I'm writing on behalf of my husband, Mike, who was diagnosed four years ago. His initial PSA was 13.5 with biopsy revealing an aggressive Gleason 9 cancer. According to his urologist, he was (approximately) stage 2A. He had a relatively successful run with Lupron for nearly three years ( which became an intermittent treatment in those later months) as well as Tomotherapy radiation that lasted several weeks. In late 2016, his PSA jumped to 24 and by April of last year his new CT and bone scans showed mets to his femur, ribs, skull, and left shoulder areas. This was devastating news - NOBODY has ever uttered the words 'stage four' - and he began seeing a medical oncologist (versus the useless uro) who appears conservative in his treatment suggestions, putting Mike back on Lupron full-time. This past X-mas, it was obvious that things were worsening due to his severe lower back pain. Yesterday he had two separate MRI's conducted and they revealed spread in both the femur and spinal areas. I am particularly worried about the spine as he was told by the nurse he spoke with this morning that it's 'almost gone.' I'm sure those were not her exact words - his interpretation - but it's extremely concerning. We will meet with the oncologist on Monday to discuss Mike's situation - they are already recommending a different hormonal therapy, which makes no sense since they have deemed the Lupron useless at this point and the Casodex is clearly not working either. He will also need spot radiation for the mets. I am 51 and Mike is 64. Am I wrong in seeing myself as a widow during the next 12 months? I have done a lot of research, perused various forums, and asked question after question of the doctors he has seen, but now I feel as though maybe I'm just denying the inevitable here and I no longer know what questions to ask; I end up feeling as though we are left to twist in the wind. I guess what I'm looking for are any suggestions from fellow members regarding questions to ask and any experience you may have had in his situation. My hope is dwindling, but I also feel that there must be more that we can do. We live in Madison, Wi and Mike is being treated at the local cancer treatment center. Should we inquire about clinical trials? I feel pretty 'blown off' by these docs when I've asked my list full of questions, but perhaps I'm missing something too. Thanks for reading.
Newbie writing for hubby - more bad n... - Advanced Prostate...
Newbie writing for hubby - more bad news.
Getting to an oncologist is the right move...don't panic until you see him/her - doctors tell me - and, case histories here seem to prove -there is a lot that can be done... and, a MO is who to see about it. If nothing happens there, go to Mayo of Cleveland Clinic...I've been to Mayo - everyone is focused and serious, and research is at everyone's fingertips.
Don't panic. I've had bone mets since at least 2010. I'm 54 years old now. I have had palliative radiation twice--to ribs in 2014 and to spine over this past Christmas. I have mets in ribs, right femur, spine and skull. My spine is unquestionably a wreck, but at this writing, I have been off opioid pain relief for a week, and none of my doctors talk of "time left." Instead, we talk about what our next treatment will be once I finish Xofigo in early April. I think going forward it's important your husband have you or someone else in the room every time he sees the medical oncologist. The second set of ears (and questions) is useful.
Your husband still has options for treatment. Best to both of you.
We have been in the care of Northeestern since diagnosis. At first I was trrrified husbands back would break but the treatment he has been given has strengthened him. Currently off opioids for more than a week. Last chemo on Tuesday. They seem to be cutting edge on advanced prostate cancer. He did have some radiation on one disc. Lupron also. Currently in clinical trial. You aren’t too far from Chicago !
Hi: Sorry to hear about the progression of the metastasis. If I understood correctly your post your husband seems to have castration resistant metastatic cancer.
In general these patients are treated with Lupron or similar plus chemo associated or not with Enzalutamide. One option is to do the chemo and then start him in enzalutamide or the new recent drug apalutamide. These are thing to discuss with the oncologist.
He seems to need local treatment to the bone metastasis because of the pain and besides theexternal beam radiation he could be a candidate for treatment with radium 223, a systemic therapy which put radiation in the metastasis and helps to treat the bone metastasis only. This is another point to discuss with his oncologists.
