He went in to out patients with constipation and they found spine bone mets. His PSA was 1300. He was otherwise healthy so this was a shock. He did have back pain but had back pain for more than 20 years so assumed it was just that. He had lost some weight as well, but the doctor told him it was likely a stomach bug and sent him home. The shock and pain of the diagnosis was unbearable.
He had a hormone shot the next day (Firmagon). In 4 weeks time his PSA was down to 274. He was then put on a 3 month depot shot of Eligard. After another month, his PSA was at 255. Zytiga was added a week later and his PSA was taken 2 weeks later and was at 237. It doesn’t feel like it’s going down fast enough. At this rate, it would take almost 2 years to get to a reasonable level. Is this normal? He is 49 and I believe his PSA should be around 3. Does this mean that the cancer is still growing? What other options might his oncologist take to get the PSA down?
His bone mets are also either getting worse or he is more aware of them. I am aware of, and can feel them in 3 locations in his spine, in his hip, in his skull, shoulders, and arms. They said it was everywhere in the bone scan. In the last 24 hours the pain in his lower back has increased and he has pain and numbness in his left calf. Maybe a pinched nerve?
He’s getting forgetful as well and depressed. He’s been so brave and positive and this is very out of character for him.
We don’t see the oncologist until next Wednesday, the 2nd. Is all of this normal or should we go to emergency? It doesn’t feel right but I’m new to this. We only got the diagnosis in October 2018. Please help!
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Monkeymamma
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I live in the USA and I’ve never had the # for any Doctor... besides their answering service.. here they make much money and take little time to address the patients worries and fears.. cut and dry.. up to us to navigate survival in spite of the systems that entwine us..the entire cancer approach is seriously flawed.. chemo is not that horrid tale of old. Many guys have been thru it with success..
I have my MO's personal number. He also let me know that he was on his way to Oregon for the holidays. If I needed him call or email . Also told him about the problem I was having getting zytiga and navigating the paperworkpart of things. Next day a physician assistant & patient assistance called me to take over issues.
He resisted the idea of chemo and will likely take the news hard if that’s the next step, but if it works, then it’s well worth it. He just doesn’t want to look and feel like a cancer patient.
my oncologist who works fro cancer nw suck especially mine. not sure if they and urologist are about equal. there is a ctr in seattle and thats all they work on not as i call them maintenance doctors
Chemo along with lupron was my first line of treatment. After 4 rounds of chemo my PSA was 0.1 from 415 after diagnoses in March 2017. My Onc has been pleased since my PSA is holding at 0.3. Chemo was tolerable and I would do it again if I had to but my Onc said that would be years from now. He is young enough and would do well with chemo.
Hubby had 4 cycles of Docetaxel and 4 Jevtana. He never lost hair on his head or eyebrows. Only on his arms, legs and chest. He did lose weight but everybody (even the doctors) told him how good he looked. If chemo is your next treatment, make sure he has alot of green vegetables. I am sure this is what helped keep the immune system strong during chemo.
It seems like there are a lot more treatment options in the states though. I guess it’s a catch 22. We pay less, but have fewer options. You have more options but less financial assistance. I am thankful for Medicare and a decent insurance plan but it’s still very expensive for us, so I can’t imagine what it must be like in the US.
my zytiga costs about 10,600 a month i pay 0, the new treatment since 2006 is around 1 time 3wks use is around 72,000 not sure if thats for each treatment or all 3 it cost me 0. u really have to spend time contact agencies low income etc to get any answers. whatever u do don't depend on a cancer to do that they don't care. we have a patient advocate and they are the ones who find foundations or whatever u might need.
All of our doctors in NC are using electronic medical records and can be reached via a portal. Our MO has given us his email address and answers any question within 24 hours.
That is not true.......we live in Canada and my husband has telephone numbers to both his oncologist radiologist and oncologist urologist from the Ottawa, Ont Cancer Institute! The radiologist called him personally at home!
Not sure which province you reside in, but each province has a doctor lookup site for you to access your physician contact information. Let me know which province and I will provide you with a link.
