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Posted 7/12/2012 4:58 AM (GMT 0)
JK

Docs like yours really piss me off. The range of longevity in a case like yours is extremely wide at your stage of treatment. To give you a single number without walking you through the factors that affect your individual situation is highly irresponsible in my opinion.

One doc said to me "we are within a decade of taking the fangs out of this dragon"...by which he meant reducing it to a chronic disease that can be managed indefinitely. I'm sure there will be much progress along the way.

Post Edited (proscapt) : 7/12/2012 4:31:29 PM (GMT-6)

Posted 7/12/2012 7:37 AM (GMT 0)
Richard, I like your idea of dancing at Raddad's (Bud) Granddaughter's wedding.  She's a baby now, but it's such a positive thought!  That's great that you had a sweet date with your wife.  Those moments are to be treasured!  Have you shared your fears with her?  Many of us feel sharing with your wife/partner is so important!   You have a right to have a bad day, but then look to tomorrow for  positive things and new memories to create with your wife (family).

Someone posted the other day on here that there are 94 drugs coming on the market for prostate cancer.   There is such hope in this declaration.  I pray there will be help for all still battling this monster (PcA).  Please accept all the positive thoughts and prayers coming from this thread.

Much blessings,

Aimzee

Posted 7/12/2012 10:08 AM (GMT 0)
Richard,

Had a few appointments with Naomi Haas. I did not sense a wealth of compassion or expertise in that office.I do not possess your restraint. I would have asked her about her own life expectancy.
She gave you a meaningless number. Treatment for this disease is evolving much too quickly to talk about life expectancies. Embrace the day and live your life.

Jim
Posted 7/12/2012 10:24 AM (GMT 0)
Richard

You got it my brother!

In the meantime. something you have to give your primary daily attention too - the lady at your side.

Flirt with your lady!

My primary must do list developed and somewhat perfected over 38 39 years of marriage, though I'm still learning.

My list!

1. Flirting - Yes that is a good thing. It has been scientifically proven after dozens of rigid studies 8 times a day is the daily minimum requirement. However science has been unable to determine the specific times of day - though through diligent study the flirting must be spread out over the day. (ok I made up the scientifically proven part)

2. Flowers! - Yes! Frequently! When you go to the grocery store to get whatever pick up a nice assortment of flowers, bring then home and present to your lady - and flirt.

3. Tell her she has a nice a*s - Not really sure why this line works so well especially as I use it at least once a day . When I tell her, my lady still manages a blush and a "Ohhh Husband" as she struts about with a big smile on her face and a sparkle in her eyes. (see how this works into the daily minimum requirement of flirting?)

4. When you go out anyplace - Hold her hand. ( again works into the daily minimum requirement of flirting)

5. Last thing before you two go to sleep - tell her that you love her , hug and kiss her. (yup works into the daily minimum requirement of flirting)

6. First thing in the morning when you are both awake - tell her that you love her, hug and kiss her. (yes - flirting - notice a trend here?)

7. Before you leave the house for anything - Give her a kiss and a hug and tell her you love her (ayup - flirting! we are on a roll!)

8. First thing when you return to the house - think about it - Right! Give her a kiss and a hug and tell her you love her (more flirting!)

Go for it brother! Bring a smile to your wife's face and a sparkle to her eyes.

Bud

PS: Oh and the all important do or die - Toilet seat UP first. DOWN when done. Violation of this negates all the day(s) flirting.

WE WILL BEAT THIS CRAP!
Posted 7/12/2012 12:22 PM (GMT 0)
Dear Richard,

Firstly sending you and your wife a huge hug from the UK.

You’ve been dealt a pretty c****y hand for sure and this is going to be a huge emotional roller coaster for you both. Do come here and vent anytime you feel the need but NEVER give up and try and live and love every day to the full.

This May our neighbour was killed in a car accident, he was 42 leaving behind his beloved wife and 2 children – what they wouldn’t have given for another 8 or so years?

Try and stay positive, even if that means some anti-depressant medication or counselling – talk, cry and yes go smash some plates but you can and you will do this.

Susan
x
Posted 7/12/2012 1:38 PM (GMT 0)
Bud,

You sly dog you. Always working the angles.

Great advice tho. Sometimes we get too absorbed in our own issues.

Goodlife
Posted 7/12/2012 4:36 PM (GMT 0)
Bud, I'm sure Dr. Haas's estimate didn't calculate the life extension adjustment for being married / being in love / having a partner who gives you a reason to keep fighting. I'm sure that adds several years at least.

