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Posted 9/4/2015 3:25 PM (GMT 0)

From 1 to 6 years
From .3 to 5,000 psa
From A to Z in treatments
From one symptom to all of them
Even today I do not see the end yet,
but having more days of feelling like it is around the corner!
Keep living with Pca

Posted 9/4/2015 3:33 PM (GMT 0)
Stay strong, Steve. Wishing you the very best as you throw the kitchen sink at it!
Posted 9/4/2015 3:34 PM (GMT 0)
Live life. As Sonny says, "Every day is a bonus."

Peace,
Andrew
Posted 9/4/2015 5:44 PM (GMT 0)
Sorry Steve. Keep fighting. There is always hope that some new treatment will turn things around
Posted 9/4/2015 5:55 PM (GMT 0)
I'm thinking that cannot be easy to post, Steve - really the hard edge of reality of PCA. If you've the time and energy I would like to hear what things you most value just now and what you want to have in each day? Imagining your circumstances I'm feeling there are things I could learn from you.

Best -
Wildeness
Posted 9/4/2015 7:58 PM (GMT 0)
Last month I had to give up being president of a club I had been president for over 25 years.  Last week was my last day at work.  Yesterday I rode my harley to the club and it was a mistake I was so weak I could not ride it home. Today I could not join my wife to take our grand daughter to the zoo.   I fought long and hard.  I was brave and had faith.  I am having a reality check.  For all of you guys do it today because when you can not it is some of the saddest moments of your life. I have hope and maybe tomorrow will be a better day. 

To Wilderness today I am focus on not letting go of good family and friends communications via email/ texting/ phone.  Do not ask others to do something I can still do for my self like-- get me something or remind me of something such as take my meds.  I still need to have control over somethings and still need to know I can make decisions. A biggie is to not make it all about me, think about others.  Living with Pca -Steve

Posted 9/4/2015 8:05 PM (GMT 0)
This hurts my heart to read. I hope that you continue to fight, and receive that "miracle" we are all hoping to find. Please stay strong, keep fighting, and mentally don't give up. All of us here are supporting you as you continue the fight.
Posted 9/5/2015 1:28 AM (GMT 0)
Steve, I'm sorry you've had to give up things that are so important to you - such a difficult place to be in. And yes, I fully realize that is an understatement. All I can offer is my hope for you to have a peaceful heart and that better day - you certainly deserve that and more.
Thinking of you and Carol,
Susan


2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
6/19/15 Stop Jevtana PSA 63.40 CT shows left kidney hydrophenosis caused by tumor pressing on ureter and increased liver lesions
6/19/15 Start Taxotare and carboplatin
6/26/15 Nephrostomy
7/10/15 PSA drops to 9.63 after first cycle of Taxotare and carboplatin
7/31/15 PSA now 2.6 after 3rd cycle
8/21/15 4th cycle PSA 2.4
CT scan Sept 8 to check liver
Posted 9/5/2015 2:13 AM (GMT 0)
So flipping sad. Every day you can hang in there, is a day closer to that "miracle cure." So hang in there for all you are worth. Don and I are sending our very best to you and Carol in this crazy odyssey.
Posted 9/5/2015 2:53 AM (GMT 0)
Steve, sending energy and prayers your way. You're doing us a service by writing about your situation, so we serve and try to help lift you up in some way. Thank you. Jim
Posted 9/5/2015 3:11 AM (GMT 0)
Thanks for that Steve. I won't forget -

Wilderness
Posted 9/5/2015 6:01 AM (GMT 0)
Steve and Carol,
I was so wanting to see a post from you, as I have been thinking about you both. I am so saddened to hear about Steve losing the ability to work and ride. Is the nausea better? Pain? Carol, are you able to take some time off work?
Keeping you both in my prayers.
Beth
Posted 9/5/2015 1:14 PM (GMT 0)
Hi Friends  It has been a long month.  We were told we could start a clinical trial, than the kidneys started acting up.  We were told we could enter another clinical trial and his bilirubin went from 2 to 9 and disqualified him.  They opened another group for men with higher bilirubin today 12 and Steve got in.  Same day friday he had to have a scan to start on Monday and we have to have a whole week and the next week was holiday and they were afraid to wait two weeks because of bilirubin going up so fast, but insurance would not authorize it.  I said do it and I would fight with insurance.  We started the clinical trial Monday and Steve has been so weak, his feet and ankles are swollen he can not walk ten steps and  has to sit down. He is so yellow he looks tanned.  He hardly eats but weight has been stable for two weeks, I think it is fluid weight making up for body weight.  Then the scan showed three new lung nodules suspicious for cancer.  Now Steve is fighting cancer in his prostate/ bones/ liver and lung.  I did take the week off for the clinical trial as we had to be there every day.  I am not sure if I am going back to work or if Steve needs me to be home every day.  He loses his insurance in 12 weeks and I can pick him up if I stay working full time.  He can file for social security disability but who know how long that will take become effective. Cancer effects so many different aspects of our lives no wonder our minds are on overload.  Thanks for kind words and encourragement--Carol
Posted 9/5/2015 1:32 PM (GMT 0)
Hi Friends jpenn44 Psa is 5620  Wow bones and lung mets  wow  how scary.  How r u feeling any pain.  Do u have a great support group?