Here is a link for the site of the College of Physicians and Surgeons of New Brunswick: cpsnb.org/en/find-physician.... Hopefully you get in touch with the oncologist very soon. It is the holiday season, but some things can't wait. If your husband gets really bad, do not hesitate to call an ambulance to bring him to the hospital. No sense in having him wait in a crowded waiting room when he is in pain and needs to get this managed pronto.
We are outside of Vancouver. I pray all is good and that your husband goes and gets help immediately. Don’t wait as mine did. Unsure what to do then call ANY number or doctors offices you attend. Even after you go to ER. Praying for you and your hubby.
With multiple mets, chemo is a good next step. If possible, he should ask his onc. to biopsy a bone met for an immunohistological examination. That may provide guidance as to whether a platin is necessary, or a clinical trial. SBRT to the spine may prevent spinal compression.
Our MO prescribed Celebrex and a codeine tablet for the aches and pains experienced after chemo. Just before Christmas the Oncologist prescribed Fentanyl (morphine) patches. These last for 72 hours. They really helped. He only used them for about a week and now has not had much pain since. Your clinic should be able to give you a prescription.
If there is truest numbness, then it CAN be an emergency if there is spinal nerve pressure. Heavy steroids can take the pressure off until spot radiation can be done to that spot on the spine. Or worst case, then can do RF ablation immediately in the hospital. Spine Mets are no joke. Certainly chemo is the next step, but pay attention for signs of spinal compression.
We just got home from the hospital and they said there is no neurological impairment. Thank god!!!!! They said it is his mets that are pushing on his spine. I thought they’d have shrinked by now but I guess not. I also asked how long it should take for the bone to heal and they said longer than normal and that they may have just healed in whatever position they were in which could also be a source in pain.
That’s some serious stuff . Pray that spine area heals up.. God bless..
How could anyone get used to all of this... ? We all suffer..being forgetful and depression can go with the turf. I’m not the medical expert.. others will lite that path for you... At 49 he s still a young man .. his PC is aggressive .. I pray for a turnaround .. some times you need to throw the kitchen sink and whatever it takes.. at a tenacious Pc .. it’s no Pleasure cruise for those that love us either.. losing ego and or old male I’d can be a mind blower. I was 53.. Not easy for such relatively young men ... You must remain strong and well yourself if you’re to survive also..he is hit hard physically with treatments that strip our manhood ,but emotions and hormonal deficiencies can disrupt the strongest amongst us also. So it’s a battle on fronts.. not just physical... Many will answer what moves to make now.. I welcome you.. Great that he has you as his advocate.. if not for my wife’s love I wouldnt have made it through my first year..of treatments.. There are so many treatments ..It’s overwhelming .. Chemo might be in the cards..keep his spirits up anyway possible.... don’t let him give up either .. God bless you both in this time of suffering and uncertainty .. Scott
Thank you Scott. It has certainly been hard. I love this man so much and it is incredibly hard to watch him suffer physically and emotionally. He says he feels so loved and cared for and that makes me feel so good because all that matters to me is that. But I will try to take care of myself too as you said. Every moment with this man matters to me. I am only 42 myself and have a hard time imagining the rest of my life without him. We will fight this hard.
I’m 57, wife 55.. at 42 you are super young for this normally much later disease .My heart goes to you both.. Together you will stand this test...Your love must concentrate on him to encourage and heal his torment.. All that really matters is that he feels loved ...You’ve got that down already..He’s under your lovin’ care. Rage ,fear,depression can all raise their ugly heads .. You must not “try” to take care of yourself . You must really live healthy to keep yourself out of illness ..the pyscological and hormonal issues are beyond torment at times... for him ..but you must find ways to shirk any negative friendly fire. We want you to be at Peace Monkeymamma. You have plenty of sympathetic ears here to lean on.
You’re never alone.. whatever you believe in , strengthen it.. Love him comfort him .. You are his blessing.. Scott...
