47 year old advanced

My name is vinny I think I'm a bit younger then most of the men on here,I'm 47 with stage 4 prostate metastasis to the bone completed one round of docetaxel in October, October 4,2016 to be exact on October 5 I was informed that my psa rose back up to 5 in a months time. When I was diagnosed my psa was 74, I am currently on xtandi will find out on January 4 if I have to go back on chemo. This shit is a little scary any suggestions

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  • Hi Vinny, I'm 51 and had a PSA of 89 at the time of diagnosis. I have not had metatasis to the bone yet, but wanted you to know that you're not alone and you'll find men of all types, ages, locations and diagnoses on here. Don't be afraid to ask questions becuase undoubtedly someone on this board has had some experience. The thing you'll learn and hear so many people say, is that everyone's cancer journey is different and just because I suffered from some side effect it doesn't mean you will. But this is a great place to check your sanity. Please stop by often.

  • I understand thank you,shitty part is that from October to Nov is that it has spread more in the bones,just sucks that as I get older this stuff stays aggressive

  • So sorry that you are here. I felt young when I was diagnosed with Stage 4 when I was 58. Did they start you on Xtandi or did you try first Lupron? The reason I ask is that Xtandi is usually given after more traditional hormonal treatments have failed. In any case, we are all pulling for you!

  • I was 49 at diagnosis, with metastasis to my bones in many places. I agree, it is very scary, but lots of good info on this site and many excellent survival stories. Never give up, we're in this together!

  • Hi Vinny, I was 49 when diagnosed with stage 4 prostate cancer in the bones, bpsa was 148 and Gleason was 10 confirmed by Epstien at Johns Hopkins. And I have never had a clear scan in almost 11 years. I am 60 years old now , so just to let you know we are all here pulling for you and you are not alone.

    Dan

  • Vinny - sorry that you're here and dealing with PCa, but there's lots of promise. I was 41 when diagnosed with metastatic PCa - 45 now with no discernible disease and undetectable PSA. Been thru a lot along the way - early chemo, hormone therapy, zytiga, xtandi, surgery, provenge, but am still kicking, working, enjoying my family, etc, and that's what it's all about, right?! Let me know if you'd like to message privately or talk on the phone. Can get you my contact info. Paul

  • Thank you,that is very encouraging and means so much amazing that really makes me feel better. Again this is very scary

  • How did you do on the Provenge? Do you think it has helped? My father will start this treatment in Jan 2017.

  • Hi Vinny,

    Welcome to the club. I'm another one of the younger guys to come up with the shit. Looking at these other posts, Stage 4 is the way to go for younger men. I was 50 when Dx. It took 6 1/2 years for me to get mets, but the few I have don't bother me. I haven't had to have intervenous chemo yet, just Zytiga.

    I think having a sense of humor helps out most for me. But, the men, and women, here are your best resource for support. We all have a story to tell, each one starts the same, but from there they go off on all sorts of strange and crazy rides. You'll find here, those whose been in your shoes. Someone to walk with you.

    Peace, Joe (hope that didn't sound corny)

  • Not at all my attitude is the same that you have to have a sense of humor and also f**k this shit,not me that easily,thank you

  • Vinny - it is a scary thing to deal with and first and foremost do not get hung up on the stats. You will mentally torture yourself thinking about outcomes. Biggest piece of advice.....read, read and read. Eat healthy and continue to exercise through every bit that you can. It is as good for the mind as it is the body. Cancer is a very individual disease and what may work for some doesn't necessarily work for others. Keep in mind doctors are human and only have opinions, it does not mean you have to agree with them. By learning as much as you can, you will find one that best suits your needs. I was 46 when diagnosed with advanced disease and it hasn't been quite a year yet. I had a PSA of 286 and bulky disease in my lymph nodes. I did the 6 rounds of chemo (docetaxel) and hormone therapy (Lupron and Casodex). I just had surgery last week and the pathology report shows the chemo worked well as scar tissue on my nodes and on prostate showed extensively. There is a new trend towards surgery, even with mets because it can offer higher survival rates. My preoperative PSA was .5 and it has bounced around a little over the last year. I am just getting into this journey as well but feel like I have learned a lot if only in the last year. There are a lot of people in our corner helping to battle this disease. Some other great sites out there with tons of info too. If you would like to message me here feel free and I can give you contact information.