Along that note, I'd like to thank all the women who responded to my post. I've learned a lot throughout this journey so far, and seeing how my wife has dealt with it all has been very transforming. She's been very strong from the very beginning. Sometimes stronger than me.

OverThePond is correct. Many people not fortunate enough to even have a shot at eight more years (I'm thinking of a friend who died of brain cancer several months after diagnosis). And eight years is a vast amount of time. And a lot of could happen in that time period, including a cure.

OverThePond, my wife and I decided that for our fifth anniversary, we're going to do something we always wanted to do but never had the time or money, go to England. We're particularly interested in the Lake District. We call it the New England of England!
Posted 7/12/2012 4:41 PM (GMT 0)
Way to go John, that's the right way to look at things. You got to live. We get consumed in our disease at times, but in the back of our minds, we could drop dead on a dime in the next 10 seconds. While we ultimately will die, we don't know exactly when how or where, even the best doctor in the world can't predict that.

My mother is a Brit, and I lived in the UK until I was 6, so I have a lot of roots there, take that trip, and enjoy it.

david
Posted 7/12/2012 8:44 PM (GMT 0)
JK, I just read your post and others response. My wife doesn't understand why I come to this forum and was under the
misunderstanding that I would become depressed by frequenting this forum, on the contrary, I find myself finding hope here. Several years ago my life began to spiral out of control and my life was the the theme of a country music song (lost the house, the business, the dogs and separated from wife). I was homeless. I would go to the library and listen to motivational speakers on the computer because it was free. If you get a chance, listen to Roger Crawford, the doctor told his parents he wouldn't live long and he would be crippled his whole life 50 years ago. He was a pro tennis player and he beat John Macenroe at tennis. I agree with the other posters on this forum that have shared with us that medicine is rapidly changing, we need to stay positive. I need you to keep me strong on my bad days no matter if it's tomorrow or 20 years from now. Keep the Faith,
Posted 7/12/2012 9:13 PM (GMT 0)
Overthepond...Susan,

Thanks for the mention of plates....people roll their eyes when I say this, but it is seriously effective!!! lol
If we have the good fortune to meet someday, we shall smash a few....I'm buying.

Kathy
Posted 7/12/2012 10:50 PM (GMT 0)
Richard, I shared your post with my husband and he says most people do have a bad day(s), but feels loved ones can make life better.  I love the idea of going to England for your anniversary!  Obviously, your wife is an emotional support for you.  YAY!  Hugs for her!

Bud, I had Ron read your list again!  He laughed and said it's such a great message!  You can turn the list around and much of it applies to what we can do for our husbands.   :-)   The discussion of ED does come up (no pun intended).  Thank you.

Kathy, I don't know about breaking the plates.  LOL!  I do some yoga, but Ron is in too much pain right now to join me.  Meditation might work for some?  Your main message is don't hold in all that anxiety, sadness, and anger!  Yep, that's the truth!

Peace,

Aimzee

Posted 7/13/2012 12:26 AM (GMT 0)
Richard,

I have followed your posts here on HW but haven't responded because I have not had much to add from my own experiences with my PC. Your situation sucks considering your numbers and young age, but there are guys here in HW your age or younger with high crappy numbers like yours, who are surviving 10 years  now with advanced PC and will never give up the fight as long as modern science is working to find cures for guys like you. Raddad is older than you and one of my best (gooderest) GFMPH friends and I will also dance with him and now you at GiGi's wedding. The only hitch in this dancing at her wedding thing is if she doesn't get married until she is 30 something Raddad and I may be too old to do much dancing so you will have to be our stand in dancer. As our good friend Sonny closes every post here on HW with "Live every day like its a bonus"

Terry The Water Guy

P.S. Please make it to Worried Guys GFMPH gathering in September, it will change your life and outlook on having PC