I’m so sorry to hear about your husbands diagnosis at such a young age it hits you like a freight train. My husband is 52 and I am 44 so I’m a similar position to you. We also have very young children. It does tend to be an older mans disease and I feel the younger men sometimes feel isolated dealing with this disease and the cruel side effects of the treatment at such a young age. I hope all goes well for your appointment in the New Year, let us know your progress.
Ladies, I am in the same situation as you... my guy is 52, I am 51. He was diagnosed in Aug 2018... Our life has been turned up side down... I am so sad... paralized... going crazy, etc... WHY, WHY, are we living this nightmare?????
It’s certainly unfair. For me, focusing on caregiving has been a god send. It may sound odd, but every single thing I do to make him happy helps me cope. I know someday I will have to deal with unbearable loss, but he is here today and I want to enjoy every single moment I have left with him. And I want him to remember every day how much he is loved. When I focus on that, I have no room to focus on fear. Love and hugs to you MiHombre, Tonki25, and Lulu700. To everyone dealing with this demon called Pca.
My opinion is that APC in the 40’s or 50’s is a total life rip off .. Most get this in their 70s or 80s. Callously , I think that by the 70’s the old man’s disease is almost expected.. I was 53 almost four years ago.It was luck and Gods will ,and my wife that got me through my first two years.. lucky to be alive.. But a total game changer at and early age.. Apc is a freight train .. All Aboard! the APC train 🚂 .. Enjoy love and family as we can along the way.. Stay on top of the train. Peace..
I was 17 thanks to Nalakrats...he told me to eat 3 lbs of bacon and 3 dozen eggs a day...I am hunting him down in Fla..when I find him he is Gator meat...recent pic below if anybody spots him
I am 44 and my husband is 65. He was never a sickly person so it has been very difficult to watch him suffer. I now take vitamins and a tranquiliser in the mornings which has helped stay strong for him. In the beginning I was scared to leave him alone. But I now have a day every month where I make time to go and do my hair and nails and just get out for a few hours.
:-(. I too felt like that, but I have to work so I just call my husband a million times a day now instead. When was your husband diagnosed? How is he doing?
He was diagnosed as Stage 4 in May 2018. Agressive cancer. It is an emotional rollercoaster of note. We run our own business so it helps being around all day but also has its challenges. You have to as positive as you can. And call on family and friends when you need help or just a shoulder to cry on. You are bith so young.
After what I have experienced, I would definitely call nurse line. If they suggest ER, I recommend you go. With a spinal cord compression you need to catch it now before it is irreversible. I know we all hate to go to ER. My husband has dropped foot now because we didn’t realize compression symptoms early enough. I was told there is usually 72 hours until damage is permanent. They could give him some dillauded for instant pain relief too. You are being smart to ask questions.
i'll tell my story. i live near Spokane WA. i went thru the biopsy when my psa was 5.7-8.2 found 7 out of 12 with cancer. had a lupron shot then when it started up i went to radiation and for 2-3 years my psa was jumping follow thru with zytiga and others. when i couldn't get zytiga went with PROVENGE treatment. it wasn't to lower my psa but i got another lupron shot went from 60-38. testosterone was around the same number by then. just had a bone scan and ct. from what i could read no much has change since last year. my psa is now 30 not the greatest but not as high as your husbands and for me its been 10 years working on 11. we will die from pca down the road or medical problems with age. for me it has to be something else. the fact that the cancer has spread to 1500 and he's down to 240 something isn't great but its liveable as long as the bones aren't affected. the good news is bone they can radiated it and put a patch over it. mine are in a couple of lymph nodes.
Sorry to hear you are in such distress. Things should get easier once you are on the pathway as a cancer patient. Where in Canada are you? I am on Vancouver Island. I can't speak highly enough about the BC Cancer Agency. My oncologists work out of there. All treatments happen there. Drugs are dispensed there at no cost. The options available to oncologists there are the same as I read about in this forum. There are tremendous supports available. All the staff and volunteers are very helpful. Oncologists have called me at home to answer questions I have emailed in to them. Hopefully you will get many of your questions and concerns answered at your oncologist appointment. My initial appointments were very relaxed and the doctors seemed to have lots of time for me. Online forums like this are great too. Best of luck to you both.