    Ron

  • Amazing how much I have learned in 1 year,completely understand what your saying,thank you for reaching out best of luck

  • Hello Vinny. I am 47 and was diagnosed with stage 4 disease at age 45 - extensive mets to spine, pelvis, right shoulder, and lymph node involvement. PSA reading of 5,329 which after a few rounds of Firmagon and docetaxel quickly dropped to low single digits. Completed six rounds of chemo, surgery to remove prostate and pelvic lymph nodes, and earlier this year completed provenge. Have not advanced to Zytiga or Xtandi yet. This board is a wonderful resource and I've found great support from my medical team. I've found eating healthy and exercising every day combats some of the stress of living with the disease.

  • Wow,I have been strongly advised to not do surgery of the prostate with the possibility of spreading the cells everywhere. I have this shit in my entire core of my body parts of my skull,scariest info was not if it leaves but when,that's the scary part the most

  • Hello Vinny

    Wishing you all the best for your appointment in January. My husband also had bone spread on diagnosis nearly 3 months ago and he is having hormone treatment and docetaxel chemo (we are in the UK.)

    It's very interesting to read some of your replies to see that some people are having surgery despite spread. As far as I can tell that isn't done in the UK. Wish it was. x

  • Dear Sallyyy,

    Concerning surgery if you have advanced cancer that has spread...

    I had surgery even though the cancer had spread to the pelvic lymph nodes. This was based on some recent (last five years) data that showed better survival rates past ten years with surgery. (Till you reach the ten year mark the survival rates are about the same with or without surgery.) Most surgeons still will not operate as they think the benefits are not worth the side effects and cost. In fact, many surgeons when they do operate will first take out a lymph node to two first to check for cancer. If positive they then end the operation without removing the prostate. This happened to my neighbor. In my case I had to persuade my surgeon to operate.

  • Thank you - that is very useful to know.

  • That was first thought,but since it has spread just in the skeleton and organs are clean they do not want to take the chance of spreading the dormant cells

  • Good call. Use the biggest gun you have to get the cancer.

  • Dr Who,

    Horst Zincke at mayo clinic showed years ago the benefit of removing the prostate with the nodes that it had spread to, maybe 15 years ago, I am surprised there are Doctors that would still close you up on finding a positive lymph node, I am sure he published peer reviewed papers, if I am reading this paper correctly it shows better survival when taking out prostate and lymph nodes after seeing cancer in lymph 29 years ago. ncbi.nlm.nih.gov/pubmed/366...

  • Thanks for the information. I do not know why my wife and I had to argue with the surgeon so long. What he wanted to do was first remove the lymph node in question and do a "frozen pathology " on it in the operating room. If it was cancerous he was going to just sow me up. It took some strong discussions with him to get him to agree to remove the prostate even if the lymph node was cancerous (it was, cancer totally replaced the lymph node).

  • The treatment that I am receiving is the new standard form oftreatment based on a study concluded in 2015,and I have been strongly urged not to do surgery of prostate in fear of spreading the cells.I as well am doing hormone therapy, completed my 6 rounds of docetaxel now on xtandi,we shall see what happens, thank you

  • Praying for you.

  • I have heard that they dont want to do that because they think it wont help, but not that it will make it worse. Is your understanding that they think that radiation will also spread cancer cells. [not making a joke. trying to understand what the concept is or could be.]

  • My understanding the radiation, in my case was for pain and it worked. When my father had prostate(stage 1),his prostate was the size of a grapefruit, so they did seeds and radiation to shrink prostate. I was told that since the cells have already left the area that they are already loose and surgery gives a much higher risk of spreading the cells even more

  • pondering ...