Posted 7/13/2012 2:42 PM (GMT 0)
Dear Richard

in 2008 my husband was dx stage4 with bone mets they gave him 6 months ...2010 he be came hrcp April 2011 they gave him less then a year .January 2012 he was dx with dead jaw or onj and told that he would not be able to continue with bone strengtheners and his bones will be at higher risk for bone breaks that he was already at risk for.and informed that some breaks good send him down hill fast July 2012 He is at work right now it is his last day before he begins his medical leave which we choose only because we do not know how he will react to mdv3100 trial ...they have given him 9 to 12 months now ....there will always be the question of how long and some goober will give you the doomsday number but it is between you and God of when your time here is done I have learned that almost all cancer patients/spouses/family/friends and great doctors are fighters and are not the turn the other cheek kind they take it head on .. I will continue to fight every single day God gives my husband and then daysome lol
I also was thinking about pc every day and I was always researching and checking for new meds to come out but a few Months ago I decided I would wing my self off and only look for new stuff when it becomes clear currant treatment is not /stooped working and I am only allowed on here a few days a week and the rest I have commited to making everything normal well as normal as i can there are days that no matter how hard I try the reminder of pc rears its ugly head usually in the form of my husbands pain or weakness it is to be expected.. you have to change alot of things you do but u do not have to let it change you
best wishes
c.c
Posted 7/13/2012 8:12 PM (GMT 0)
C.C., thanks for sharing your journey.

The path your husband has taken could easily turn out to be mine. However, I was highly metastasized when I was diagnosed, my PSA was in the thousands, my bones were very bad and one had fractured, and no doctor even hinted that my days may be numbered. They all talked confidently about this being a chronic disease.

There's got to be some reason why they would talk like that. I considered they were just trying to make me feel better, and I struggled with that for many months.

It can be very addictive constantly goggling to follow the most recent news on PCa but I have to admit that five months ago I was very scared and confused. I was talking to hardly anyone, knew nothing else who had this, and the only advanced drug I knew about was Provenge (and it was being reported that Provenge was "only keeping people alive for 4 additional months" which seemed very grim.) Getting information about Zytiga and MDV and all the other therapies calmed me down (most of the time!).

I pray that your husband will respond positively to MDV and that he can sign a new lease on life with the landlord. Perhaps the MDV can get him by for a few more years until more protocols are worked out and approved that will benefit us all.
Posted 7/14/2012 9:13 PM (GMT 0)
John

Great post. Very honest. It really struck a chord.

I too get into these moods where it is very difficult to think long term or even medium terms, especially regarding my job and very much so regarding investments, etc.

Mel
Posted 7/15/2012 1:35 AM (GMT 0)
I have read your posts several times and didn't think I had anything to add but I do want to thank you for sharing. I think we have all had those thoughts and sometimes you do need to go for a long walk to clear your head. I remember about a week after I was diagnosed my manager came into my office talking about the stock market and all the trappings of the retirement talk. I looked at him and said I couldn't care less. My focus was on cancer. Please keep posting. From all above, you have touched us and helped us all with your post and the responses.
Posted 7/15/2012 4:01 AM (GMT 0)
Thanks guys. I do have my bad moments, but I've managed to create more and more good days. Joiining this board has helped tremendously.

I don't have as much time to be on here as I thought, but I'm hoping to get to know some of you guys better in the coming weeks.

Rob2, it's a very familiar feeling: being at work and not be able to focus. I had the dark thought: if I only have a certain amount of time to live, do I really want to be here 8 hours a day plus 2 hours a day commuting doing THIS?!! I'm sitting in a cubicle all day with no sunlight and being so sedantary and alone all day is part of what's creating the dark thoughts, having too much time rooted in one spot. I think to myself: I need a job that involves more interaction with people, less sitting in one chair all day working on the same computer, etc.

I decided that for many reasons I can't leave my job, or get another, so the way I'm dealing with things is trying to improve the quality of my life at home and on the weekend.s It's the summer time and the sun stays up till about 8:30 EST so we're trying to make the best out of those daylight hours after work. And we're doing really interesting things in Philly and New York and with friends on the weekend.

The best solution would be to get through this year and the coming winter without getting depressed, staying upbeat and optimistic, and watch my PSA stabalize, hopefully below 1.
Posted 7/16/2012 11:34 AM (GMT 0)
Way to go Richard and make sure you and your wife do make that anniversary trip to England – if you can drag yourselves away from the Lake District and make a detour to the South Coast we’ll buy the beers!
I will send you an email as my email not in my profile.
Susan
xx
Posted 7/16/2012 1:35 PM (GMT 0)
JK:

I may not be of the medical world but to me ...Nothing...I mean Nothing is ever etched in stone. Keep your attitude strong and always positive, even in the hard times. Your mind is the most powerful tool on earth. Use it to your advantage every day my friend. You have a very good understanding of yourself already. Now put that understanding into "Healing Mode".

 

Jack

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