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Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 10/24/2008 12:01 PM (GMT -6)   
At this point it is simply all speculation. My doctor changed my diet taking away all beef and pork and allowing me only to eat chicken, turkey, wild caught fish, and wild game. Seeing as I am an avid hunter and fisherman the wild game and fish was not too hard to swallow however I do miss the occasional steak and hamburger. I also have been told to eat lots of fresh fruit and vegetables. I have to take a psa test today and am very nervous. If it has risen again he will take me off of the casodex. I wonder if it would be better to wait until my psa has risen to a higher level before taking me off the casodex. Even though it is rising the last one was .80 still very low. I am concerned about more hormones and thier affect on my body. I am not too sure if and when all hormones fail if I will just let the disease take me. I really do not want to go through chemo and be sick for an additional 4 and1/2 months. I am so angry. I have no life insurance and am unable to obtain any. My wife cannot aford a 1400.00 dollar house payment. I am still working as a pipefitter but fear that if my health worsens I will no longer be able to do so. This is a tough one as the only life insurance I have is a 50k policy that expires when I leave my job. I need to work until I die in order to provide for my wife when I am gone. I cannot believe that this is the way that it ends. What a joke. I have no libido and my wife feels unattractive because of it. I have no one to talk to because it is too hurtful and all anybody can do is cry. I doubt this site is for venting but I am so p@#$%^ off it is not even funny. The F.D.A. will not approve provenge because they are lying back stabbing money grabbing politicians. There is no incentive to cure cancer because all the money to be had is in treating it. I loved my doctor but he retired and I am not too sure how I feel about the new one yet. Kaiser being the "quality H.M.O." (insert sarcasm) that it is will only allow a doctor to do so much. I am sorry for all of the vile crap I am spewing but I just needed to vent. I hope you all understand. Todd
september 05 Diagnosed with sciatica as the cause of the extreme pain I was in
November 05 Chest xray for pnuemonia revealed a pulminary nodule. Advised not to worry
June 06 After urinating blood for 2 months advised to have a psa test. 3216. chest xray revealed multiple lesions in each lung. Bone scan revealed pelvic bone affected. Biopsy 3-4=7 gleason scale.
Placed on lupron and casodex. Within a year psa had fallen to under 3.0
Feb 08 psa-.09 may 08 psa-.25 july-.44 sept.-.80
Doctor advised no meat but wild game, fish, chicken, and turkey. Advised to eat lots of vegies


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/24/2008 12:52 PM (GMT -6)   
Todd, vent as long as you wish, that's part of the process and part of what this Forum is about. As long as you don't wander off into paranoia and conspiracy theories, the venting is ok. I would ask that you only post the same thing once, rather than starting a second thread with the same material, to help conserve bandwidth. Either here, or on your Afraid thread if fine for this venting post, ok?
James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-0, 6 mts.-0, 9 mts.-0.


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 10/24/2008 12:56 PM (GMT -6)   

Hey man....

One of the best uses of this site IS venting.... we all feel your pain here.  You're going to get a lot of responses to your vent, I'll just address a couple of points--

I know a guy who was going hormone refractory on treatment and got in on a clinical trial for MDV3100 (see link)

http://www.medicalnewstoday.com/articles/87762.php

...and is responding well.  Provenge may or may not be the answer --- but check this article out and see if a trial might be open for MDV3100  that you can be a part of....

As for HT, reassure your wife that its NOT her --- this stuff totally short circuits your libido -- I went thr a similar thing with my wife.

Your vent is justified --- we're all rooting/praying for you.  Hang in there, brother.....


Sterd82
Age 47 - pre-surgery PSA 39
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
PSA as of November 29, 2007 undetectable
PSA as of May 14, 2008 undetectable
Next PSA November of 2008


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 10/24/2008 7:58 PM (GMT -6)   
Hi Todd,

Venting can be good for the soul and the body. You may want to have your wife with you at your doctor visits and get the doctor to explain how the medication effects you. Might ease the tension a bit. Or just let her read some of the post here.

