I am 46 years old. I was initially diagnosed 14 weeks ago with advanced prostate cancer spread to bones, spine, skull, lymph nodes. The cancer is widespread to my bones (everywhere I was told). MY PSA was 10,117 and Gleason score 4+4. I am on ADT, Steroids and Chemo (Docetaxel). I have had two sessions of chemo so far, with four more to go. My last PSA was 488, so has come down from 10,000 to this. I am so confused by the whole thing. I entered a clinical trial for Metforminn (the diabetes drug) but they have put me on the arm that receives nothing. Some of the questions I can think of is - should I be having Abiraterone as well? Should I have a PET Scan? Should I be having drugs to help protect my bones? Is Chemo, ADT and steroids good enough treatment for me at the moment? Is Metformin help against this disease (I am quite annoyed I am getting nothing on the clinical trial.). Any help appreciated.
Looking for advice: I am 46 years old... - Advanced Prostate...
Diagnosed Mar. 2017 extensive bone mets spine, skull, t-12 compression fracture, ribs, abdominal lymph nodes. Psa 59.9, alk phosphate 169 which flared to 202 after 1st chemo.
Night sweats disappeared after about 3rd chemo. (Apparently the chemo had knocked out the lymph node issue.) Bone scan 4 months later had multiple bone mets spine and ribs, no mention of skull met this time. Bone scans 1 year later regular and 3d show subtle mets (lesions) spine and ribs but intake on both hips and left femur. Did lupron every 6 months, 8 cycles chemo (orig. supposed to be 6), psa 1.7 at 8th cycle, started xtandi end of august 2017, psa now .3 (find out tuesday what new score is. Go Kancer Kickers, go team go. Chemo not so bad, never took nausea pills, but be sure and get imodium or generic, you'll probably need it (might as well pick up a new bag of underwear at the same time.)
8th chemo had me on couch binge watching tv as is cumulative, but good to go in 2 weeks.
Had shots for low neutraphiles, (ok, u try to spell that word), made bones in legs ache for 3 days, hated that. Developed a nice case of foot neuropathy after last chemo. Now taking 600mg Gabapentin for that but hasn't helped yet but sleep is better. Difficult urination went away after 1st. Chemo. But still up 6/7 times night. Now down to 2/3. Also taking prednisone with the xtandi. Don't seem to have the really bad fatigue others talk about with xtandi. May be the prednisone or my natural laziness, and I just don't notice. Getting tired of typing, so must go now. Also taking Xgeva from day one. Seems like you should be too. But what do I know (nothing the dr. seems to say.) What scares me that after watching this site for a couple of months, I'm starting to think I know more that the doctor. Good luck and buy ice cream/candy bars, cheese and crackers (got APC will eat all the dairy I want now). Snacks in middle of night are good. Use sheet as a bib.
Hi Firefox I’m sorry you’ve found yourself on this site but a warm welcome from us all. I am a similar age and also had an advanced diagnosis. You are having aggressive treatment and are showing a great response with such a huge PSA drop. There are many men with amazing stories on here to help you out. 👍
Hi Firefox, you are getting a very good response to ADT plus early Chemo. Your Oncologist might want to "let it ride" for quite a while before moving on to any other treatments, such as Zytiga (abiraterone). Ditto for Xtandi (enzalutamide).
I was similarly very metastatic and had a PSA of 5,006 at my initial diagnosis 4.5 years ago at age 65, before ADT plus early Chemo was shown to be effective for Overall Survival by some clinical trials. Lupron alone took my PSA down from 5,006 to a nadir of 1.0.
With many bone mets, I also took one or the other of the bone agents Zometa (zoledronic acid) or Xgeva (denosumab), and would ask my oncologist about those options if I were in your shoes.
Perhaps down the road you might learn/ask about your options to explore your inherited family genetics, particularly if you may have a history of cancers in your family. In a few cases, it might open-up other treatment/drug options.
Likewise for starting to learn/ask about possible Immune-type treatments, perhaps earlier rather than later.
Getting to a local face-to-face Prostate Cancer Support Group could be a good thing, too. The typical older geezers there (like me) need to see some fresh faces. Ha. Ha. Besides, I'm sure you have already seen the shocked expressions when someone relates having a PSA in the 5,000 - 10,000 range. And you will hear this one a milion times, too, "But, You Look Good!" Ha. Ha.
Right now, Nobody can precisely predict how long any of your treatments or combinations of treatments will remain effective. You are a statistic of "one".
There are several more treatment options available now than when I was first diagnosed 4.5 years ago. I later got some Provenge, and most recently added Xtandi (enzalutamide) for the past 1.5 years. My PSA rollercoaster has gone from 5,006 to 1.0 to 95 to 1.2, and is currently at 1.9. Life goes on. All of our paths have their differences.
Just some thoughts,
Sounds like you are on a good treatment right now and responding well. I was diagnosed with stage 4 too. I also did early chemotherapy, started with a PSA of 463 and went down to 0.19 in 5 months.
You can go on either Enzalutamide (Xtandi) or Abiraterone (Zytiga) after you chemo is finished. Hopefully your PSA will continue dropping to really low nadir. Thanks for sharing and keep us posted on your progress.
Sounds likle you have a lot of things going on and are getting good treatment, Firefox. If you are concerned or have questions about all the options, you may want to seek out a second opinion from a medical oncologist that specializes in prostate/urological cancers. There are a number of places around the US that can provide this, but try to find one where that specialty is the primary thing they do. There are dozens of new treatments and treatment combinations available now and literally a hundred different research trials taking place. It is extremely difficult for a general medical oncologist to keep up with all that research on a current basis so a specialist/specialty clinic will likely be a better choice. You're welcome to contact me for possible locations near your area.
Firefox and All,
just found this site today. read all your comments, and guess I'll chime in.
am 78 now, planning on going to 120.regardless!!
4 years ago had proton treatment ,45 of them (psa 9)
psa went on up to 54 (talk about a kick in the head)
cancer jumped to bones and lymph nodes
took a month to get chemo started; stand and wait,
psa then was 118 (what the hell!)
five chemo treatments later psa 0.04
no more treatment but xgeva and lupron
psa now up to 13
doc starting me on zytega.
what about canibis?
looking into rick simpson oil
also get the book" eat right for your type" Dr. P.J.D'Adamo (the small pocket size for 7bucks is enough information)
find your blood type at a health food store so I've been told they'll test, I had dog tags!ha!
gotta say though, no pain no after before or during effects
except no sex
hair growing wildly back
how come nobody mentions canibis??
take what I learned long ago as an army ranger, "don't ever ,ever,ever, give up!!
best luck to all of you
Welcome to this forum. You will see discussions of supplements that could be of benefit. Vit D3. Vit K2 with nattokinase for bone health and maybe to slow progression. Statins are supposed to provide a benefit. Coffee is good. I also take CoQ10, L-arginine and L-Taurine for heart health (I also deal with atrial fibrillation). You can run these by your doctor and see what he says. Good luck with the challenges you, and the rest of us, all face. You've come to a good place here anyway.
Firefox, your response to treatment is great. I would talk to your oncologist about bisphosphates tomorrow. I don't know how many fractures I have right now (at least four compression fractures, broken ribs and I've been using Zometa for a year. I'm waiting for a femur to break. You don't want any of this.