Concerned Wife

Hello, my husband was diagnosed with Stage IV metastatic prostate cancer. He has some Mets on his spine and sacrum. He's Gleason 7 4+3 and has done radiation to his upper spine (cancer gone), he's getting Firmagon and finished his 4th round of Chemo (Docetaxel) . His PSA at diagnosis in March 2018 was 1900 it is now 108. I fear his PSA is not coming down fast enough. He doesn't have as much pain as he did before all of this. He's also doing quite well tolerating the chemo. Any insight is appreciated. I love my husband so much and just want the best for him. Thanks.

[Tall_Allen]

Wow! 1900 to 108 is quite an impact - congratulations!

[Grumpyswife]

Welcome, You will be overloaded with all the information, help and opinions offered here. This is a great website but very disorganized and not easy to use.

How old is your husband and where is he receiving his treatment? If you use the search feature here you will be reassured that your husband’s results are great.

[Hidden in reply to Grumpyswife]

My husband is 67 and in good health. He has had some side effects of chemo, but tolerable. His treatments are with MSK.

[Jscjac in reply to Hidden]

If your husband is being cared for at MSK, he is in good hands. It’s all very overwhelming and this forum will be invaluable to you. I am sorry it is necessary for you to join us, but you will be amazed at the level of support provided on his site and others, 24/7. Keep us posted. Wishing both of you strength and peace.

[Lombardi24 in reply to Hidden]

Good place to be. My care is out of MSK also. Just know he is recieving cutting edge care.

[Hidden]

That's quite a decline! As long as it continues to go down along with the pain it's good. A long, slow decline down to less than 1 is ideal. I know it's really hard, but it's best to just take one day at a time and not to dwell on the future. Hoping for the best for him.

[Hidden in reply to Hidden]

Hi Gregg57-just curious, why is a long, slow decline ideal? My dad’s PSA went from 64 to .2 within 2 months on Lupron, prednisone and Zytiga.

[TommyTV in reply to Hidden]

I had similar results, from 571 to immeasurable within 12 weeks. It’s stayed there for the last 6.5 years on the same drug regime as your dad, which looks like a real winner for some of us.

[Hidden in reply to TommyTV]

TommyTv-unfortunately these past two PSA’s have started to rise. He went from a .2 to .6 and then to a 2. Did your PSA ever fluctuate at all? Dr is waiting for next blood work before making a decision to go to chemo.

My dad is feeling great and has a ton of energy. The only thing he is having is an occasional hot flash and that’s it. He looks great and feels great so this rise in PSA has me baffled and I’m scared and concerned.

[BigRich in reply to Hidden]

Why is a long slow decline, ideal?

Rich

PS; I read if you can get it,PSA, below 1 within 7 months, you have a better outcome.

[Hidden]

There has been research regarding PSA nadir and time to nadir. You can google "PSA nadir and time to nadir" and get more detailed information. Of course these are statistics and we know that everyone is different. It's a bit counter-intutive that a longer time to nadir would be better.

In my case, my PSA dropped really fast from 463 to .2 in 4 months. I was really happy to see it drop so fast, but also a bit concerned because I knew about this research. It didn't stay low very long and started climbing fairly quickly. Now I'm castrate resistant, one year after diagnosis. Definitely below the median.

Here's one article on the subject:

ncbi.nlm.nih.gov/pmc/articl...

Conclusions

Nadir PSA and time from PADT to nadir were factors that affect both CRPC and overall survival in a cohort of patients with metastatic prostate cancer. Lower nadir PSA level and longer time from PADT to nadir were good for survival and progression.

[Lombardi24 in reply to Hidden]

And then there are cases like mine where the PSA never gets above 5.00 yet I have much activity and aggressive growth even with a low number. It never has far to go to drop to say 0.12 but will climb again fairly quickly

[Godschild62 in reply to Lombardi24]

Our oncologist told us not to focus on the PSA (my husband had bone Mets). When you're stage 4 it's not as important to get the PSA undetectable. She said that she's more concerned about his over all health and well being. She told us thy she had a patient with a PSA of 10K who was golfing all the time, and a gentle with a PSA of 50 and was bed ridden.

Here's an excerpt from the American Cancer Society webpage:

If the cancer has spread outside the prostate, the actual PSA level is often not as important as whether it changes, and how quickly it changes. The PSA level itself does not predict whether or not a man will have symptoms or how long he will live. Many men have very high PSA levels and feel just fine. Other men can have low PSA levels and still have symptoms.

I hope this helped! Blessings to you and your husband.