If the cancer were PSMA positive ( the chances are that it is ) your husband could be a candidate for treatment with Lutetium 177 which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.
There are at least 3 clinical trials going on in the USA for castration resistant metastatic prostate cancer.
Please search for prostate cancer and lutetium 177 on clinicaltrials.gov
The first things is to determine if the metastasis are PSMA positive.
A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA and in other centers is the USA.
Please search for Gallium 68 and prostate cancer on clinicaltrials.gov
I was treated with Lu 177. My treatment was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.
The treatment can kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues. Very well scientifically documented treatment.
No despair, since there are some avenues of treatment for your husband.
Anything please let me know.
best wishes
Raul
Trials,
And there are many interesting videos online.
Sorry to hear about the new diagnosis, but hopeful that you are now with an oncologist who may be more likely to provide treatment options more suitable for metastatic prostate cancer.
After cancer cells may change and become able to grow despite the low levels of testosterone created by Androgen Deprivation Therapy (ADT) using Lupron or a similar agent, there are other drugs available which may help. One of them might be to add Zytiga (abiraterone acetate) to the Lupron, which could help stop testosterone that may be coming from other sources, like the adrenal glands. Another might be to add Xtandi (enzalutamide) (an oral medication) to the Lupron, which blocks androgen receptors. With bone "mets", an oncologist can also prescribe an agent to help protect bones from the effects of cancer cells trying to weaken them. One is Xgeva (denosumab) a shot, and another is Zometa (zoledronic acid) a periodic IV drip.
Things like Zytiga and Xtandi are very expensive, so you might discuss them ahead of time with the oncologist & staff, and with your Insurance Formulary, to see the extent of your drug coverage, and if any Prior Approvals or usage of a designated Specialty Pharmacy might be involved.
Other options may be found in the NCCN Guidelines, if you may have never seen them before.
nccn.org/patients/guideline...
Otherwise, .... having bone mets is serious, but not necessarily a cause to fear a very short prognosis. I had 20+ bone mets at my original diagnosis 4 years and 2 months ago with a PSA of 5,006. I'm still alive and kickin' with a current PSA of 1.7, and gratefully pain free. Everybody's journey is unique.
Keep seeking the best care available, and do keep posting to keep us informed.
This first year after a Stage IV can really be emotionally intense. "Let it out." It helps.
Charles
We are all here with you. Get second opinion and the third opinion. You are close to Mayo. Then MD Anderson or Sloan Kettering come to mind. There are a ton of options out there. My urologist described the current state of treatment protocols as the wide open west. Get the right cowboy.
I know the shock of being told you have stage 4 prostate cancer. I didn't bother with stages 1, 2 or 3. I worked hard to get through the shock as quickly as I could. Then I dug in my heels and put on my fighting attitude.
I would recommend getting an oncologist that specializes in prostate cancer on your medical team. I requested that with my general oncologist that wasn't specialized. That allowed me access to a regional prostate cancer specialist that I could talk to and e-mail any time I wanted more information or another opinion on something. I wanted to switch over to the prostate cancer specialist, but it wasn't feasable because of the distance for me to travel.
Don't lose hope, there are excellent treatments available and more in the pipeline. "Second line" androgen blockers such as Zytiga and Xtandi work really well for castrate resistant prostate cancer patients. There are people who have gotten many years out of these. There are also chemotherapy agents that are effective and have well tolerated side effects. I went through one of the chemotherapies myself so know firsthand. If I could go back, I would do chemo again without hesitation. It was quite a bit better than I thought it would be.
There are a lot of long-term survivors here who have been fighting stage 4 for many years. We are here with you because we know what it's like.
My doctor at one point told me my femur had cancer almost all the way through and it was dangerous for me to even walk around on it. I'm walking 2 miles a day now with almost no pain. There is so much hope, please don't despair.
Please keep us posted on your treatments.