  • Praying for you too Vinny, On another school of thought they would say that the original and oldest cancer is in the prostate which may be most mutated and in danger of not responding to standard of care, I do not know who is right . I could never convince anyone to take mine out because of widespread mets

  • Hello Vinny,

    I agree IT SUCKS... where are you receiving your treatment(s)?

    Hang in there... you've come to the right place for support and information.

    j-o-h-n Thursday, 12/22/2016 1:26 PM EST

  • I'm in orange county new york and getting second opions at Mt Sinai,looks like this crap is from 9/11 jump starting and excellerating the process. I would like to think that I'm in a good area for treatment

  • To Vinnyf,

    Ever think about Memorial Sloan Kettering Cancer Center in New York City? I've met many patients from all over the U.S. and from around the world seeking treatment there. Good Luck!

    j-o-h-n Friday, 12/23/2016 2:57 PM EDT

  • Thank you I have considered Sloan, in the beginning I called for a thire opinion and they wanted tissue samples and I wasn't comfortable with that with the risk of spreading cells more then they already have. MY doctor has a colleague at Sloan,it is still an option

  • You are. my dad's insurance doesn't allow out of state but Sloan would be great for a second opinion.

  • My cheap Medicare Advantage plan didn't allow out-of-network. I upgraded my plan for 2017 ... so I can go to any provider who accepts Medicare. I already had my surgery so I consider this a crucial period for good follow up care. Best wishes for you and your father. My daughter has been there for me too.

  • Vinnyf - I live in ND but went to NY and had Dr Samadi do my prostatectomy this past Oct. (pre-op PSA 16, G 10, attachment to rectum, T3b, age 65) presently on casodex and getting first lupron injection next week (in response to PSA at 5.65) . Dr. Samadi is in NY and if you are thinking a second opinion, I highly recommend him! I can't say enough about his skills (so far for me!). Dr Samadi did a robotic approach for my RP (also can do laproscopic or conventional surgical approaches). I think you would like him, he is confident without any trace of arrogance, very skilled, very experienced. I believe he did an oncology internship at Sloan Ketterling. My surgery was done a Lennox Hill. Good luck!

    David

  • Thank you ,where us dr samadi located or how to reach him,I went to mt Sinai my second second opinion to Dr cohen, my oncologist spoke with 2 other doctors one from Sloan and another from a hospital in philly where he did his internship and so far everybody agrees with the path we are taking for now

  • Hi Vinny.

    I am very sorry to hear about your situation. Before any suggestions, I will offer a little bit of my own story, because I know that I take a lot of comfort from the mere fact of knowing so many others who have made this journey and who are on the journey with me... not just prostate cancer, but the unique and individual experience for each of us in living and dying.

    I was diagnosed at 42 with a Gleason of 8 and a PSA around 5. After going through radiation treatment (SBRT) to my prostate I watched my PSA drop and then start climbing again. It turns out that my cancer had snuck out of the prostate and metastasized before radiation. I started to feel a pain from bone metastasis and scans showed tumors in my lungs a year after radiation.

    I'm 47 now. After delay and resistance while attempting to work with various wholistic treatments and protocols, I finally began Lupron with 6 sessions of Docetaxel. It's been a crazy journey so far, with lots of ups and downs. My PSA was up to 26 at the highest, but I am very fortunate that is has remained undetectable for the past couple of years now, after chemo and with ongoing Casodex pills and Lupron injections. But I am braced for that to change at some point, sooner or later.

    You asked for any suggestions... I think the simplest suggestion I can offer from my own experience is to find your own, personal way to cultivate and practice gratitude for whatever is good in your life up to this very moment. I try to do this every day. Over time I have learned more and more about how much I have to be grateful for: from the littlest day-to-day moments, to the whole of my life. This practice has also helped me to create and invite even more moments, experiences, people, and little pleasures into my life for which I am grateful.

