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Advanced Prostate Cancer
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Hello!

Can’t say I’m glad to be here but am happy to have a forum for more information and I hope some direction. My wife initially found this but I’ve finally decided to use it myself. I am 50 yo and was diagnosed with Advanced Metastatic Prostate Cancer in August. I can already tell from looking over the posts I am much less medically aware than most of you so forgive my lack of medical speak. My story is I think different from many. My presentation and diagnosis was very atypical. Not sure if that is good or bad. My wife and dr’s seem to think bad but I am optimistic. Had been feeling crappy for around 8 months. Mainly stomach pain that turned into aches and fatigue- similar to mono or flu. Finally went to ER in August 12th when what appeared to be a bite on my ankle looked infected and started to rapidly swell. Got there and dr’s discovered bruises covering my back and upper thighs. After being questioned a bit about whether my home was safe they started a lot of blood work and CT scans. Found lymph nodes slightly swollen but throughout my body and and “irritated appearing” prostate. Then I started bleeding and did not stop. Diagnosed with disseminated intravascular coagulation (DIC), a life threatening disorder at times associated with advanced cancer, but more frequently trauma or sepsis. Three weeks, much of that in ICU, many blood and plasma transfusions later I am as discharged. I had my first dose of taxatere in ICU in between blood transfusions. About a week into my stay I had finally been diagnosed with state 4 metastatic prostate cancer. They had initially thought I had an infection or lymphoma due to diffuse lymph involvement but not anything large enough to “impress” the first oncologist. The problem for me was that the prostate cancer was in my bone marrow, which had caused the DIC. No marrow = no red blood cell production. All my lymph biopsies were positive. The bone marrow had 4 “dry taps” but I guess eventually they got a sample from the core which showed prostate cancer cell. I’ve heard 6-9 months (in August) to 6-12 months (last month). My PSA was 556 at diagnosis but down to 4.6 now. I’ve had 7 rounds of taxatere and am on Lupron. Where to go next? Anyone have or know of a case like mine? Thanks in advance. 6 young kids and want to be around as long as possible while also being realistic. - Joe

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Hi Joe I can relate to your story being 47 with stage 4 prostate cancer to lymph nodes. Your response with lowering your PSA is good and looks like your treatment plan is working. It’s a difficult time for you and your family but you’ve come onto a great forum with some really knowledgeable individuals. I was diagnosed around Feb time and have tried to learn as much as possible about the disease. You will hear some really positive stories here from people who are all in the same situation. Don’t google life expectancy it’s so different for all men and there are some stage 4 men on here who have been living with prostate cancer in the bones and lymph for 15 plus years. There are many treatments available which I’m sure some of the more knowledgeable members will discuss. You have many many years to enjoy your family and now the treatments have begun you can see the results such as decreasing PSA. You have had chemo and are now on hormone therapy to lower your PSA (this is one of the standard practices) which in turn should lower further development of the prostate cancer (I always think of it in terms of my cancer is in hibernation) and if and when you need other treatment there are many drugs available such as Zytiga etc. There are much more knowledgeable men than myself on here who helped me so much. They gave me the same timescale as you but as I’ve posted before I met a man in my oncologists who had stage 4 Gleason 9/10 who had been given an awful prognosis who was sat taking to me 16 years into treatment so I choose to ignore their timescales. Stay strong we are all here for you at anytime. 👍

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Thank you! I have met hardly anyone my age going through this and that is difficult. I have a wife and six children ages 15 down to 5. I had a CT after 6th chemo round and nodes had shrunk but were still there. Without the PET they couldn’t assess my bone marrow. I am finding my pain is increasing. I’ve always been very active and that is frustrating. I’m up to 3 scheduled doses of morphine a day and norco for breakthrough but finding it all less effective. I don’t understand why my dr sees my CT and still thinks I don’t have much longer. Thank you for your story and for having some hope. 👍

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I like that "hibernation" description. Hormones to me have not been pleasant but seem to be keeping cancer in hibernation with PSA of .001 and .03 on last 2 checks. PMA and hormone therapy are all I'm going on as knowing too much doesn't do anything positive for me and trusting the doctors is good for me.

