Members who have stage 4b PC and age range 45 - 55.

Hello All,

My man was diagnosed in August 2018 with stage 4b PC. His age is 51. We are looking for members with the same diagnosis and within the age range of 45-55 years old. We would like to compare meds and side effects.

Many thanks!

[YostConner]

I’m 55. Was diagnosed at 43. Bone mets first visible at age 47.

[Hidden in reply to YostConner]

Hello Yost, what is your current treatment? Also, Have you suffered from pain? From what I have read, fatigue is part of side effects of treatment.

[YostConner in reply to Hidden]

My current therapy is Xtandi. It causes me fatigue, weakness and soreness plus several more minor side effects. As for the bone mets, yes, I have pain in my spine and rib cage, and I am susceptible to ribs cracking. I use fentanyl patches and oxycodone for pain.

[Hidden in reply to YostConner]

Dam, you impress me always..

[Hidden in reply to Hidden]

You are still young now.. But 43? Whoa that sucked man. Won’t hear me bitch about being the youngest guy to the party anymore. Sorry about that.. your strong spirit shines through .. Take care.. Scott

[joancarles]

Hi, I'm 52 years old. Diagnosed at 51. My PSA was 1350. I have been in Zytiga for 13 months, we managed to lower PSA to 0.17, currently 0.26. I have very controllable side effects. Hot flashes, less and less. Fatigue, with exercise I have it under control. Nothing else. Mucga luck and trust in medicine

[IgnatiusN in reply to joancarles]

I like this post

[pakb]

My husband was 49 when diagnosed last August (2017). PSA was 677 GL 9 Mets to spine and lymph nodes. His PSA may have been higher but his urologist (who we do not see anymore) never did a PSA even though my husband had been through almost two years of prostate issues. Discovered pca after TURP for urinary issues (routine biopsy by hospital that they do on any removed tissue). But urologist immediately put my husband on bicalutimide- 3x the current recommended dose. Without doing PSA... so by the time oncologist did PSA he had been on bicalutimide (3x regular dose) for two weeks. PSA may have been higher before that.

I have details of treatments (but I do need to update) in our profile but he did lupron right away plus Docetaxel. Been doing zytiga + Prednisone since spring. Still doing lupron.

He's also a vegan, lots if phytonutrients, D3, some other supplements that have tumeric, black pepper, and other things I've followed on this site. He is active and still working. Some fatigue, hot flashes, and emotion from hormones but not too bad.

He keeps a very positive attitude and takes each day at a time and as a blessing. We go before the end of the tear for more scans to see how things are.

[Hidden in reply to pakb]

Thanks for the information. How are you doing/coping with the diagnosis and side effects of treatment?

[pakb in reply to Hidden]

My husband has a phenomenal attitude. One day at a time and counting the blessings he does have. He uses a fan a lot at night and works out to fight fatigue. I do almost all of the research and such so ge can focus more on himself. He does tend to need a little more sleep. He gets up a little later than he did before. We have three teenagers so we keep busy which can be good some days!

[Hidden in reply to pakb]

Overall he’s handling it well. After all , he has you by his side.. lucky man..My wife doesn’t go on HealthUnlocked but she ‘ s my reason to live and endure what I must.. I too have some stories about my urologist that would be funny if not true.. fresh organic turmeric I like.

[Hidden in reply to pakb]

Appreciating and finding daily happiness is a blessing. He has that .Good luck on upcoming scans

[Hirsch in reply to pakb]

Sorry for you. I guess the original urologist missed that daily lesson in med school.

[poofers]

I was diagnosed at age 55 now almost 60 with stage 4, PSA 209 with bone mets to low spine and left hip. I have been on 1st line hormone therapy for 4 years now and still maintaining undetectable PSA. Side effects were miserable the first year with fatigue and sweats but now I rarely have a heat flash and very little fatigue. Your husband is not going anywhere any time soon so don't worry about it. Support him and help him maintain a positive outlook and he will be by your side for a long, long, time.

[GeorgeGlass in reply to poofers]

how bad was the met pain? Do you still have pain now whith the PSA near zero?