[Reptale]

Sorry to hear about your husband’s diagnosis. I know this is stressful for both of you, however it sounds as if your husband is doing very well. Reduction in pain and the eradication of any metastases in this disease is real progress. It sounds as if you are getting good recommendations from your medical oncologist. I hope he/she is someone accessible, since your concern about the PSA is something you should talk about. I do know that for certain cancers and certain patients PSA may not always be the best measure of progress. I personally find that it is tough to balance my desire for the best possible care with my need not to get stressed by things I have no control over, such as the speed at which (or whether) I respond to treatment. Your husband is lucky to have you fighting his corner. Sounds to me as if you’ll have each other for a good while yet.

[Schwah]

My only thought is to ask your MO about using Zytega now. Recent studies have shown that early use of Zytega after mets are diagnosed along with Lupron ( I believe firmagon is similar to lupron) increased survival time about 40%.

[TommyTV in reply to Schwah]

If I could find a way to post pictures, I have pictures of the Stampede trial here in the U.K., which back that up. It’s a pretty heavyweight regime, the total lack of testosterone certainly takes its toll on muscles and liver. I’ve been lucky, just my muscles affected.

[Darryl Partner in reply to TommyTV]

Here’s how to post photos support.healthunlocked.com/...

[Hidden]

I am in a similar situation to your husband, diagnosed sept 2017, with Stage IV, mets to spine both Lumbar, Thoracic and Cervical, and lymphs, as well as ribs, pelvic bones and right femur...it was bad...lol

Gleason's were "8" and there were a few "9's" PSA was 364 in Sept 2017, and it was doubling every 3 weeks, but it dropped to "27" by Oct 31, and undetectable by March 2018, and presumably that is because I am on Eligard (injection, Lupron et al, ADT etc etc) + ZYTIGA, which is kind of the "gold standard" combo, since a 2017 study showed incredible results. HOWEVER, Lupron + Zytiga, as incredible a combo as it is, is NOT a cure, there is no cure for Metastatic Prostate Cancer, but it does it's job of delaying disease progression probably better than anything we have available right now so it is something any patient with Metastatic Prostate Cancer should be aware of it, and discuss with their doctor. Ive included the article below. In some ways the results of this study were the "shot heard round the world", probably the biggest news in PC history. It is interesting to note, because i was not diagnosed until Sept 2017, i never had chemo, they went directly to the Lupron + Zytiga combo...If I had of been diagnosed in, say, April 2017, I would have almost certainly had chemo...once the results of this study came out, and the FDA approved Zytiga for non-castrate resistant Stage IV, it was game on, and it was ADT (Eligard etc) + ZYTIGA all the way. Link below

am.asco.org/adt-plus-abirat...

[leo2634]

I like "wattbc" have been put on Zytiga,Prednisone,Eligard injection+Xgeva for bone Mets as my first line of treatments. PSA was14.7 to undetectable in one month. I don't know if Zytiga is a wonder drug but has worked wobders on me.

[Litlerny]

Welcome to the club no one wants to have to join, but we are all happy exists, to share our stories, get some helpful info and advice, commiserate with and get support from the rest of us riding the same train. I’m sorry to hear about your husband’s diagnosis. I know how hard it is to grapple with both for both the patient and for his spouse/caregiver. And the first reactions are typically shock, panic, and the “what did I do to deserve this?” question. We have all been there.

Your husband is doing very well! Kudos!! He is having a great response to the drugs and chemo. And at MSK, he is in one of (if not the) very best place in the country for prostate cancer treatment.

Like your husband, I was already Stage 4 at diagnosis with one pelvic bone mets in May, 2015. My initial PSA was a relatively low 4.65 at Dx., Gleason 4+3=7, but the DRE and biopsy confirmed bilateral prostate tumors, and all 12 cores having cancer in them. A PET scan showed the bone hot spot, and so in the space of a month I went from being blissfully ignorant and apparently healthy to a Stage 4 PCa guy. I think my wife took it harder than I did.

Even though Stage 4 PCa is still incurable, There is hope! Even 5 years ago there wa not much to fall back on once ADT failed. But, they have made tremendous progress on the available drugs and treatment protocols since then. For example, 3 years ago, prior to the extension of the Stampede trial protocol to hormone sensitive patients, your husband would likely not have qualified for early chemo. And the research is ongoing. I keep The positive philosophy that the longer these new treatments are able to keep me alive, the more new treatments will be discovered, and the better chance I have to live even longer. Finding a cure for Stage 4 PCa may or may not come in my lifetime, but it is getting closer to being possible. Keep the faith!