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Hi Joe, Welcome to the group, there are plenty of us here who were dxed in our40s, I was diagnosed at 49 with stage 4, Gleason 10 and psa 148, with widespread bone disease and lymph node disease ,that was 2006, and I am 61 now, so ignore those statistics, and plan to live for a good long while. I am glad you are getting the aggressive treatment that was not the standard of care when I was diagnosed, so much is new, Including 5 new treatments in recent years, and so much new is coming in the near future. When I was diagnosed , I hoped to be able to see my Daughter Graduate High School, This spring she will complete a 7 year college program. Never give in! We are all here for you, Many very intelligent men posting the latest in research. And we will all help you through. I have never in all that time had a clean ct or bone scan.

Dan

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Another story like mine and with bone and lymph - you have blown the stats away. I can see now I was putting far too much weight on research with not enough information. Thank you for responding so quickly.

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So sorry that you are here, but you came to the right place. First and foremost, DO NOT pay any attention to life expectancy models. I have a rare form of prostate cancer (Ductal) where the data said I had only 2.5 years. While I have just crossed the two year mark, I firmly believe that I will shatter that mark by decades. There are tons of men here that have outlived their dates by decades.

A sight for good information is from the Prostate Cancer Foundation. Please look them up at

PCF.org

Another good site is the American Cancer Society. The link dealing with prostate cancer is listed below.

cancer.org/cancer/prostate-...

The next article was published in 2017 and deals with bone mets.

ascopubs.org/doi/full/10.12...

Please know you and your wife have more people than you can ever know pulling and praying for you. Neither of you will ever be alone. I firmly believe in the lines of a song, “people like us we have to stick together!”

Walt

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Thank you so much for your response and for all the sources of information. This group has me feeling better already.

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You might also ask your doctor about the bone agents Zometa (zoledronic acid) or Xgeva (denosumab), either of which is frequently prescribed over an extended period of time for advanced cancer patients with mets to bones.

On the non-medical side, if you are in the USA, at your age you might start looking closely at any options for Social Security Disability (and subsequent early Medicare health insurance shortly afterwards), or, if a qualified military veteran, perhaps Agent Orange related disability application, or medical care options through the VA. They may or may not apply.

Also, in light of your large family, this would be a good time to "refresh" all of your Estate Planning type documents, well in advance of potential need. Perhaps a Trust for your major assets controlled by you and your wife, Wills that also include important "druthers" about the future care/$ issues for your children, Beneficiary designations updates for any and all your accounts of any type, Powers of Attorney for both you and your wife, Medical Directives for both you and your wife, etc., etc. None of this is to say that you are being all negative about things, rather, that you will likely to feel more peace of mind if things like this are done sooner rather than "later".

Meanwhile, Good Luck on the Lupron + Chemo. Hope it keeps driving that PSA down to lower levels, and perhaps gets rid of some of that pain before you may need to move on to some other type of treatment, added to your Lupron.

Charles

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I forgot that one- I am on Xgeva. In fact I have a shot tomorrow- every four weeks! Unfortunately in ICU I was not expected to survive- we had not done any of the legal documents that you mentioned and so my wife ended up having to be in ICU with a lawyer doing all of it- miserable and I know it was awful for her.

I am glad you mentioned the Disability. My wife is a social worker and she has been encouraging that- but I haven’t wanted to think about it. I work for myself but can nauseating my pain level right now I do need to take a more proactive stance on this!

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You Got This Joe!!! My heart smiles at these amazing souls who give so freely of their time and of their minds and their experience and knowledge 💖

Good wishes for you and your family

Jackie

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Thank you for the encouragement!