Hi susan  I hate waiting for scans and even more the results, but can not ---not find out too.  I sure hope it is alot less cancer.

Hi Beth  Yes the neasua is better, he has to take two Zofran and two steroids every day but he is sick about two days out of the last five.   He has only had bad pain once in the last month from the bones.  When is hubby next scan? does the higher PSA mean chemo is not working?  Steve says the side effects are real bad hope you guys are ok.

Steve is just now getting up so I am going to see how he feels.  Hope everyone has a good day.  Carol

Posted 9/5/2015 3:10 PM (GMT 0)
Hi Carol,
Very sorry to hear about Steve. If he has stopped working, please start applying for Social Security disability NOW! one of the primary determinations is if the person applying is currently working. Next, start collecting Steves medical records. This includes doctors notes, imaging, anything that may privide the medical evidence necessary to help Steve qualify. Also, make sure the docs zre fully aware of the things that Steve can no longer do, and the pain that he is suffering. Document everything and let the docs know everything.If Steve has multiple met sites he is likely to qualify for a compassionate allowance and an expedited determination.
Posted 9/5/2015 5:29 PM (GMT 0)
Hi Carol.... No pain really. A twinge of discomfort but nothing major. I'm anxious for my next PSA test in three weeks. I'm hopin for double digit PSA. I have an amazing support group with many friends and a lot of immediate family close by.

Again my thoughts and prayers are with you and Steve. Such an amazing and brave couple. Keep your chins up and just enjoy each other.
Posted 9/5/2015 8:57 PM (GMT 0)
Almost 10-- thanks for the tips.  I am not sure if Steve should apply for disability now because we have 12 weeks of work disability that has full insurance too.  If we got the SSD we loose the work disability, then he gets Medicare which is only 80 % payment and we have to buy insurance for the other 20 %.  I Have all the medical records and hospital portals with access to all records. His doctors thought he should stop working months ago so they are all in support of disability. I have not heard of compassionate allowance so I need to check into that.  I will talk to SS office as soon as I get a day off as I am still working too. I am on FML but only get 12 weeks and I want to save them for when he needs me. Thanks again.
Posted 9/5/2015 9:54 PM (GMT 0)
Yes, the work disability is much more valuable right now. Good to hear that you are prepared. Best wishes to the both of you.
Posted 9/6/2015 4:17 AM (GMT 0)
Hi Carol,
I think that 12 weeks does not have to be taken consecutively or even a full day. I sure hope the trial has a positive turn around and fast! What trial did you get in. Is Steve's cancer neuroendocrine?
Gary just got a biopsy done yesterday to see if his has mutated to neuroendocrine. His CT showed liver mets all over, but his blood work was good and his PSA had dropped to 924 when he went in for chemo Thurs.! The silver lining and grasping at straws, yes?
Carol, take a moment this weekend to have a glass of wine or tea or just decompress. You have a lot to deal with and working full time too. My heart aches for you.
Posted 9/6/2015 3:18 PM (GMT 0)
Hi Friends

Beth the clinical trial is Alisertib.  We never got the biopsy because of Steves high labs liver bilibrubin 12.0 Ast 194 Alt 148 alk Phos 386 ldh 1472 GGTP 856 had to look that one up and kidney values they would not put him through it.  The reason the oncologist from U of M wanted it was because he was positive it was small cell carcinoma so neuroendocrine falls in to the category.  The oncologist said only about 2% of guys with prostate cancer get this.  How did our guys get the short stick??  You are right about me not having to take FML all at one time, I am on Intermittent leave and just took a week off for U of M appointments.  I am so please Gary's PSA went down and because this is the second time on Docetaxel that is impressive. Grab at the straw and hang on tight you have hope as the blood work is good than the liver is still functioning. Carol

 

Posted 9/7/2015 6:15 AM (GMT 0)
Thank you Carol. I am so shocked at how quickly Steve's cancer spread throughout his liver and into his lungs. I sure hope and pray the Alisertib is the next wonder drug and it starts working on those blasted mets!
Beth
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