There is a trial (Phase III) being conducted for a new drug aberitarone (sp?) by Cougar pharmaceuticals. I am not sure you qualify but the drug seems to work for those who have had all the regular treatments including chemo but are still showing disease progression. Even if you do not qualify for the trial sometimes you can get the drug as a "compassionate" prescription. I am not sure how that works but quiz your doctor. If you google the drug name and Cougar you will see the trial and the requirements.

Todd, I hope that you can find some help and peace of mind. Best of luck to you and your family in this struggle.

Take care,
Don
Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 10/24/2008 6:11 PM (GMT -6)   
Thank you to those who have replied. I am thankful to know that I am not in this thing alone. I remember when my grandfather was diagnosed with the monster 15 years ago. I was like(its only prostate cancer and he is old. He will die of something else before it gets him) He is still with us and doing well as can be. He is living with it and I was right about him dying of something else but to say that it is just prostate cancer was very nieve. I hope to hear from more of you as it does tend to lift my spirits. I am so sad at times but in many ways my cancer is a blessing. I never really lived until I found out I was dying. People speak of extra months extra years. I want to be cured. That is not to be. I asked my doctor what is on the horizon and he replied nothing. I used to joke that I would never live to be 50. I am so stupid sometimes. I now have 4 wonderful grandbabies and I want to see them grow. I have the world to live for and for the first time in my life I am truly happy. I feel so ripped off.

september 05 Diagnosed with sciatica as the cause of the extreme pain I was in
November 05 Chest xray for pnuemonia revealed a pulminary nodule. Advised not to worry
June 06 After urinating blood for 2 months advised to have a psa test. 3216. chest xray revealed multiple lesions in each lung. Bone scan revealed pelvic bone affected. Biopsy 3-4=7 gleason scale.
Placed on lupron and casodex. Within a year psa had fallen to under 3.0
Feb 08 psa-.09 may 08 psa-.25 july-.44 sept.-.80
Doctor advised no meat but wild game, fish, chicken, and turkey. Advised to eat lots of vegies


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/24/2008 6:47 PM (GMT -6)   

Todd,

I know I don't know you, but vent and steam and get it off your chest, that is much easier to deal with then letting it stay inside.  We are each in the same war against PC, but each fight different battles on different days.  Never give up hope.  If I have to go down with PC eventually, it won't be because I didn't put up a hell of a fight first.  My thoughts and prayers are with you.

 

David

 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 10/25/2008 8:32 AM (GMT -6)   
Dear Todd,
Everyone handles their worries in different ways....It is good to be able to get out those thoughts...then they don't stay in and give you indigestion and heartburn and anxiety....My husband keeps it all in....sits and works on crossword puzzles to put it out of his mind...or watches the history channel..,..I used to press him to talk about his feelings..., but I realize his way of dealing with Pca is his way. Talk and tell your wife how you feel about her....Sometimes in the middle of the night, Pete will just say: "I love you." After all these years it means more now than ever. Even though we always had a great intimate life before Pca, I love him more now than ever....Dont try to look into the future....Luckily, no one knows the future. It could turn completely different than you worry about, and you could be on lupron for 15 years or more...(.which often happens our doctor told us)....Stay strong and forge ahead......Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Waiting for activation October 28 2008


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 10/26/2008 11:22 AM (GMT -6)   
Todd,
You are not alone.
There are many of us here that are in a similar situation.
Look at my stats, read my blog and you'll see I have gone through much if not all you are expressing, but so have others.

You have started down a good path here, reach out, express yourself, your frustrations etc.

This disease is horrible, particularly for us guys with advanced, however there are also a number of guys who have been living with this for 10+ years.
I'm only four years into my battle (almost four) but after I got over the anger, disappointment etc. I made what I believe to be the key to living with this disease; acceptance. I did not GET cancer, it was GIVEN to me. My goal now is to live the rest of my life, however long that is, trying to figure out why. To some, this is simplistic, to me, this is what allows me to go on day after day.

One thing I would add is this; you don't mention exercise in your posts? The medication and diet are only part of the battle, exercise is another area that can help you to help your body fight this monster.