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Joe,

All good advice above and another story for you from me. I was Dx with advanced PC in Nov 2012 given 3-5 years, with 4 bone mets. ,PSA was 72..Flash foward 5 years later to Jan 2018 and my PSA is undetectable on Zytiga for 37 months, now , Xgeva shots for the bones every 4 months. No aches, no pains. Keep the Faith, keep asking advice, seek the best team of Oncologists that you can trust, you are going to break all the Dr's Prognosis, to pieces you are well on your way with hat great PSA drop!

Dan

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Thank you!

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Wushing you the very best, Joe. There are so many kind souls on this site who have lots of information to share.

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Sorry to see you here Joe, but glad you found this group of supporters. Many of us have similar stories to yours. I was diagnosed at age 59 after feeling like I was coming down with something that never seemed to get better. That along with increasing levels of pain all over my body drove me to go into the doctor to see what was going on. I had to wear welding glasses to look at my bone scan it was so bright. That along with a PSA of 463 revealed the source of the problem.

I was really depressed until one day I woke up and realized I was getting better. After just 3 weeks on ADT, my PSA was down to 12 and the pain was gone. Now at almost one year it is 0.4. I've been through 6 cycles of Taxotere chemotherapy which I would recommend to kill off some of the cancer cells that are not hormone sensitive. Less of the bastards around to multiply and come back later.

So my life over the past 12 months has been fantastic. I appreciate everything so much more than before. I've been learning to live fully in each moment, not thinking about the future except for basic planning purposes.

I wish you the best for your treatment and welcome to the club. You are in good company here with others who are fighting this disease.

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Joe,

Very sorry to hear about your complications. I'm also 52 and recently diagnosed w/Stage4.

You already have received a lot of good advise from the members here. I'd like to add two points:

- See if it's possible for you to go to a reputable cancer center (MSK, MD Andersen, etc) if you can.

- given your age and the apparent aggressiveness of the cancer, I highly recommend you do a genetic profiling asap if you have not done so already. You may have mutations (such as BRCA or PTEN) for which there are existing drugs. (you can search for them on this forum)

DO NOT give up hope. All survival statistics are outdated, backward looking; and for a heterogeneous disease like this there's a wide range of dispersion around the "median". You'll be around far longer than you fear.

best,

shayan

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Sorry you are here, but you found a fantastic forum. My husband was diagnosed Stage IV almost 10 years ago at age 49. Wasn’t a good prognosis then, but like many here will tell you do not accept any limits or timelines. Find the right doctor that will fight with you! All my best to you are your family.

Charline

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If you can, get Abiraterone with Prednisone added ASAP, if your Oncologist thinks your liver can stand it. I was dx with PSA just under 600 and 7 major bone mets over 6 years ago, PSA yesterday was immeasurable still. I'm really happy with that as you can imagine.

there are so many gene variations though, its hard to say whats best, other than there are loads of us on here sticking around a lot longer than we expected.

Good Luck

Martin

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To: Joekaty

"I’ve heard 6-9 months (in August) to 6-12 months (last month)."

And here I am after hearing 5 years ago from my urologist that I needed a penis reduction operation still being called "tripod". Forget those numbers and live life the fullest and I would wager that you'll be dancing at your 5 year old's wedding.

j-o-h-n Thursday 01/04/2018 6:01 PM EST

(SNOW, SNOW AND MORE SNOW)

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Joe, I have sent a detailed reply as a personal message to you on 4.1.2018. If you have not been able to access it, please let me know.

Sisira

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Also Joe...Elgie was given 5 years if it left the prostate and 10 years if it did not leave the prostate. It left the prostate way back.

Diagosed in November 2003 and it's almost 14 years later.

☺Jackie

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Thank you all- since writing this have my 15 yo son with the flu hospitalized, and myself hospitalized twice for what ended up being (they say) unrelated to the cancer at all- some kind of bacterial stomach issue. Glad to be back and reading all of these replies!

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Healing get well wishes for your son and you Joe.

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