Mike was told the same about his femur. Can you tell me what they did for you? This, along with the spinal mets, is a huge concern. He is already very worried about not being able to walk and won't be able to work because of the deterioration. Is this a surgical remedy or meds and radiation? One thing I forgot to mention in my original post is that he did indeed have the Zometa infusion several months ago; am hopeful that his doctor will recommend something 'more' this time around.
I have nothing done other than Zometa, one infusion so far.
My oncologist called me on a Friday afternoon with the bad news about my femur. Of course being on a Friday afternoon, I couldn't get any more information about it. But since I had absolutely no pain there, I wasn't that worried about it. On Monday my oncologist called back, telling me that the orthopedic specialist looked at it and said it was OK. He didn't think I needed surgery and thought there would be some healing with my cancer treatment.
But you really need a specialist to look at it and evaluate it. An oncologist doesn't know enough to make a determination.
Thanks, Gregg. I wasn't even thinking about other docs such as an orthopedic specialist; I suppose this will be added to my question list for Monday. Glad to hear that you are doing well. You've given me some hope 
Genny
My oncologist has a real positive atitude about these kinds of things. She said, "don't worry we can fix whatever happens, no problem."
My husband had one infusion a month, of Zometa, for a little over a year. It must have done something right! His side effects were awful and different every month so we didn't know if it was the Zometa or the cancer cranking back up.
Same here, blue - Mike was 'out of it' with flu-like symptoms for two days. I suspect that they may want him to have this done again - we'll see.
I didn't have any side effects with Zometa.
Lucky! He had no side effects from Lupron, ever.
I took off the day of his infusion and the next day because he was wiped out. I was so glad when they were over but they did the job. His Dexa scan was good 2 years ago and he'll have another one next month.
I was Dxd Stage 4, Gleason 9 (4+5), 40+ bone mets hips, spine, ribs, both scapulae, chest. No pain. All pelvic lymphs already lost fight with PCa.
11 months ADT, then 10 cycles Docetaxel chemo with ADT and Zometa. All Mets gone. 3 months only ADT then Zytiga added and still ADT plus Zytiga 18 months. Original PSA 200, now constant 0.03. Still no pain but ADT has now stripped cartilage from hips and knees. Hurts when I walk, sit or stand up. I take stairs on all fours and curse dog when on leash! I still love my bouncy Saluki. That's my life.
There are so many of us in this group both with similar responses to mine or better or sadly not as good. We have differing treatments and the two keys for me were immediate acceptance of the cancer, my decision not to fight it but to give my body to my MO and her team of specialists and let them fight it! I chose to let the cancer do what it wanted and to outlive it by boring it to its own death (with wonderful help). Has chemo not been used for your husband? With so many diverse mets I would suggest it should be an immediate port of call for 6-10 cycles. Don't worry. Be happy. Be very positive.
My original oncologist started me on monthly Zometa. Considering my original PSA of 5,006 and LOTs of bone mets, I was not averse to it. He thought it was the best thing since ice cream, so to speak. Of course, he could also bill it to Medicare and my secondary insurance each time, too. I never had any adverse side effects. Some minority of men do, and they often take Xgeva (denosumab), instead - a simpler shot, but sometimes not covered the same by some insurances. I had 29 months in a row of Zometa, and then insisted that it be rolled back to every 3 months or so. I probably have enough of it in me to last a lifetime. There's not a lot of clinical trial data on usage of either drug beyond the 3 year mark. Women on certain metastatic breast cancer drugs also take Zometa. Both agents in various forms are also taken in lower or less frequent doses by post-menopausal women for osteoporosis conditions ("as seen on TV"). They act in different ways to keep bones from being broken down so much on the "break down / build up" cycle of bones, and probably make them less susceptible or friendly to metastatic cancer cells trying to develop in bones and steal their resources for the development of the cancer.