    I can honestly say that I am grateful for the changes that cancer has brought to me. Cancer has taught me many new lessons about how to live. My own process of transformation is still ongoing. It has been disorienting, frightening, and painful at times. I am still very scared of what the future will bring. I am also deeply curious about what all of this might mean to me. I am curious about my own fear. Curiosity helps me to create a little bit more space around my experience... to step away from it just enough not to completely identify with it. Cancer does not define me. (And yet I have learned to be perfectly comfortable in sharing my experience of cancer with others who are receptive and want to know.)

    And sometimes I just need to forget all of this shit, to get away from thinking about it however I can. Sometimes I feel the need to indulge myself and blow off my healthy discipline, because <I tell myself> I have cancer! ...so I can do whatever the eff I want. And that feels great; liberating. Also, sometimes I feel rage, sometimes deep sadness; and to allow those feelings to run their course is also liberating in its own way.

    But the best, and the most important work that I do - more than all of the other important treatments, dealing with medical decisions, diet, and supplements to care for my body and my physical health - is learning to simply be with my experience of being alive, just as I am now... more and more I learn to incorporate that willingness to be with my experience - whatever it is.

    So those are my suggestions. Learn to give yourself simple presence and awareness within your ever-changing experience. Be curious of whatever is there. I start by just tuning in and being mindful of my breath and whatever sensations I may be feeling in my physical body, maybe with eyes closed at first, but also with eyes open.

    And make a conscious, concerted, daily, personal <effort> to 'practice' gratitude. It doesn't always work; it's not always there for me; but I don't try to 'succeed'. I just try. Repetition is key.

    I wish you the best in your journey. Thank you for being here and for sharing your story too. I have found this forum to be a meaningful resource because of people's raw courage and willingness to share here.

  • Thank you that means a lot,truly does

  • Beautifully written great advice. you seem to have a natural talent flourishing in your writing. I hope you use it as often as possible . xo

  • Thank you to everybody the responses are very encouraging and inspiring thank you to everybody and best of luck to all of us.

  • Hello, Im sorry but have they suggested Provenge?

  • I'm still in the beginning of treatment, so I've done radiation,docetaxel(6cycles),casedex and currently on xtandi. I know I have a long line of treat ments ahead of me

  • Hey Vinny - sorry to hear about your diagnosis. I too am younger (54) with metastasis to bone and lymph nodes. My advice: get to a major cancer center. I've been to most of them, and the offerings they have vary greatly from what you'll find at a smaller regional hospital. Look for clinical trials. For most of us "younger" ones, chemo won't kill it - only stall it. Your best best (and the future) in my opinion is immunotherapy. If you can swing it, get to a major cancer center (MSK, MDAnderson, SCCA, DanaFarber, Mayo) and talk to the people who are doing immunotherapy. If you can start that process (like getting Provenge) you'll be moving towards actually KILLING cancer instead of stalling it (which is what the majority of the standard of care drugs do). With you in the fight. Good luck.

  • Darrylo, I know the studies discourage Provenge as useful I'm advanced stages as I was upset it wasn't the first line of treatment for my dad, 64, . what is your experience with immunotherapy as I agree the future is in that treatment combined with complementary meds. my dad's chemo isn't doing much and they won't scan again until 6 cycles are through , but after a few months, could he try immunotherapy . the doctors seem to push that therapy to the wayside when it should be a first line of treatment in my opinion. why us it not embraced so much as is chemo etc? effectiveness or bias? has it helped you

  • For me, I credit immunotherapy as the major reason I'm still alive. They gave me a year (two years ago) and all anyone talked about was chemo, chemo, chemo. I instead did a combination treatment of Provenge and Ipilimumab, tolerated it well, and it's held my cancer back substantially. Hasn't stopped it, or cured it (which it has for some), but it's given me a lot of time that I don't think I'd have otherwise. I'm currently searching for new trials that use other combination therapies.

