Progressing metastatic prostate cancer

I'm new here but have had Stage IV Prostate Cancer since July 2003. Originally 8 positive lymph nodes, Gleason 4+3, pT3b N1 Mx, PSA 33.5. Never have had physical symptoms but have undergone neoadjuvant hormone ablation, prostatectomy with extended lymphandectomy and then hormone ablation for 23 months. Off everything for 18 months then rising PSA up to 2.14, back on hormone ablation for 2 years plus salvage IMRT then off drugs for 36 months with 0.03 PSA for 18 of those months then creeping up to 17.77. This Second recurrence stopped with hormone ablation again as before... Bicalutamide and goserelin acetate for 15 months. Then first evidence of bone mets, PSA 0.29, Bicalutamide stopped but gaserelin acetate continued, immediately followed by Sipuleucel-T. Now 22 months later, March 2016 with 2 active lymph nodes, para-aortic and supraclavicular, and bone mets in 5 sites in spine and ribs, two within periphery of the spleen, and some concern for lung/pulmonary carcinomatosis. Starting docetaxel April and still on zoladex and zometa. Also no physical symptoms to affect quality of life. Last November did stereotactic body radiation therapy (SBRT) treatments to L3 spine but evidently that failed as bone scan still shows increased activity there.  It's a hope medical science can extend my life further. If someone is on a similar journey please let me know how it's going. 

[rhbishop2]

Are you eligible for Abiraterone? That has now been approved for use before docetaxel.

[xxCanadianCurtxx in reply to rhbishop2]

Also, Xtandi!

[Hidden in reply to rhbishop2]

I went through Abiraterone September 2014 through April 1, 2016. My psa is increasing so Docetaxel appears to be best choice now as I progress but still with no overt symptoms. Thanks for your input. 

[BrentW]

My story since diagnosis in 2004 seems to me far too complex to summarise in a paragraph or two, but you will find it here: yananow.org/display_story.p...  (I really must bring it completely up to date). Some of my experiences are (sub)parallel to yours.  I have no physical symptoms so far, but have had a PSA as high as 343 ng/ml.  Indeed, my PSA  leapt from 17 to 343 in just six months, which my doc is at a loss to explain.  Last month we had got it down to 82.3, after one month of Lupron and one of Andorcur.  Right now I am finishing up a month of Stilboestrol.  I have reached the point where my PSA no longer responds to any of these for more than one month without a subsequent break,   

[maack1]

I would expect that following the series of docetaxel/Taxotere accompanied by your continued Zoladex and Zometa that if PSA is not tumbling you would be prescribed either Zytiga/abiraterone or Xtandi/enzalutamide.  If your testosterone has been under control clinically castrate at or below 20ng/dl, then Xtandi may be the next best bet to hopefully block all androgen receptors from any testosterone or dihydrtotestosterone access.  If you begin to experience painful side effects from the bone metastasis, Xofigo/alpharadin/Radium 223 remains on the sidelines for consideration.

[Hidden in reply to maack1]

Thanks for your interest. I did Abiraterone from September 2014 thru February 2016. My testosterone has been under 12 since about March 2013.

[Raff5757]

I have had a similar journey except the medicines were slightly different -- Lupron (failed) and then Firmagon, xgeva plus Zytiga. This combo brought my PSA from 30 to .3 to .4. Then I had to quit Zytiga since it was messing with my liver. Changed to Xtandi, which is keeping my PSA under control. Have somewhere in the vicinity of 14-15 tumors on my spine, ribs and pelvis.  While on Zytiga several disappeared.

Have had the prostate removed by surgery. Also have had radiation a year after surgery, It has been a long and difficult voyage --but still no symthoms (when Lupon failed and my psa was approaching 30, at night I experienced pain in one place in my rib. Since then no pain from the cancer, lots of annoyance from the drugs....

[Dan59]

Rickdena,

You have done very well, I am in the same boat having been dx stage 4 M1 in 2006 at 49 years old.

I have some hip pain at night when I am tired , but it is gone in the morning after a good rest, always scared it is the cancer, but I think it may be arthritis  as it is not constant, my expert Oncologist tells be they can not really distinguish bone mets from arthritis on a bone scan. I am surprised they allowed you to have surgery, they did not allow me too.

There are many in the same boat as us here, keep the faith, live every day, sleep when you need to,  and most important to never ever give up.

Dan

[boc13 in reply to Dan59]

Ask your doctor about a sodium fluoride MRI/bone scan. I think there are only about 5 in the country and we are in ny at NYU. it picked up my husbands clavicle lesion right away and they are now monitoring him every 6 months with the scan. 

[Hidden]

Thanks for the input. I'm at USC (U of So California) where the school 'chant' is Fight  On! so that is what I've been doing. Prostatectomy was controversial but they provided logic so did it since USC is a teaching school supposedly at leading edge. Good luck to you and I hope you are getting super care. 