Many thanks to those who responded to my post. When speaking to my husband earlier this evening, it appears that the larger concern has to do with his femur. This of course is very concerning to Mike as he is the 'team leader'/manager at his inside sales job, covers the insurance for the four of us (we have 21 year old twin sons still at home getting through college) and he is understandably worried that if his leg 'goes' that he won't be able to work and won't have insurance coverage. At this point, we won't know until Monday -- keeping fingers crossed that we get some good news and a radically different treatment plan than 'we're not there yet' nonsense. Clearly, we are 'there.' Thanks again - Genny
Chin up, Genny. Lots of people on this forum understand what you are going through. Will be thinking of you.
I had a a urologist also that spoke callously towards both my wife and I. I still think that he should not have let me go into kidney failure being under his care for 6 wks prior. I thought I had a malpractice suit. For your man ,It’s not over until it’s over. I don’t think that will be for awhile .Many have X been exactly as he is now only to get it in control once again. Correctly # 4 is serious but still can be dealt with. We all fight the same for. It is for live. 74 is young And 51 you’re still young. Stay strong and in touch. You can leed him thru. There is much to be done Andorra life to live.
Sorry 64 ,
Crucial not to give up now. Peace to you both .If it’s any consolation you are not alone by any means. There’s hope.
Thank-you for your support, Lulu700 Hope that you are doing okay.
I’m ok in a good place right now . I’m about 3yrs in. I’m praying for you both to get to a better place.
Hi. You’re paving the road for me, Genny. My husband had a biopsy in mid-December after a PSA of 34. His Gleason is 9. He was diagnosed 3 days into a brand new job that has no benefits. He just turned 65 though so he can get Medicare and a retiree’s Medigap policy from a prior longtime employer. Unfortunately, we’ve had a series of hoops to jump through to get insurance started and he has yet to get scans. I gave the gals at Social Security office whatfor today-all very calm and courteous, of course. Those scans are scheduled for next Wednesday. He’s getting them even if I have to sell my car to pay for them!
His urologist is basically preparing us for a stage 4 clinical diagnosis. I do appreciate your sharing and I’ll be learning along with you. One lesson that I’ve learned finally is that I need to be good to myself. I’ll be of no use to my spouse if I’m an exhausted wreck. I’ve been a caregiver before and was often reminded of the spiel we get on airplanes: put your own oxygen mask on before helping your children or others. His diagnosis has been a sharp reminder that I need to do the best I can each day to take care of myself - body, mind, and spirit. Sending you a virtual hug... Mary
I have been stage 4 for over a year with mets in liver lungs and bone. I am on ADT along with Chemo (Docetaxel and Carboplatin) . I suggest you ask the MO about adding the chemo regimen to your husband's treatment as it may halt the progression of the cancer as it has mine. All the best.
I can’t add much to the replies you have already received, but to empathize with you and your husband and wish you well. The battle isn’t ending, it’s just beginning. There is a whole arsenal of weapons that didn’t exist or weren’t FDA approved even 5 years ago. As Spiosa and Gregg said, I think it is highly advisable to get to a medical oncologist who specializes in prostate cancer as soon as you can. Living in Madison, you are not far from Rochester, MN where some of the best prostate cancer doctors and researchers are at the Mayo Clinic.
I’m 3 years into treatment for Stage 4 at diagnosis PCa, and doing well. I live near Orlando. The first thing I did was to dump my local oncologist and start treatment at the Mayo Clinic In Jacksonville. It’s a 140 mile trip each way, but worth the drive. My doc there has been very patient in addressing my questions and concerns. I’ve been on Lupron and bicalutamide continuously since June, 2015, and go in Monday for my 5th of 6 chemo infusions with docetaxel. My PSA has remained undetectable, my testosterone in single digits, and my one metastic tumor on my pelvic bone no longer lights up the PET scan. Despite the side effects of the treatments I continue to be blessed with a pretty full, active, and pretty much pain free life thanks to God, my wife, and my Mayo team. Counting today, I’m golfing for the 3rd time this week. The point is, there is life after a Stage 4 diagnosis. Continue to be proactive in the treatment plan, and if the cancer is aggressive, be even more aggressive in fighting back.