[easeytiger]

I was diagnosed age 43 (just under your age spec) in December 2017. I had extensive Mets to pelvis, spine, ribs, sternum, shoulders. PSA at diagnosis 55, topped out at 68. I had Firmagon from day one, and started Zytiga/Prednisolone in January. PSA at lowest point in September was 15.4. I managed to get an appointment to see Professor Johan de Bono at The Royal Marsden and started an immunotherapy trial in October called ICECAP. I have fatigue but try to go to the gym and also swim. I cycle in warmer months. I also work four days a week. Hot flashes come and go but are bearable. I've lost around 8kg in weight this year, but still have a good appetite (no red meat or chicken, no dairy).

[pakb in reply to easeytiger]

Will be interested to hear how the immunotherapy goes for you. Fingers crossed for you!

[Fox2018 in reply to easeytiger]

Hello Easeytiger - I understand no red meat, but why no chicken?

[easeytiger in reply to Fox2018]

Not Something related to pc, more to do with my diet choices.

[pcmyway in reply to easeytiger]

No chicken is a good thing (confirmed by trials) It’s worse than beef not only for PCa but overall health period.

[j-o-h-n in reply to Fox2018]

to quote Chico Marx in the movie The Coconuts "VIADUCT? WHYNOCHICKEN?"

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/06/2018 5:48 PM EST

[Hidden in reply to easeytiger]

Thanks for the info. Are you taking zometa or xgeva for your bones? My guy is taking zometa. Recently he has had alot of pain in his bones? Do you have bone pain?

[easeytiger in reply to Hidden]

I get a monthly shot of denosumab. Bone pain seems to come and go, it's bearable, much better than at diagnosis.

[Hidden in reply to easeytiger]

On a scale of 0-10 ( 0 = no pain, 10 very, very painful), what is your "bearable" pain level? Also, do you think your pain level has decreased due to the monthly shot of denosumab?

[easeytiger in reply to Hidden]

I have low level aches mostly (1), with sporadic shots of pain around the body (5-6), nothing seems to be constant or in one area. I don't take any pain meds at the moment but it's hard to say whether denosumab has any affect on this.

[Hidden in reply to easeytiger]

Keep rolling 🐯

[Hidden]

Friday the thirteenth 3-15 I was 53 now 57. I was diagnosed #4, Gleason 4+4 , T4 high grade disease based on enlarged lymph nodes and invasion into the bladder. Resulting in renal failure helped by bi-lateral nephrostomy tubes and foley for 1 and 1/2 yrs. Started test adt drug now unavailable.After first firmagon shot PSA down from 18 to .04,, switched to Lupron until 9-16 orchiectomy and no more shots so far. Very lucky indeed. Suffered much urologically and emotionally. I’ve had no visable signs for over 3yrs now.. So I came from a bad state to a much improved condition He can too. I’m quoting somebody else’s dr. That said “ There has never been a better time to have prostate cancer. So many new drugs coming out. mucha suerte con tu’ hombre.!

[Hidden in reply to Hidden]

Oh yah, sorry I forgot the 8 weeks of radiation therapy. Fatigue , muscle and bone pain and loss , mood swings, night sweats, have them all and more..Adjusting with Time , to a new life. Some guys glide through with minimal side effects , not me , it boils down to no “T “ for almost four years. I’m one guy that does not function well with zero testosterone. Strength stamina and cognition all zapped .No cake walk financially either. That said , no visable signs. Got my tri monthly blood test today. The Doc asked “How are you”? I replied “” How can I complain ? I’m in a cancer ward with no visable signs .. luck of the Irish or dumb luck , but really it’s my wife’s love pulling me ..Take care , love each other. Together he has your strength. You will find the right path. Scott

[Shooter1 in reply to Hidden]

Scott, No T as of orchiectomy . Getting stronger every day now that I cut Xtandi to 100 mg/day. Glad to hear you are doing well. Jenny also won't get on site.

P.S. Finally retired, VA picking up all drugs at $8 co- pay.

[Hidden in reply to Shooter1]

Congrats on retiring..

[pmvc]

Hi I was 54 when got diagnosed with stage 4 and Gleason score of 8. Now it has been 2 yrs and with initial treatment of chemo ( 10 cycles) combined with hormone treatment brought down my psa from 24 to 0.08 . PET scan results last 4 month back indicating healed lesions and reduced tumour size. As on day I M very healthy with small side effects like hot flashes and fatigue. But every day brisk walking for 45 minutes giving me good stamina to sustain for full day. I am still actively working as sales manager. Taking bicultamide 1 tan and shellcol 1 tan along with metaformin. Once in 3 months lupron injection along with zolondric acid injection. Keep faith in God and your doctor. Things will turn out positive.

