2nd line of treatment?

[ucladany]

If Zytiga stops working, what is the next treatment protocol? So many in this group seem to be doing well after the 1st line of defense stopped working. I am on Zytiga, Lupron, and Prednisone. 8 and 1/2 months of treatment. PSA still going down, now at 0.141 from 702. Testosterone at 10, down from 335 and the alkaline phosphatase number is 108, was at 1855. Any help would be appreciated. Thank you and keep on fighting my Brothers.

[Shooter1]

Sounds like you have reached the wait and see stage.None of us like to just wait. We want to keep fighting, so then you talk to Dr's,. discuss your options and move on. Sounds like you have had no chemo or radiation. May never need them or be stable for years as you are. Good luck and hope side effects don't bother you too much.

Doug

n

[ucladany in reply to Shooter1]

Shooter1, Thank you for your information, I appreciate you taking the time to help me. My Gleason score was 7, 4 +3. Seems a little low when I look at my PSA number. Next lab work and meeting with the Dr. is July 11th, a little nervous. A good thing about the City of Hope, blood work and then an hour later when I meet with the Dr. he has the results.

[MontyB]

For me the next treatment will be Xofigo (Radium 223). I was on Lupron, Zytiga, Prednisone, and my PSA started to rise. Scans showed a small progression on some of my bone mets. My MO stopped Zytiga and Prednisone while having me continue the Lupron. I have had Docetaxal and Provenge prior to the Zytiga. Have not had any previous radiation. You too...keep fighting!

Take Care,

Monty

[ucladany in reply to MontyB]

Thank you for your treatment plan, I just want to know what my options could be. Working on a positive attitude, exercising and watching what I eat. All my best MontyB

[Mathes72 in reply to MontyB]

Monty,I have had the same treatment as you,had my prostate removed in 2012,as of yesterday my spa is 5.7my mo is taking about rad 223 or jevtana, will have scan in a couple of months,i have taken zitiga,pres.lupron,xgeva chemo provenge ,the past year psa was 0.1,I feel like can not get a break,will keep on keeping on,was are not alone that is what is great about web page

[MontyB in reply to Mathes72]

Hey Mathes,

Yep, no question...let's keep on keeping on...keep fighting. Great web page. Considering starting a thread about and asking for any info or experiences with "RIght to Try" options that anyone would be willing to share....unless someone would start it before me (hope so).

Will message you.

Thanks and Take Care,

Monty

[Mathes72 in reply to MontyB]

Thanks monty,i feel better now,i quess i will not die next week,i ma y go to Duke university for some trials,have to think it over,an talk it over with my mo

[Tall_Allen]

That is a great response to Zytiga! The standard is to keep it going until it fails. But an excellent response such as you had is certainly prognostic for long term success with it.

[ucladany in reply to Tall_Allen]

Thank you so much for your post, gives me hope for the future.

[ucladany]

Without people like you, this road would be so much tougher to manage. Thank you for your help and encouragement. More kitchen sink? Not sure what you mean. Thank you

[leo2634]

Hi Danny I just had my five month check up with my MO this morning. I am also on Zytiga,Prednisone,and ELIGARD which is a fancy name for Lupron but injections every six months also as my first line of treatment. My Gleason score was 8&9 across the board with bone mets and lymph node. All my blood work was normal and PSA was undetectable. I am so grateful to my Doctor and his incredible staff for treating me like a family member and not just a statistic. The most important thing to remember is to keep a positive attitude cancer hates that. Best of luck in the fight Brother.

[ucladany in reply to leo2634]

Wow, great numbers. Congratulations, love your positive attitude thoughts. Thank you for your message. Keep fighting, my Brother.

[jobeth]

My husband had prostate cancer about 20 years ago. Radiation at loma linda and then no problems until about a year ago. PSA went up, doubled. No mets so started on Lupron. January PSA 2.6, February 6. Plus bone mets on scan in hip area. Started Xtandi. Felt better for a month or so. About three weeks ago, had lots of pain in hips. New CT scan. New mets in hip area with one in the hip joint where the leg attaches. Started about three weeks of radiation on the new spot to get rid of pain. Sees the medical onchologist the end of June to see what else they recommend. So far, what lasts a year or so for others seems to last my husband less than 6 months. Has anyone else had similar experiences? What has helped. We live in Southern Arizona about 45 minutes south of Tucson is anyone else has any specific experiences with specialists that accept Medicare. Thanks for any advice.