Go Pack, go!
If they don’t recommend chemo or radiation I would want to know why. Sounds like they have waited long enough. Chemo or should I say the day after shot is rough but better than dying. If they don’t want to get aggressive then find another oncologist to get a second opinion. Just my opinion.
And a good opinion, larry. Yes, I will be demanding to know why he isn't getting chemo as they have indeed 'waited long enough.' Just don't understand why everything they do is based on psa - now we have the new MRI scans as proof that clearly there's a need to do something new and different NOW.
Be waiting to see. Good luck. Tell him to hang in there 🙏🙏🙏🙏
Dont’t panic. Ditch the Uro and find a good Onc that really cares about finding a “cure/remission” that extend quality of life, not just PSA going down. I use the word cure lightly because at this time it is not yet in the cards.
No problem, Cmdrdata - we ditched that uro a while back. Totally useless guy, which is why I refer to him as the 'useless uro' now. Oddly enough, it was a nurse practitioner my husband saw about three weeks ago that I have the most respect for as she was the one who REALLY got the ball rolling regarding some immediate care - a morphine IV and Rx for some morphine pills - and also demanded some new scans. And the appointment we have is Monday -- quickest we've ever been seen. Hopefully, hubby will be on a new and very different path.
Nurse practitioners in our office have less of a work load and tend to listen better, I know every time Loren ( mine ) hears a issue from me she right after it. Love her ❤️❤️❤️❤️
Please try to see Alicia Morgans at Northwestern. She was my husband's medical oncologist before she left Vanderbilt for Northwestern. She specializes in Advanced prostate cancer, knows all about the latest treatment options and clinical trials, and believes in being aggressive when needed.
Good luck!
I have been stage 4 with widespread metastatic disease to bone and lymph in distant sites since June of 2006. I am of the opinion that what they think they see is always speculation until a biopsy confirms it. Artheritis looks the same cancer. It is important to continue with the lupron because though there may be some rogue cells not responding there is many that are. Adding zytiga, would appear to be the next option, unless they think it is not to late for early chemo,chemo should also be discussed, it has been shown hitting it hard early with the best weapons, brings the best results. Appalutamide was approved but in non metastatic, and response to xtandi after zytiga is better than response to zytiga after xtandi. An expert medical oncologist who specializes in APC could add years to life at this point. Do not panic, many of us live with stage 4 day by day, and we are here for you with any concerns. Learn all you can, knowledge is power against this disease, I wish you the best, please keep us posted.
Dan
Once the tumor recedes from the chemo , new bones will form and fill in. Maybe not the best bones but better than what you have now. My husband did not have a port and has done fairly well on chemo. One more to go. Find a good team at one of the teaching hospitals. You need cutting edge.
I’ve been in stage 4 for about a year and a half. Bone mets in spine, ribs, shoulder and left femur. They were initially concerned about fracture in the femur and had it x rayed. But it turned out to be ok. I had my most painful spot on the rear of my hip bone radiated with ten treatments. No more pain there and the last ct and bone scan showed some healing. I’m on chemo now having exhausted all of the oral chemos and I’m still here. There is so much they can do for your hubby so hang in there! I’ve been dealing with this for a total of 7 years now so just take things one day at a time. My oncologist told me that no one ever died of bone mets.
Sorry to hear of your husband's situation--but most important stay positive and select a good MO. I've had PCa for 16 years, have had bone mets for 5 and with Lupron, Zytiga (for 5 years) Prednisone, for PC; Xgeva for bone mets and now Xtandi for PC with Erleada in the wings the outlook for PC becoming a chronic disease is very good--so don't think Stage 4 or terminal or other negative thoughts!! Wishing you the power of perserverance from support of friends, relatives and this support group!!
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