Peace be with you.
Dx'd 2/18/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Current (10-13-08)
PSA: 34.47
Taxotere + Prednisone + Atrasentan
[7th Treatment on October 13]
Clinical Trial:
http://www.clinicaltrials.gov/ct2/show/NCT00134056?term=prostate+AND+atrasentan&rank=2
Lupron
Personal Blog:
prostatecancerat42.blogspot.com


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 10/26/2008 2:55 PM (GMT -6)   

HEY EVERYONE,

   I am awaiting the results of my last psa. I wont find out until tomorrow and even then I dont want to call. It sucks having blood drawn on friday and not knowing until monday. I just got back from a hunting trip. No deer. We saw 3 doe and a herd of elk. It was a good day. Lately I have been so tired. I awake at 5:30 and by 8 pm I have a hard time staying awake. I got into a fight with my sweetheart last night. I dont know why she stays married to me. I can be such an a@#hole at times. I really dont want her hanging around watching me die but she loves me and is thankful for every day. There are many things that make me feel like the monster is still asleep. I have a ravenous appetite. I mostly feel really good. I sleep most nights without having to urinate. Unless I drink coffee after 5pm that is. Thanks to 12 mg melotonin every night I sleep like a baby. I have no trouble urinating and I have only passed blood one time in a year and a half. I feel like God is watching over me but my faith falters at times. I love my wife but I push her away an aweful lot. I dont let her in because it hurts her when I talk about the monster. When I was first diagnosed a friend of mine told me about a suplement that I take a lot of.It is called pau d' arco. Other names are taheboe (spelling ?) or bark tea. I feel it has made a difference and has no drug interaction problems. It doed thin the blood a bit and I judge my dose as to whether or not I get nose bleeds. As I have stated before when firs diagnosed my psa was 3216.00 It has been under 1 for 9 months and I am 28 months into this game. They thought I would be gone in less than a year so maybe it is helping. I will post again when I get my new numbers.


september 05 Diagnosed with sciatica as the cause of the extreme pain I was in
November 05 Chest xray for pnuemonia revealed a pulminary nodule. Advised not to worry
June 06 After urinating blood for 2 months advised to have a psa test. 3216. chest xray revealed multiple lesions in each lung. Bone scan revealed pelvic bone affected. Biopsy 3-4=7 gleason scale.
Placed on lupron and casodex. Within a year psa had fallen to under 3.0
Feb 08 psa-.09 may 08 psa-.25 july-.44 sept.-.80
Doctor advised no meat but wild game, fish, chicken, and turkey. Advised to eat lots of vegies


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 10/26/2008 5:59 PM (GMT -6)   
Dear Todd, You are an amazing man! You are strong, aware of your feelings, and ...able to leap tall buildings!! ( just kidding)...but, from your posts, I can see that you are a very powerful personality...You will overcome all this. Do not weaken, and forge ahead....Your wife loves you for WHO you are not WHAT you are....Diane .
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Waiting for activation October 28 2008


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 10/27/2008 11:51 AM (GMT -6)   
Well hello everyone. As promiced here is my post. I recieved my new numbers today. P.S.A. 1.34 up from .80. I realize that this is only marginal however my last psa was 7 weeks ago and the upward swing continues. confused I dont really know how I feel at the moment. Part of me is worried and part of me realizes that this is the first treatment I have been on and that there are many more treatments out there. I have ridden this one for 29 months and I think thats pretty good but still it would be nice to ride it a little longer. Time sure flys when your having fun. yeah Well I have to go. Talk to you all soon and keep your replies coming. I like it. note the color change. Its a blue day.
september 05 Diagnosed with sciatica as the cause of the extreme pain I was in
November 05 Chest xray for pnuemonia revealed a pulminary nodule. Advised not to worry
June 06 After urinating blood for 2 months advised to have a psa test. 3216. chest xray revealed multiple lesions in each lung. Bone scan revealed pelvic bone affected. Biopsy 3-4=7 gleason scale.
Placed on lupron and casodex. Within a year psa had fallen to under 3.0
Feb 08 psa-.09 may 08 psa-.25 july-.44 sept.-.80
Doctor advised no meat but wild game, fish, chicken, and turkey. Advised to eat lots of vegies

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