I’ve been on androgen deprivation therapy (ADT) with Lupron and Bicalutamide since June, 2015, and recently completed a course of 6 cycles of Docetaxel. My PSA has been undetectable for the past 3 years, I have had zero bone pain, and my bone scans 2 years ago and on 7/13/18 showed interval resolution of the bone mets. And, although my energy level is somewhat low and my muscles just ain’t what they used to be, I still Golf 2-3 times a week and my other daily activities are (within reason) fairly unrestricted.

Best wishes to you and your husband on your journey.

[larry_dammit]

Sounds like he’s on the right path to me. Stage 4 with Mets in ribs,spine and lymph nodes here. The chemo has a tendency to raise the PSA before it can come down . The whole thing is to be patient ,it’s hard I know, my doctor wouldn’t do a ct with contrast until I had completed chemo by 6 months. Hardest 6 months I ever had. I do go in every 30 days for a full blood panel and a eligard/lupron shot and a Xgeva shot. Just don’t be afraid to talk to the doctor 👨‍⚕️ or his nurses. They are there for you. My nurse practitioner is usually easier to talk to as she has more time. 2 years since my fight started Fight the good fight ❤️

[Hidden]

Your husband is doing well and on the road to many more years together. Stay positive and shun negativity. Unfortunately, in my opinion, prognosis from this bastard of a disease is dependent on many factors. Comparatively anyone in 2004 faced a norm of 2-4, maybe 5 years versus today where these numbers are tripled. Great strides have been made with research, introduction on new drugs, methodology of the medical profession, and the skill and knowledge of your pro. Even today there is no total treatment consensus, and, there is no agreement on the "best" way to cure, only palliate.

Unfortunately, too many men discover that they are metastatic upon original diagnosis long after the tumor burden has grown. Shame on the U.S. Preventive Services Task Force. Supposedly an independent panel of experts in primary care and prevention who systematically reviews the evidence of effectiveness and develops recommendations. To date not one Medical Oncologist let alone an Urologist, and their recommendation is: "The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer." Yet this same group of people recommend cervical and breast cancer testing at age 40 for women!

Fact: "Prostate cancer has become the third most common cause of cancer death in the UK, overtaking breast cancer, despite improvements in survival rates for both. ... However, new figures reveal that 11,819 men died in the UK from prostate cancer in 2015, overtaking breast cancer, which resulted in the deaths of 11,442 women." The US statistics are rapidly closing to match those of the UK.

Early detection when the body is strong and the tumor burden is minimal are important in the treatment of genitourinary cancers! I make this statement as a man with a Gleason 7(4+3) at age 56; Stage 4 Metastatic PCa at 57; six month chemo trial with two different infusions and four different orals; able to stop Lupron injections at age 63; and today at 71 remain undetectable with a T of 565 with no medication nor supplements except 4 mg of Androgen twice a week to add testosterone as I lost the ability for my body to make its own. I have been most fortunate.

Gourd Dancer

[Ian99 in reply to Hidden]

Very encouraging story. Thanks for that. I hope it’s still working for you.

[Darryl Partner]

Since you seem to near MSKCC, your husband is welcome/encouraged to attend the nyc Prostate Cancer Support group. Schedule at: malecare.org/nyc

[j-o-h-n]

Remember God is in your corner.

Good Luck and Good Health.

j-o-h-n Tuesday 07/24/2018 10:16 AM EDT

[TommyTV]

Tried to post a picture , but it looks like I’ve started a new thread. Sorry about that.

[Cancer09]

I understand your love and concern .thats a great psa after being so high .just take a notebook .take notes on all results ..ask questions .we tried so many options.Never give up hope.remember Everyday is a gift ..i pray for a cure .

[Hidden]

WOW! Thank you all for your encouragement, information, experiences, thoughts and prayers! I appreciate it so much. I have been given a bunch of hope for the future and the present! You see, I'm in a difficult position. My husband has asked that I not go to his appointments with him. It's very hard for me to not be involved; however, I respect his wishes. He does openly talk to me when he's finished with his treatment and returns from his appointments. He has also given permission to his providers to speak with me. He's chosen not to go to support groups. By the way, his PSA was 1004 and not 1900. I do share with him what you all have said and he listens. Your support and kindness is most appreciated. Enjoy the day to it's fullest and I wish all of you the best in life and good health!

[j-o-h-n in reply to Hidden]

Tell him if he doesn't take you along to see his doctors then you won't take him along when you go shoe shopping. That'll get him for sure.

Good Luck and Good Health.

j-o-h-n Wednesday 07/25/2018 10:03 PM EDT

[Hidden in reply to j-o-h-n]

I needed that laugh! LOL