends Birthday :)

Always good wishes,

Jackie

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Yost, did you fail Lupron before going on Zytiga and if you did fail Lupron were you on Metformin prior to failing Lupron.

Gus

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Gus. I've been on Lupron continuously since August 2011. I started 1000 mg of metformin in about December 2012. Lupron failed summer 2014, though I remain on it. We bumped metformin to 2000 mg May 2017. Yost.

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Sorry to hear this, Yost. 50th anniversaries are wonderful- enjoy.

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Sorry to hear your news. You are a good friend to all of us and an inspiration to those of us who are newer to the journey.

We are all praying for a great response to your next line of treatment!

Have fun on your trip!

James

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You’ll be in our hearts and prayers next week, Yost. May the ARV7 test and bone scan make Xtandi possible, and may that drug take over where Zytiga left off. You’ve been a thoughtful and compassionate contributor in this community. We’ll think of you daily. Les and Jan

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Pretty much what everybody has already said, good luck and enjoy your trip.

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Yost, I'm sending positive thoughts your way. I hope the xtandi works well for you.

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Have a wonderful time Yost! Let us know how Xtandi is working. Sid started on it a few days ago and Dr. is only giving him one a day to start.

Shyrlene--Sidnw

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Hi Yost.

I am sending lots of positive thoughts and prayers.

From my own experience, if we had to do it all over again, I don't think we would wait with Chemo. I think we have waited with it for too long. However, if you do feel strongly about Xtandi, then try it first.

In any case, I am thinking of you.

Mel.

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Hi Mel,

I'm getting the same advice as Yost. Since we started on this road before chemo was used early, we're still being advised to wait until we've failed the newer treatments before starting chemo.

Neal

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Which doesn't mean we won't be able to try some of the newer treatments again after some chemo. See Nalakrats' story below in response to my comment on hist post.

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Yost, since I joined this group I have perceived you as a good PCa Manager.You have a sharp sense of judgement on the right course of action even when the problem is somebody else's. I think you still have some more bullets in your back pocket : Xofigo, Xtandi, Chemo monotherapy, Chemohormonal combination, changing chemo drugs, Retreatment ( Trying previous treatments ), LuPSMA ( not quite sure whether it is available for you ), Immuno therapies............ On buying more time, hopefully some breakthrough drugs may also come for your rescue, especially those target drugs for mapped gene mutations.

Anyway, I was sad to hear that Zytiga couldn't do much for you and testing for ARV7 would be a wise thing.

Best wishes, my prayers and everything for you.

Sisira

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Yost

You're a gutsy guy. Keep chopping!

Best,

Bob

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Perhaps Zytiga is still working where it's supposed to but the cancer is growing from somewhere else where Xtandi might work. So what if you did chemo to clean wherever it can, and then take zytiga and Xtandi together with Lupron. Hit it with all you got. It has worked for me. I enjoy all your posts.

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Many prayers and positive vibes your way. You're a huge positive source for me in going thru my dad's journey.

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Sorry to hear that Yost. How long did Zytiga work for you? I just started Xtandi August 15 . So far so good no significant site side effects except a little more fatigue. And the same question, how long will it last? Best regards and good luck!

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I used Zytiga November 2014 - August 2017. It was a pretty good run!

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Yost - here is hoping you are able to start another good run!! Prayers and thoughts for you as always.

David

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That's exactly the same pretty good run I got, Yost!

Neal

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Thank you for sharing your story. I hope you find a solution soon.

I'm relatively new to this forum, but, 7 years into my PCa ordeal. Fortunately, I am in a "happy face" period where Firmagon and Xtandi are working. However, it is likely that will change at some point in the future (hopefully, the distant future).

The info you have shared is helping me and scores of others make treatment decisions.

Thank you and Good Luck!

Tony

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Yost, It seems like a dark day when you have to step into the next round of treatment. At least it feels that way for me. As previous brothers have said you are a huge asset to our group!! Your knowledge and compassion are indispensable to all of us. Sending you fun vibes for your NYC trip and healthy energy for your pain. Keep your head up and keep on living.

thank you for all the information you continue to share. Your advice and encouragement has helped me many times feel that the impossible is truly possible. Same to you brother there ere are lots of options left!

