Just rec'd report that Hubby's PSA is 2900-

[Kjmj]

starting MD appts now- but have not seen info on such elevated reports- anyone have info to share

[ctarleton]

Here's a short recap of my history. With some lucky/good responses to treatments, I've been a 4 1/2 year survivor, so far. The severe lower back pain that I had at original diagnosis melted away quickly with initial treatment. The mental/emotional aspects of having ultimately incurable Stage IV prostate cancer and re-learning how to live in the present moment have been at least as significant for me and my spouse as the treatments themselves, or their side effects. In some ways, I have changed for the better and the fact of my cancer has been an opportunity. I have found some face-to-face cancer/prostate cancer support groups to be helpful, too.

Charles

=======================================

Dx Nov 2013 Already Metastatic Prostate Cancer at Age 65

Numerous Bone Mets and Lymph Nodes, PSA 5,006

ADT Lupron + Zometa,

PSA Nadir 1.0

Resistance after two years.

Short rechallenge Casodex.

Oct 2016 Provenge.

Dec 2016 Start Xtandi, PSA 95

Sep 2017 Xtandi PSA Nadir 1.2

Apr 2018 PSA 2.0

[George71 in reply to ctarleton]

see article: -- Keytruda for prostate cancer -- at prostatecancernewstoday.com -- the article says that Keytruda after Xtandi works in 30% of the cases -- you should get gene tested for any gene mutations (there are usually many mutations when the cancer becomes castrate resistant. then immunotherapys work better.

[RyderLake2]

Hello from Canada,

My PSA at diagnosis was a tad under 1700. I thought I only had months to live. It has been five years at the end of May and my PSA is currently at 0.014. You need to find a good oncologist and get on an androgen deprivation program (e.g. Zoladex or Firmagon) right away. You need to get your PSA elevator to come down as fast as it went up. Do you have bone metastases? soft tissue? have you had an MRI? CT scan? Bone density test? Prostate biopsy? The last one is not fun! Lots of good information on this site.

[Kjmj in reply to RyderLake2]

bone hotspots on a CT scan for other issues were the trigger to get other testing, bone scan done yesterday- awaiting report- had first appt with oncologist who is ordering a bone biopsy to confirm- he has a long road ahead -I'm doing research for him as the RN in the pair-not my field of nursing obviously - expecting Urologist to be the one with the invasive tests and procedures

Oncologist is planning on Androgen Deprivation- as a start point once he has tests he is ordering

[ontheroad589 in reply to Kjmj]

a bone biopsy? Really? I think that is quite painful - when a nuclear med scan will show the hot spots from the mets without the invasive part. I have extensive mets and have never had a bone biopsy - sounds like overkill to me.

[Cynthgob in reply to Kjmj]

I concur on the bone biopsy. That doesn’t seem like the right move. Our oncologist did not biopsy the prostate either. She biopsied the lymph node near the pelvis as she said that’s where the cancer had moved. I hope you have someone to question these doctors as sometimes when they are in over their heads they request tests just to make them look like they might know what they are doing . Get to a really good prostate oncologist stat. 4300 psa to 6 currently . I wish you luck . This is not for the faint of heart.

[tallguy2 in reply to Kjmj]

I agree with ontheroad589. You might ask your doctor to consider a PET scan with the relatively new Axumin injection. This “lights up “ every place there is PC in the body. No bone biopsy required. I had it and learned about exact location in soft tissue and bone mets.

[Hidden in reply to Kjmj]

Urologists do prostate biopsy's. They are routine. A bone biopsy is not. He should find a urologist stat (meaning fast in med-speak).

[Hidden in reply to Kjmj]

I demanded casodex while I was waiting for insurance to approve the somewhat expensive eligard (ADT) shot, which took several weeks. Made me feel like I was doing something to combat the disease, and not just waiting.

[softwaremom00]

It is a scary number. You will be amazed that with treatment the doctors can bring that number down to less than 1. There are a lot of different treatments for Prostate Cancer. Get a good oncologist and a good integrative doctor. The oncologist will help with the medical part. A good integrative doctor will help you with lifestyle changes.. (nutrition..etc) You can get this beast under control.

Lots of hugs and prayers for both of you!

[ontheroad589]

I was 658 when dx in 3/2016. After Casodex, Lupron, 6 rounds of chemo, back on Casodex, continue Lupron, then Zytiga, then Xtandi, and now back to chemo this spring as of last week 6 rounds of chemo down and quite a few more to go, I reckon. My PSA jumped up to 2755 in early January this year, and the first 5 rounds of chemo this time have brought it down to around 1000, a 60% decrease in 15 weeks. I go for another round on 6/4, and we will see what it is then. Your hubby's PS will be all over the place but expect a steady drop during initial treatment..I got mine down to 1.49 after the first 6 chemos in fall of 2016 - my MO says that by the time you get where I am in the disease progression he is more concerned with how I feel, is my pain manageable, and what do the 6-8 months scans show...I am due for scans late June and while all of my soft tissue involvement got "cured" during the first chemo rounds a couple years ago, I have widespread and diffuse bony mets everywhere- from toes to skull - Zometa every 6 weeks has helped them to slow down and not progress as quickly. Your docs have a ton of tools in the toolkit at this point in the treatment, just be patient and things will improve quickly.

[Shooter1]

See, lots of good info here. You are not alone and have a chance for a good though modified future.

Doug

[Kjmj in reply to Shooter1]

yes- there is- TY all

[leo2634]

Hi K First thing is to find a doctor oncologist you feel comfortable with,then have all the tests done MRI bone scan, CT scan biopsy and find out what is going on. In my case as almost everyone on this support group was APC my Doctors put me on Hormone therapy Zytiga,Prednisone,Eligard injections plus Xgeva for bone Mets. My PSA was 14 now undetecable and I feel better then I have in years. The best medicine is a positive attitude cancer hates that. Be prepared for some changes in your life but the key word in that advice is "LIFE its not over. Best of luck Brother in arms Leo.

[Bobkar]

My brother was just diagnosed in February PSA 2800 now down to 200 we are waiting for the new PSA level this week. As others have stated please research your doctors and go to a cancer center which also does research and clinical trials. He started lupron and casidex at the same time and was taken off casidex when he started clinical trial the end of March. He’s had one chemo to so he has 5 more to go. Gleason score is 8 and he has bone Mets. You will learn all about these test over the next few days, keep educating yourself. Learning is power!!!! Keep us updated please

[George71]

see article: -- Keytruda for prostate cancer -- at prostatecancernewstoday.com -- the article says that Keytruda after Xtandi works in 30% of the cases -- you should get gene tested for any gene mutations (there are usually many mutations when the cancer becomes castrate resistant. then immunotherapys work better.

[joancarles]

My diagnosis on 07/2017. PSA 1390. Currently Zytiga and Prednisona. Psa of 05/2018 is 0.18.

Much strength and struggle

[Kjmj]

Thank You all for sharing info- I'm doing the reading and gathering of info- he's just trying to keep up the day to day- I'm a recently retired RN who never embraced Big Pharma - always looking to teach/ share holistic and alternatives more natural ways- so we are welcoming this tests time delay to learn all we can before choices have to be made for next steps

[Kjmj]

Oncologist is requesting bone Biopsy to plan treatment-and does make sense- to confirm it's linked to prostate- I would hate to begin tx thinking that prostate is primary and it's not