[Magnus1964]

I was diagnosed at age 47 stag 4, gleason 9. I am now 73 and doing ok. Don't panic. Being diagnosed at an early age is terrible but there is a lot of treatments out there that weren't there 26 years ago.

[Hidden in reply to Magnus1964]

Amazing!

[EdBar]

I was diagnosed at age 55, Gleason 9, mets to spine, pelvis, ribs, sternum and several nodes. I'll be turning 60 very soon. I took an aggressive approach to my aggressive cancer, you can check my profile. SE's from 5 years of ADT can be pretty rough but PSA remains undetectable and no sign of active mets. I realize my current treatment will fail sooner or later but in the mean time I just keep kicking the can down the road.

Ed

[Hidden in reply to EdBar]

Iam kicking that same can buddy.

[Dan59]

I was dxed stage 4 ,gleason 10, bpsa 148, with widespead metastatic disease in 2006, I was 49, I am 62 now and hangin on still

[cfrees1 in reply to Dan59]

That's actually pretty amazing Dan. What treatments worked best for you? I was fairly similar to you, PSA 89, Gleason 9, Stage IVa. I have been trying to wrap my arms around my expected survival time. I have had surgery, and radiation, then Lupron failed after 1 year, added Casodex and that failed after 1 year, so I'm now on apalutamide. I don't like how quickly I'm burning through treatments, but have been feeling good and continue to work. Was diagnosed 3 years ago at age 50. I am not expecting 12 years so to hear that you have made it that long is great.

[Dan59 in reply to cfrees1]

I would have to say that hormonal therapy combined with xtandi worked best for me, as it gave me 2.5+ years. There was so many different therapies back then, and you have so many new therapies now,Currently I am sitting in the Oncology house of drips getting my weekly blood transfusion for late stage prostate Cancer, pain free, weakened , but happy to be alive. I wish you the best

[cfrees1 in reply to Dan59]

Best of luck to you Dan!

[GeorgeGlass in reply to Dan59]

2.5 years with Xtandi and Lupron but what about the other 9 years? What did you use for treatments to slow gleason 10? Are you serious? I didn't know blood transfusions were allowed. Where can someone get those?

[Hidden in reply to Dan59]

Wow

[cfrees1]

I was Stage IVa at 50...

[Sherpa111]

Hi! I was diagnosed at age 52 stage 4 with Mets to Lymph. I had a dry non productive cough for two months prior to diagnosis due to the enlargement of my lymph nodes from my neck to my groin. And all on the left side for some reason. My PSA was 146 prior to treatment. I am on the 6 month Lupron prep injection and Zytiga with prednisone. I took Casodex for a short time to prevent flare. I’ve been in treatment for two months now and have the usual side effects which I manage through diet (plant based primarily), exercise with weights and prayer. You can read meditation into prayer if it is not your thing. I take life one day at a time and I spend as much time with my two very young daughters, ages 4 and 1 1/2. They are my world! This site has helped me tremendously. I’m typing this on my phone and I forgot what the original question was, but suffice to say this to shall pass. I’ve responded well to treatment. My PSA dropped to 73 in two months and my lymph’s are decreased in size. The cough is also gone. Peace.

[Hidden in reply to Sherpa111]

Enjoy those girls.. peace.

[MarcoGlenn]

Diagnosed @ 47 PSA 1,882., cancer in most all my bones and lymph system. Actually that is how I was diagnosed (a lymph nod in my neck). My PSA has been as low as .06 however it has gone back up to .18. I am on Bicalutamide 50 mg 1 per day, I did chemo, Provenge, I get a hormone (Lupron) every 6 months. Xgeva (every time I see doc either every month or every 3 months). If my PSA keeps going up at my Dec visit. It will probably be time to do something different. Good lick to you.

[Hidden in reply to MarcoGlenn]

Thanks for your info. Do you suffer from bone pain? Also, do you have fatigue?

[MarcoGlenn in reply to Hidden]

Bone pain is minimal- but I do have fatigue. I have always been active so I fight through the fatigue. I still do my yard work and my Grandkids do not know I am sick. I try to do as much as I can, however I do spend a lot more time in my chair.

[Hidden in reply to MarcoGlenn]

My guy is on lupron, zytiga, prednisone, and monthly iv infusion of zometa. He is having alot of bone pain and suffers from fatigue. From what I understand, fatigue is part of the SE. Any idea on how to overcome the bone pain?