[Jonlaco]

Rickdena: You replied to my request about Dr. David Quinn and what a fabulous doctor he is and how much you love USC.  This has given me great encouragement and therefore I want to share with you my journey with stage IV PC.  Diagnosed 2013, Gleason 4+5=9, bone mets in L3, PSA 10.9.  I did not have prostatectomy because urologist stated that if prostate cancer is in the bones radiation of the prostate is the way to go.  I had 44 radiation to the prostate and 1 big hit to L3.  I also was given two Lupron shots, then was switched to Zolodex every month and Zometa once a month.  This treatment was given for a year.  PSA started to rise so the onc decided it was time for Taxotere (Docetaxel) and I had 6 rounds of Taxotere.  PSA dropped to 1.4.  Scans showed more bone mets but L3 was stable.  Never stopped Zolodex or zometa even after chemo was over.  Was going to have Provenge, but PSA too high for Provenge.  Started having major pain again in lower back, scan showed spinal cord compression by L3.  Surgery on back happened in Sept. 30, 2015.  Tumor was removed from L3 and plate was placed between L2 and L4 to support L3.  Sought treatment with Dr. Lebowitz in Century City.  2 round of chemo, Taxotere and Carboplatin, Leukine injection and fondapareneaux injections nightly along with Emcyt,  Dutasteride, Metformin, and several other meds.  Developed a GI bleed, into hospital I went, prepped for colonoscopy which caused a major A Fib episode so was hospitalized longer.  Back pain happened again in November, decided to quit treatments with Dr. Lebowitz and went back to original onc.  Scans were done and showed tumor on L3 was back, this was in December.  Radiation was done again on L3 which relieved pain but put me in a wheel chair because I lost my walking ability.  Was in the hospital  during Christmas and in rehab section for a week to acclimate to wheelchair life.  Started Jevtana chemo, had 2 rounds and 2nd round developed neutropenic fever, back in hospital for 12 days to recover.  Developed ileus  and still have not bounced back from the major antibiotic doses given for neutropenic fever.  Today I am very fatigued and no appetite.  I am seeking the expertise of Dr. David Quinn to hopefully give me some more time and quality.  Don't mean to be a downer or anything like that, but my journey so far is what is above in a nutshell.  If you have any other questions I will be more than happy to answer the best I can.  I was taking Xtandi for about 1 month and was told to stop taking it by Dr. Lebowitz.  I know my cancer is aggressive, but I want a long life story like other Gleason 9 men.  Hope has not eluded me yet.

[Hidden in reply to Jonlaco]

I hope you visit Dr Quinn soon....let me know.

You certainly have tried most of what is available....many things I have not heard about. Sorry you have had those comorbidities which definitely lowered your quality of life.....but you obviously are the tough it out guy.

What was your side effect experience with Taxotere (Docetaxel)?? I had my first infusion today. They plan on 6 or 8 but it all depends on my blood test results and maybe PSA after the 3rd injection. My PSA shot up from 14.87 to  27.47 in 2 weeks.

USC has a study regarding a special low calorie diet to be eaten 3 days prior to docetaxel and the day of injection. I am not participating since my diet is better and easier for me to manipulate to lower calories for those 4 days. Did you do anything special? How about your regular diet since diagnosis? Anything unique?

You get a hug from me

[Jonlaco]

Actually my experience with Taxotere (docetaxel) wasn't bad.  Fatigue and flu like symptoms about 3 days after the infusion.  They were mild.  My appetite wasn't much because my taste buds were really whacked out.  Food did not taste good and there was a funny taste (metal) in my mouth all of the time.  I did lose my hair but when it grew back it was so much thicker and fuller.  I would have to say my experience with Taxotere was not horrible at all.  Other than flu like symptoms and taste bud alterations I was able to function normally (well the new normal).  My diet during Taxotere was whatever tasted good is what I ate and that wasn't much.  Just be careful to stay away from people who are sick (colds, flu etc) because your white cell count will go down and compromise your immune system and you can get sick very easily.  I hope this helps and I hope you have a good experience with Taxotere.  Keep me posted please, I will be following you on this site.

[Hidden in reply to Jonlaco]

Thanks for the reply and good to hear you got through it so well. My hope too.

Keep me posted on Dr Quinn. By the way, whenever I email him, he is prompt with his reply.

[Jonlaco]

Thank you Rickdena. My wife's name is Dena by the way.  She has e-mailed Dr.Quinn once already and yes he was very quick to respond.  What a breath of fresh air.

[George71]

Have you heard about bipolar androgen therapy?

[Scruffybut1]

I was Dxd Stage 4 with around 40 bone mets. Too advanced for radio or even chemo. Only ADT. After 11 months PCa settled enough for 10 cycles chemo continuing ADT. Then bone and viscera scans showed me with 1 met left everything else clear so on to Zytiga (12 months ago) which has brought me to a constant 0.03 or 0.04. Still working. The chemo + ADT essentially killed the PCa and relieved my bones. Zytiga great still with ADT plus Prednisolone. All planned for me by my Onco June 2015 God bless her and her team. PSA began @ 200. Yep, there's always tomorrow but I can look ahead cheerfully rather than worry about today.

[Bebby1 in reply to Scruffybut1]

Can anybody tell me how prednisone works in conjunction with any drug

The only steroid my husband has had is dexamethasone prior to his two chemo doses of docetaxal?

[Bebby1]

Milk thistle has had global effects on hep c

How does it help in APC?

[jrr02]

Been through similar experience with slightly different path, prostatectomy 2008, hormone and bicaltumide for 4 years controlled well. Had radiation in prostate area 1 year after prostatectomy. Moved to Zytiga with continued hormone and denosumab quarterly injections. PSA spiked this past January, so petscan showed new metastasis in pelvis and spine. Started docetaxel in May and after 6 treatments no improvement in PSA and new petscan showed increased activity, so started radium 223 (Xofigo) this past week. Supposed to attach to bones and target that metastasis directly. There are more treatments available after this and I will get 6 of these once a month, then wait a couple of months for next petscan. Attitude is best defense against this evil disease. Keep positive, I am 70 and shooting for 80 at least.