[Cancer09 in reply to jobeth]

You are blessed to have your spouse w that diagnosis for so long my husband lived for 6 years at the end he tried Xofigo for the bone Mets but depleted all his blood levels we had no issues w any Medicare or private INS companies. They have grant money for treatments. Everyday is a gift best of luck radiation does help w bone pain also

[Dalph87]

You can try Xtandi, although similar to Zytiga it works differently and might give you a good and long response. There's also immunotherapy with Provenge and radiopharmaceuticals like Lu177 and Xofigo (Xofigo if you have bone mets), then you can try chemo with Docetaxel or Cabazitaxel, after chemo sometimes you can try again Zytiga and Xtandi with a good response. I'm not quite sure but I read that in some cases there's a chance that chemo might make these two drugs effective again.

[Kevinski65 in reply to Dalph87]

I have the idea that complementary medicine (supplements) would lenthen the allopathic treatments. Here is what my numbers were; PSA 31, Gleason 9, 3 bone Mets, doubling time 5 months, stage M1. I was told 6mos to ,3 years. I was give Lupron and Casodex ( 2 weeks for flair) I took many supplements alongside regular treatment at first. I'm now almost 6 years out. My PSA is undetectable at .02. Original bone Mets undetectable. The lymph nodes have shrank. What I have been doing is taking 8 supplements at a time. I then switch to others. I study them for conflicts. Some can only be taken for 3 weeks due to liver burden. Xtandi was added 3 years ago. Do I think supplements help? It's not very scientific but scientific papers have been written about them. To give you an example, motherwort. U of Miami found it worked on nude mice. I got some at the vitamin shoppe after researching it's benign qualities. I made sure it didn't interfere with what I'm taking then down the hatch. There are many others. My hypothesis is that hormone therapy cuts off the cancers food... testosterone. and the supplements stop the signalling. No food, no communication might lead to dormancy. There are so many like 4 mu, noscapine, wormwood annua, blackseed cumin, dandelion, glucosamine sulphate , lycopene, and on and on. It gets costly so now I take Zyflamend for prostate combination pill. I also make my own from the spice rack with empty gel caps. I don't know if they're doing anything. I think though they might be helping Xtandi and Lupron last longer. I don't think supplements alone will hold back PCa. I am also not giving medical advice just sharing my experience. Kevin

[BigRich]

I am waiting for Your supplements Part 2.

Rich

[Litlerny]

You are having a great response to your current treatment protocol! Keep up the good work!

You might discuss with your MO adding whether adding bicalutamide or Metformin might help any, but bicalutamide comes with some rather vexing side effects.

[larry_dammit]

Looks to me your headed to right way, you didn’t mention if you have had chemo or radiation, what stage are you theses guys are good at helping good luck with your battle 😀

[ucladany in reply to larry_dammit]

The cancer has mestasticed to bones in my back, there is a spot on my lung and a spot on my lymph node. Does this change my treatment from what I am doing now?

[EdBar]

Xtandi would likely be another option and often seems to work if Zytiga fails. Chemo per CHAARTED would also be an option if you are metastatic. I believe in the kitchen sink approach that Nalakrats mentioned, for me so far so good, you can click on my profile for details.

Ed

[SsgCulldelight]

Hi it seems as though you will be UN delectable shortly, that's good. Hopefully the new genome manipulation program will be 100% effective soon, im thinking that'll be the way to go.

[mdiaz76 in reply to SsgCulldelight]

Can you share more about this genome manipulation program? Weill Cornell has my husbands tissues and I am not so sure what they’re doing with it they said they wanted to do some type of sequencing

[Kevinski65 in reply to mdiaz76]

The gene manipulation program is called Crisper Cas 9. Basically it's like word prosessing on the computer, you know, cut and paste. The scientists identify which parts of the DNA might be allowing the cancer through, and then edit the stem cells with the correct information. They're currently using it for cystic fibrosis. There is fear about what else might be changed in using it. The Chinese are already using it for cancer. This is concerning to US scientists who want to maintain the lead in cancer research. Kevin

[Cancer09]

Hi after this drug my husband tried Xtandi oral med and when that failed he tried many IV chemo treatments he felt the best on Zytiga

[Mpmeyers1]

I was on Zytiga and my PSA shot up. Doc took me off of Zytiga and now on Xtandi. Just started Xtandi, so no results yet, but i am starting immunotherapy called Provenge on 7/2/2018.