Charlie

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Hang in there Yost. We are all pulling for you. When it's time for chemotherapy, then I know big relief with positive outcome will come your way.

Nick

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My hubs got a second hit off of Zytiga after two years being off. Fyi--he suggested it to his doc and doc said ok. Have you checked in to Lynparza (Olaparib)? On the fun side, if you are a sweets guy, check out Serendipity 3 in NYC. The Frozen Hot Chocolate is the BEST!!

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Thanks! I will add that to my running list of conversation points with my MedOnc. You know, we've tried going to S3 and usually found a line. Maybe we'll try again. Now that I'm weaning off prednisone, I'll have more room in my diet for sweets!

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Re challenging with drugs that have worked in the past is certainly on my agenda, I did re challenge with estradiol 4 times and got a response, I will re challenge with xtandi after I have been off it for a year.

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Sorry you must seek another path. Good no mets. I am on my first 30 days of 90 with Zytiga. With insurance I paid $2,555.38. I am interested in what you have and willing to reasonably compensate you. Enjoy the Big Apple.

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As an aside, with no guarantees--My Geneticist and I had a long talk about the ARV7. We discussed that when it is in a positive position--which means Zytiga and Xtandi has limited use--and when in the negative position the drugs both of them, tend to work. So If Zytiga failed it is possible, but not certain Xtandi may work for awhile and also fail. But everyone is different and I pray right now that you are different.

Now my geneticist offered some tunnel light at to reversing the ARV7--when the drugs fail.

She reports that a short course of Chemo can many times then allow Xtandi and Zytiga to work, Also it has been shown that High T use--like the BAT Program does the reversal sometimes, as well as DIM, Pygeum, high dose Curcumin compounds{super Critical extract of Turmeric]--as well as adding Metformin at a minimum of 2,000 mgs per day. These are not guarantees, but I have researched the efficacy, with my Geneticist and the research papers, and there are documented cases of reversal--so that Zytiga and Xtandi can work again. Most of the positives, come after a short Chemo course. I hate the idea of Chemo--so I would combine all the supplements above, with Metformin first. An interestingly I take all of the above now anyway. Just reporting. Not recommending.

Nalakrats

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Hi Nal,

Zytiga worked for Yost for the better part of 3 years, the same as it did for me. Isn't that a good enough run to indicate ARV7 is in the negative position?

Neal

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3 years Really good, as if failure is certain; it usually occurs in 6 months--unless you have an ARV7 test that shows it is turned on then would you want to waste your time and money? And Side effects!

This is a very complicated subject, now borrowing from my Geneticist, reading between her lines, of conversation--a run of success like 3 years did indicate your AR was probably in the off position. But something biologically happened that turned in on after 3 years. Does it turn itself on and off, by itself, A scientific researcher would be looking for cause and effect. What caused the new effect? We do not know, but we do know, as I posted on this before, that chemo, and certain supplements in high doses can reverse the position of the ARV7. My PRCI advocate, I had when first I was DX. Went 2 years on Xtandi---lost its effect--did some Chemo, and Xtandi worked again now 6 years. Interesting example. We do not know the cause and effect of the chemo either, and how it worked.

Lots to learn!

Nalakrats

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Thanks, Nal. But is a change in the ARV7 the only reason that Xytiga or Xtandi fails after working for a good chunk of time? I just had my first PSA on Xtandi & it's down. So if ARV7 is the only factor, mine switched on to end my Zytiga run, but is on again, if it's the only variable.

It's great to hear how well you're doing on your 2nd Xtandi run!

Neal

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You must have mis-understood me--or I screwed up typing, I am not on Xtandi--it was an advocate of mine who got the 2nd run.

I do not know the answer. My Geneticist lumped Zytiga and Xtandi in the same class of drugs that work/do not work when something changes in the AR. Calling it positive and negative---sounds like we are talking about something electrical, in the AR. I have written on this from intuitiveness without proof. And my Geneticist cannot tell me either, other than there is a change that happens, biologically, that allows these drugs to work/not work, as something effects the AR.