    What I've learned since (agree with the other commenters about reading as much as you can) is that while immunotherapy in combination seems to be the future - it's incredibly difficult to find people who have experience administering - or even understanding. And doctors only suggest what they know, so sadly, the burden is more on the patient's shoulders to come up with the best course of action.

    I've found that there are a handful of pioneers who DO get it - Dr. Scher at MSK in NYC, Dr. Rosenberg at NIH in Bethesda, Dr. Subudhi at MD Anderson in Houston. There are typically trials run out of any of these locations that incorporate immunotherapy. It's much more difficult to get immunotherapy with combination though, as those trials seem rare. I've also learned that if you don't get the right person - even at these particular cancer centers, you could end up talking about nothing but chemo. So be aggressive in getting a meeting with someone who understands your desire to find out more about immunotherapy. Hope this helps. Good luck.

  • Hi Vinny!

    I read this thread with interest. You mentioned 2 things that made me think.

    1) You are pretty young to have an aggressive PC

    2) Your father also had prostate cancer.

    I always wondered why I found myself in a similar situation (however I was 54 when diagnosed with Gleason 8). I did find what I think was the answer a few years later. I discovered that I had a BRCA2 gene mutation which runs in the family. There is quite a bit of cancer running on my fathers side of the family so I decided to have a test done and found the BRCA2 mutation.

    The good news is that this might prove to an exceptional opportunity. In fact it could prove to be the Achilles heel of the cancer. There are now several PARP inhibitors in development of which Olaparib is the most advanced. I have been on Olaparib (Lynparza) since April and my PSA has been going down steadily ever since (now 1.1)!

    I think all young men with aggressive PC should check this avenue. It doesn't cost much to check and it might provide you with a very potent bullet in your arsenal of weapons.

    By the way, someone in the comments section above encouraged you to read as much as possible. I completely agree with this. The scientific advances are rapidly progressing and you need to be on the cutting edge. Your oncologist probably deals with a lot of different cancers and it is hard to keep track of it all. It is your health and your life. You need to help him/her!

    Best wishes and kind regards

    Terje

  • We checked the gene's and came back negative which in turns leads to environmental,being in construction mostly on large commercial jobs could be anything. When I went to mt Sinai to see if I qualified for the 9/11 health care program,a lot of everything that I came in contact that could have air born came up,so it looks that being down there excellerated thus crap.

  • I just want to say I honor you for working at the 9/11 site and you remain among the heroes . keep pushing to get coverage under the act.

  • Terre happy your treatment is blasting that psa down. what treatments did you do before and with what result . I want my dad to get tested but he is simply listening to doctors and doing the chemo . that's hey I'm trying to be on the front line of research . he's beyond exhausted and trying to work 6 days a week so he does not make time to research . I know various companies test but do I suggest what a genetic profile or a bracha test? I'm so happy your med is working xo

  • My husband 82- diagnose 2012- stg 4 Gleason 9 -Lymph nodes neck of bladder. Bone (extensive) in 2015. Radiation 2 areas- Lupron 2012 & continues/ xtandi (short time in 2016) & Zytiga /pred. & dexamethasone until April this yeAr. Did oxfigo 6 treatments oct-March . March PSA 58(continued to rise with all treatments) April 76 & may 112. Onco had stopped Zitiga in April & may. Slight increase in bone Mets with scan may 31. Shows no organ involvement on ct. However? Questionable nodules on left lung. We meet with oncologist on Friday to discuss treatment. What do you think of Provenge for treatment? Do you have provenge & Zitiga? Heading had testosterone level or Ar-V7 tested. No testosterone checked ever!! please try to respond

  • Hello Charlesd!

    I've had Provenge, but it is impossible to see or measure if it has had any effect since I've been doing a lot of additional tweaking over the years.

    Considering your husbands age I can only imagine he finds his treatment exhausting. You might consider an approach that focuses more on quality of life.

    I know it it controversial, but from my research I think a Testosterone treatment may well be worth considering.