[Todd1963 in reply to Mpmeyers1]

Provenge is wonderful. I got mine beginning 5/01/2012

[Todd1963]

We are all different and so is the cancer we fight it but.......I have been on Lupron/intermittent casodex/ Provenge/Zytiga(last 5 years) for 12 years. Last PSA less than 0.01 you may not have to worry about changing up for many years. I do encourage you to pursue Provenge.

[Mpmeyers1 in reply to Todd1963]

Doc was hoping PSA would go down, but since it went from 7.6 to 29.7, Zytiga was discarded in favor of Xtandi. Been on Xtandi now for 4 days, and will get a PSA reading in about 2 weeks. Hoping that Xtandi works.

My records have been sent to MD Anderson Hospital in Houston, and looking forward to hear what they have to say.

[ucladany in reply to Mpmeyers1]

Praying that your PSA goes down. Xtandi seems to work well for many of our group. Keep on keeping on my Brother.

[ucladany in reply to Todd1963]

Thank you Todd1963, at my next appointment on July 11th, I will discuss Provenge with my MO. Keep on keeping on, my Brother.

[Magnus1964]

After Zytiga you could try casodex or Xtandi. All three of these drugs attack the cancer in a different way. Then there is Provenge as a backup if the cancer spreads to other parts of the body. I have had good runs with all of these treatments with a minimum of sides affects.

[ucladany in reply to Magnus1964]

Thank you for the information Magnus1964, I need to have extra ammo in the holster, for sure. Keep on keeping on my Brother.

[MHemmer]

Sounds like you and I are on the same track. I was diagnosed on Sept 12th. My gleason was 8 (4+4), PSA was 28. No bone mets, but extensive tumors in my lymph system. Started Lupron Oct 3rd and Zytiga around mid November. I changed my diet hoping to make some difference. PSA is 0.021 today and has been below 0.1 since February. I have the same question as you.

[ucladany in reply to MHemmer]

Brothers for sure. We will keep on, keeping on.

[Mpmeyers1 in reply to MHemmer]

Congratulations on the low PSA. What changes did you make to your diet?

[MHemmer]

My biggest concern is how long will this work. I see many talking about a lot of years. My prognosis is this treatment will only work for 2-4 years. I think the prognosis was based on my tumor doubling rate which was about 90 days. When I ask for an update based on my current status, I'm told that the prognosis has not changed.

So, I will keep on keeping on.

[ucladany in reply to MHemmer]

So many new treatments coming out. We will keep on keeping on.

[braddockroad]

Wow, I see we all are working much the same. Started Lupron in March. Casodex in April. Gleason 9. PSA had gone to 30 before treatment. Latest is 0.7. First scans show lymph nodes in pelvis and one bone met on pelvis. Received second opinion to stop Casodex and start Zytiga and get more recent scans. He would like to see my PSA lower. My MO's opinion is to wait on the Zytiga. I am thinking of going for it.

[ucladany in reply to braddockroad]

I was seeing a local urologist/oncologist and he started me on Casodex, but once I got accepted at the City of Hope, my MO there told me to finish my prescription of Casodex and then switch to Zytiga right away. Who knows for sure, all we can do is do what we think is best and to a point, trust the MO. I think if we believe that we are doing the best that we can and make informed choices, that is all that we can do. Keep on keeping on my Brother.

[Shooter1]

I've been getting worse and worse side effects for the last few months. Finally dug deep into fact sheet for Xtandi and found reference to Dr's about unacceptable toxicity. Said to stop treatment for a week and then restart at lower dose (80 or 120 mg) if necessary and add either prednisone or dexemethosone. Went to 120 mg from 160 and added 10 mg prednisone. by day three I was able to return to half way normal life. My wife commented how much better I looked and acted. That's when I told her I had made the change. Her comment was " I don't want you to live another ten years if you are in pain all day every day". Guess quality of life effects all those around you, not just yourself. Next week meet with Drs and have to tell them I changed dose. Should be OK with them since Xtandi was added at my request to start with. Got to manage your own case yourself sometimes. Sure nice to have some energy and have feet I can feel without constant pain and get the last knife out of my belly. Now day 6, doing yard work and changed oil in my RAV4. Even able to get up off the ground without climbing up something and be steady on my feet.

Doug-AZ

[ucladany in reply to Shooter1]

You are the man, a good lesson for all of us. Praying that you will continue to feel better and that the pain leaves your body. Keep on keeping on my Brother.