It's so hard to stay strong with this going on in all our lives but it is the key to getting past each day. I truly honor and respect you for the support you show your husband. I am also loved and cared for from my wife and family. I truly know this has affected all if them. If not for them it would be a tough uphill battle. God Bless. Leo
Sorry to read your post. So young. Follow your doctor's advice --if you trust them--assess what one doc tells you against another's advice and treatment plan but also take into consideration what the men on this site have to say about their experiences. Some of the men on this site are much more knowledgeable about prostate cancer and the different treatments than many uros. Some uros have a good percentage of successes with a type of treatment and have tunnel vision about their method when it comes to other treatments. Not that those docs aren't good at what they do. If you choose the treatment they specialize in they might be the best choice.
A couple things you might try. For PSA look at Dr. Klotz speaking of a patient he had whose prostate cancer was hormone resistant and who leveled the rise for a period of time by dosing himself with hot sauce. Look at the video on YouTube and make your own judgement. It might help.
For pain try curcumin and ginger 3X a day in addition to whatever he is prescribed. Talk with your doctor about it. This may also help lower his PSA a bit or help keep it in check.
The hot sauce, curcumin and ginger should be fine but ask!
As far as the hot sauce goes, I make a vegan chili that is not bad with some help from Amy. Amy's is a brand that makes a vegan chili. I put a little olive oil in the pot, add some finely cut mushrooms, onions, peppers, both green and red and maybe a little celery. I let them cook a bit, dump the can of chili on top, add a can of dark red kidney beans, some hot salsa, spaghetti sauce with mushrooms, catsup a clove of garlic finely cut, some garlic powder and cayenne pepper until the chili is hot enough to make the sweat come from the top one's head while eating it! Eating it is an acquired skill. Accompanied by some garlic bread made with fresh garlic it is a cancer killing type of meal. Especially if some of the garlic is eaten raw. Whole Foods sells a good, organic ciabatta bread. Eat some cruciferous vegetables, broccoli sprouts are the most effective at killing prostate cancer cells according to a YouTube video by Dr. Greger--you just have to get past the taste. My salad--ugh-- five forkfuls of the sprouts, two button mushrooms sliced, some sliced onion garnished with a clove of garlic and if available some watercress. Find a dressing that helps you get it down. Fresh ground black pepper to aid absorption. I use organic ingredients almost exclusively.
Calf pain? Sciatica? Could chiropractor adjustments help? Some chiropractors use an activator which is very gentle. I stress gentle as he has bone mets. Make sure that the chiropractor is experienced with an activator and patients such as he. Better not to than to be injured by a treatment. Massage? Maybe.
I had a back injury in 2010. I had the best chiropractor appointment, or it was the only appointment I have had where everything was still in alignment when I took some yoga classes that month. Two a week? One doesn't have to be advanced just do what can be done. I don't recommend this but I on occasion bring out my gravity boots and do a bat imitation sort of while doing sit ups and so on. A Teeter Hang Up might help back pain if misalignment of the vertebrae is one of the reasons for the pain.
There are things that might happen in the near future so don't give up.
Strange about the hot sauce but look at the video. Dr. Klotz is a highly regarded expert about prostate cancer.
My suggestion would be that you consider gene testing.
I was diagnosed with PCa in 2008 at the age of 54 and with no symptoms whatsoever. Gleason score 8. I always wondered why so early and why so aggressive?
I learned from my cousin back in Norway that in fact there is a BRCA2 gene mutation running in the family. I took a test and I discovered I also had it.
The good news is that there are several PARP inhibitors that might work so it is certainly worth checking out.
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Increase in bone Mets?
chemo 'feeds' bone met tumors?!!: "Chemotherapy induces JAG1 expression in osteoblasts, promoting chemoresistance in bone metastases"
Father 67 was just diagnosed with stage 4 that has spread to bones! 
Here again I ask why doesn’t my dads urologist offer Xofigo?