    Up until two weeks ago I was on Firmagon (for 8 years in total), Zytiga (4 years) and Lynparza (1 year). I've managed to get my PSA down to 0.7

    However, all these medications (taken simultaneously) are pretty tough on the body and my quality of life has been steadily declining. I'm pretty sure the treatment (rather than the cancer) would have killed me sooner rather than later.

    So I've decided to try the BAT (Bipolar Androgen Therapy) approach. Since I'm only two weeks into it I can't give any progress report yet except that my energy is clearly coming back. I used to take a nap around 3pm, get up for dinner and back to bed around 7-8pm. So in the end I just asked myself, what's the point?

    I have now stopped taking the nap and I just feel so much better. Yesterday I vacuumed 4,000 sq.ft. I can't remember when I did that last!

    Since I have a BRCA2 gene mutation I am additionally excited about Dr. Denmaeds (Johns Hopkins) report about 1 patient in his trial who had a total remission. They checked him out further and discovered he had a BRCA2 mutation as well!

    You can read more about Dr. Denmeads approach here:

    prostatecancerinfolink.net/...

    Here is a video introduction of BAT:

    You might also find Dr. Leibowitz' Testosterone treatment interesting. He does it a little different, but I think it is well worth checking out:

    compassionateoncology.org/v...

    Please note that if your husband has bone pain this might not be suitable for him.

    Lastly, please keep in mind that I have a business background. My medical opinions are purely based upon what I have found through my 'amateurish' research!!

    Best wishes to you both!

    Kind regards

    Terje

  • Terje-appreciate the response. The advice about quality of life was a Loud bell in my head. His QOL has hit bottom since my post to you. Has to have my help to be able to get up. Using the walker full time. What could happen in 2 days to cause this change? Had iron infusion on Friday & went out to garden when we came home & did not work just looked around. Very tired when he came in. Saturday started downward rapidly. Breaks my heart to see him. Maybe we should just sto. I do not have any faith in what our oncologist is doing. Sweet man but I doubt his knowledge in up to date PROSTATE care. Maybe should try dr Denmeafe? Or we should just go for a drive & see our children.

  • Hi Vinny . I wish I could remove your burden but I can only say that though it breaks my heart that you are so young, everyone in my opinion is too young to suffer, but age is on your side when fighting. so your young age is to your advantage though I know there's only limited comfort in those words. but I have listened to the experiences of men diagnosed at your age and living fully 10 to 15 years later . Rock on my friend . it's a journey not an ending .

  • Thank you,I agree reading thsee statements have really helped with dealing with this crap and seeing how many people have been dealing with this a lot longer then o have very encouraging

  • Vinny keep us posted on your treatment and how you are handling things. WE CARE!

  • Vinny - Dr Samadi is at 485 Madison ave. The office number is 212-365-5000. Good Luck!

    David

  • Thank you

  • Vinny, how are you doing?

  • So far so good went in the beginning of January for my lupron and zumeda treatments,started xtandi on November 7,2016,Nov 30th my psa was back up to 36 from 2 in Sept, so in January was at 56. We agreed to give xtandi a full 3 month cycle, I go back Feb 1 we shall see what happens. I must say pain levels hadn't been bad seldom opiates,slight hip and lower back discomfort so fingers crossed

  • Meant to say if xtandi fails back to chemo

  • OK sounds like you are on path. Keep us posted fingers crossed on the result of your Feb 1 apt. Look forward to hearing the good news xo

  • Tuesday February 7th,I start radiation,in October this shit spread to base of skull,neck,so the crap in skull is active giving me some serious headaches,so hopefully with radiation should just leave me with some scar tissue and minimal pain fingers crossed

  • Good Luck Vinny!

    Joe

  • I'm so sorry for your pain. My dad's sacrum fractured in multiple places from the Mets and no pill helped him. Radiation for two weeks got him put of pain, and he had no burns. So I'm praying for the same with you. I believe within 3 weeks of the Starr of radiation the pain reduction was beyond significant. Good luck and let us know how it goes.never, never never give up

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