Nalakrats

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i have postulated, that the biological change may be one of the Pca cell, in order to survive the onslaught of Xtandi or Zytiga, develops an ability to repel the drug--not allowing contact of the drug to the AR. It is like the Pca cell can turn its back and by some method, related to electron bonding or electron repelling--[failure stage repelling], [working stage bonding]. I have got a little too far here, in the electrical balance of the PCA cell, and the electrical balance of the drug. It is a complicated subject---and if I go too long on this I will get a bunch of responses from Martin.

Nalakrats

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From what I've been reading, the mutations in the AR are thought to be in the majority when it comes to PCa developing resistance. There are also neuroendocrine characteristics but these are thought to be much less, maybe around 20-30%.

Cancer has a completely different time scale when it comes to evolution. We are not on a level playing field when we are fighting with it. Cancer cells reproduction is measured in hours. And the cells that mutate to provide a growth advantage will take over. It's survival of the fittest on a small scale, every cancer cell for itself.

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Interesting gregg57!

Nalakrats

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Certainly very interesting! Sidnw was on Zytiga 8 mths. and stopped working..then Provenge..sicker than ever. going on Xtandi. Good to know that Zytiga may be tried again. You fellows really know so much! He just got out of hosp. with an infection not to be found,,temp. of 101.4....2 antibiotics thought liver but after tsts. No....Xtandi now..hope it works....You all seem to know a lot. Thanks for posting.

Sidnw(Shyrlene, wife )

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Hi Yost,

I reached the end of my Zytiga road earlier this year. I offered 2 unopened bottles to my local Advanced Prostate Cancer group. Although I got no takers, a leader in the group put me in touch with the leader in a nearby group, & he did have someone I was able to pass the expensive critters on to.

I've had Provenge since stopping Zytiga, & started Xtandi, which has reduced my PSA after 4 weeks. Hopefully I'll remain eligible for Xofigo. My doctors haven't seen the evidence yet in favor of combining treatments.

Good luck!

Neal

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Yost,

I have followed your journey more from the "sidelnes" for many years, I am mainly on Healing Well., but this is also a great site. You have been very inspirational and supportive of others, and now let us inspire you. Your great response of three years on Zytiga lends me to believe your future treatments will also be responsive. So hang in there, keep the faith, talk you you soon. I am sure you were and are your Doctors star patients ,as I have also become.

I am having occasional very minor pains in my rib met but not to a great degree. Giving out your unused product is heroic , just as another here helped me out when I was between insurance last year. I was beside myself with concern by missing 10 days last October.

Here is my stats-DX PCa -Nov/12, age 57-Biopsy revealed-GS 3+4=7 and 4+3=7 w/ four mets PSA=71.2

Start Lupron , PSA =

1/13=2.7 2/13=0.7 3/13=0.2 6 /13=0.1 9/ 13=0.7 11/13=1.4 12/13=2.7 4/14=2.7

6/14=3.8, 8/14=5.2

Started Zytiga-PSA=: 9/14=1.4 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06 9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06

3/17=<0.06 8/17=<0.06

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Yost, lots of stuff already said, my wish for you is that the pain goes away and another treatment gives you more time!

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Yost, I am leaving hospital later today after a week here. I had taken Zytiga..no side effects..with Prednisone. At that time it brought appetite back and worked for 7 or 8 months. then stopped..no appetite for weeks. Provenge then. Finished in Dec. and was and am worse than ever now. anemic also. had 2 blood transfusions at hosp. Drs., including infectious disease Dr. thought ..liver, but after tsts. they said liver ok. I had fever going in and took 2 antibiotics. fever down. They don't know cause. Started on only 1 Xtandi pill and hope no side effects. Have also been getting Procrit from Onc. every wk or 2 wks.

I have to write to Dan who wanted to know my RBC and wbc, haven;t found out yet. They are slow in telling me but I wd. thk. after 2 transfusions It wd, raise my RBC. was to tired t write at all tonight but saw your inquiry abt. Zytiga. Good Luck to you.

Hope xtandi can help as uch as Zytiga for me.

sidnw

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So Sorry You've Been Feeling So Bad sidnw. Wish And Hope The xtandi does wonders for you and procrit too. Sending healing thoughts your way.

Most Sincere,

Jackie

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