[GeorgeGlass in reply to MarcoGlenn]

what was your bone pain like when your PSA was at 1882?

[MarcoGlenn in reply to GeorgeGlass]

I did not have any. I really have not had any. I did not even know I had cancer till the biopsy and then the psa test.

[GeorgeGlass in reply to MarcoGlenn]

That's surprising and fortunate. Good fortune going forward.

[MarcoGlenn in reply to GeorgeGlass]

Thank you I consider myself very lucky. Fighting everyday - good luck to you.

[mintlatte]

So - my husband was diagnosed at 45 - stage 4 widespread throughout lymph system. His PSA was 6,800. We do not have a Gleason score because his original PET scan was diagnosed as Lymphoma, so a lymph node biopsy was done rather than a prostate biopsy. When the biopsy came back positive for prostate cancer, it was decided that other testing was unnecessary because it would not change the treatment options. We did an initial course of biclutamide, started Chemo and then Lupron. He did 12 sessions of Taxotere and his PSA is now under 1. Oncologist says he will basically be on lupron or other ADT for the rest of his life.

Through it all he worked full time, he works retail so that is no small thing, his attitude is good and although it is hard to go through so many changes in a year - he has a pretty positive outlook most of the time. Not to say this is all sunshine- you guys all know how dark this damn disease can get - especially when adjusting to different hormones, treatments, and the mental load of dealing with a cancer diagnosis. So we take it day by day...do our best to be honest with but not scare the kids (one teenager, one in college) and try really hard to see the humor in life.

Worst side effects so far: The ADT caused Hot flashes. Either the cancer or the chemo caused Lymphedema in one leg. Most everything else was chemo related and he is just starting to heal from that. He doesn't like the emotional side effects - but from my standpoint - it is still my husband - he still swears at traffic and drives me nuts, but kids and puppies tug his heartstrings harder than they used to

[j-o-h-n]

"he still swears at traffic and drives me nuts, but kids and puppies tug his heartstrings harder than they used to :-)"

My kind of guy! Keep him, don't trade him in.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/06/2018 5:53 PM EST

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

I agree

[MarkBC]

I was diagnosed July 2018 at 55 years. PSA 103, Gleason 9, mets to lymph nodes, pelvis, spine, and ribs. On ADT (Degarelix then switched to Zoladex). Just finishing up 6 rounds of chemo - Docetaxel. Full body scan is scheduled for Dec 31. I will have 8 weeks of external beam radiation in January. PSA is now down to 0.37. So far, so good. I have most of the common side effects from ADT and chemo. Lots of fatigue. I am off work on sick leave and considering retirement with a reduced pension now.

[Triplets3]

I was dx in 2014 at 47yo. PSA 21. Gleason 8. Slight lymph node invasion. Am now 52. Did 2 years of Lupron after prostecemy which brought down PSA to undetectable. 2years later PSA back to 23. Currently on a trail study of Zytiga, Degarelix, prednisone daily w/ a shot of fermion once a month. PSA currently at <.01. Crossing fingers it stays that way. 4 more months to go til the study ends. Only noticeable side affects are the hot flashes. Very little noticeable fatigue (even though I can fall asleep about anytime) I'm think I'm very active but wish my diet would be better even though I'm in fairly good shape.

[dvcarola]

Hi Mihombre, my husband recently turned 44 in June this year and a few days after his bday he was diagnosed with stage 4B PCa gleason 9 with mets to several lymph nodes, pelvis bone, spine, ribs. Now on Zytiga, Xgeva and Eligard and I believe he is doing well. Initial PSA was 33, last month’s PSA is 1.44. Minimal side effects were hot flushes, fatigue, brain fog and lately as you know he started to feel some bone pains but now not so much anymore as I apply some essential oil blend every morning before he goes to work and evening time before he goes to sleep.

Staying positive, lots of prayers and plenty of exercise has helped my husband remain strong as he still continues to work. So, please hang in there.

[paulofaus]

I was Dx age 49, now 51. Burned through most standard treatments. Currently on Cabazitaxel. Recently I've progressed to lung mets, which I'm not too thrilled about, but I keep fighting. I hope to do Lutetium177 soon. Cheers Paul in Perth.

[Blair77]

My husbands 49 diagnosed at stage 4 when he was 47.