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High PSA- 128, enlarged Prostate, GS 9, Aggressive Advance Prostate Cancer! PSA 12-27-13

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Posted 4/14/2013 7:33 PM (GMT 0)
I've been reading on this forum for a few months now and really enjoy it. Decided to put my story on here today. Sorry, but have to quit but will finish it later. We have one daughter (born 5-17-1977, son-in-law and four grandkids from 6years to 15 years. We have a great family and host of family and friends that's praying for us.

July 2012, I went to GP for a check-up for my diabetes and cholesterol. She told me that both were high and I needed to take off some weight and start eating better. I was to see her again on Monday, Sept., 10. By Sept. 10, I had lost about 15 pounds and was able to cut my metformin in half (from 1,000 MG in am and pm to 500 MG). She was very happy with my results and told me to keep up the good work. Right as I was leaving the exam room, she asks me if I wanted a PSA test, I said, “WHAT IS THAT” (I had been seeing this DR since 1-1-2009;)? She explained it to me, I said, YES (having never heard of the term before, or ask by any of my doctors, I’m 61 and will be 62 Oct. 28, 2012).

Needless to say, the next day around 1PM, the nurse called me and informed me that my PSA was at 126 and that the normal was around 0-4 for my age. She had already made me an appointment to see an urologist the next day (Sept. 12, 2012). While at the urologist’s office, they took a urine sample and blood sample. He performed a (DRE) test and told me my prostate was enlarged four times the normal size. He ordered a Biopsy test for Sept. 19, 2012.

The next afternoon, Thursday, Sept.13, urologist’s DR. called me at home and said my PSA was now up to 128 (in the meantime, my wife and I had been on the internet learning all we could about prostate). I ask my doctor if he thought I had prostate cancer, he said yes. I was scheduled for a return visit Wed., Oct. 3, 2012 for a follow-up report of my biopsy. Monday (Oct. 1, 2012) morning around 9AM, my urologist’s called me at home and gave me the bad news of my biopsy (all of the 12 cores with high volume and very advance; GS-9, 11 cores between 15%-100% cancer-6 were 100%). He told me that his nurse was trying to schedule me TODAY to go have a full body bone scan and a CT. I went for those two tests the next day (Oct. 2nd). Back to Monday morning (10-1-2012), This morning, he was to call in a prescription to start taking Bicalutamide 50 gm, daily (Casodex) ASAP. Monday (Oct. 1, I picked up the med and started taking Casodex that afternoon and have been each and every day since.<span style="mso-spacerun: yes;"> Oct. 3 appointment with my urologist’s, told me the bad news of the bone scan showing evidence of metastases from my right skull down to my toes (hadn’t gotten the CT
report yet, this was 3:30PM). Told me I had 4-5 years at the most to live. WOW…WOW. I didn’t want my wife to come to this visit as I had a feeling with so much lower back and right hip pain for several weeks, it wasn’t going to be good.

His nurse gave me a double injection of Firmagon (Degarelix) and was to get a single injection every 28 days starting Nov. 2, along with a shot of Xgeva. He also had me to start taking 800-1000 IU/day of Vitamin D and 1200 MG of Calcium. Continue eating healthy and exercise. Backing up to the first week of September, I started having pain in my lower back, neck, right butt, hip and leg. I just thought it was related to my lower back and upper neck problems (2004 had lower back surgery and 2008 had upper neck surgery. I wasn’t sleeping well and the pain was increasing every day (now I think I know why: prostate cancer)!! The past few weeks, when I’ve been lying down in bed, I attempt to get up and my lower back and hip hurt so badly, it takes me a few minutes to sit upright and get out of bed. As of last month, my PSA has dropped to 0.2. Sorry but I have to go. Will finish this tomorrow.

Dave in Bartlett, TN
Posted 4/14/2013 10:13 PM (GMT 0)
Hello Dave,

Welcome to the forum. Sorry you have to be here but you've found a good place. We have lots of guys here whose story starts the same way your story does and a lot of them have been doing well for a long time. They might surprise you doctor (and so might you.)

We will wait patiently for the next installment of your story but I expect that in the meanwhile some of the other guys who were diagnosed with high PSAa and high Gleason scores, and mets will want to say hello.
Posted 4/14/2013 10:42 PM (GMT 0)

Hi Dave

Very sorry to hear that you didn't discover the problem much earlier.  Don't despair.  Your Uro appears to have started a great beginning, but you also need to be under the guidance of an Oncologist that specialized in PC.  A Uro that is already predicting the length of life would cause me to not have a great amount of confidence with his future treatments.  Keep us posted.

Posted 4/14/2013 11:58 PM (GMT 0)
Welcome Dave, sorry you have to join the club! I’m fairly new here as well, but I found this to be one of the most informative places to visit, when I was searching for answers. I can’t speak as a medical professional, just from my personal and limited experience as a G9.

As you can see from my signature, I caught the beast way too late as well, but know enough from my studies that any doc that throws out a life expectancy number is not following all of the advances that are being made against this disease. More and more therapies are being approved by the FDA each year for the fight against PCa, do not accept the number given, and prove your doc wrong!

I will say however that it sounds like the care you’ve gotten to date appears to have been delivered in a very expedient manner, and represents some of the most common first line treatments for this stage of PCa. In my opinion, Firmagon / Casodex are good first choices to get things under control; I started out on Lupron, prescribed by my 1st Uro, but was later told by a second opinion Medical Onco specialist that she would have started me out on Firmagon instead. I was vitamin D deficient as well, and am taking supplements for that. I don’t think my bone mets is as severe as you describe, but it is in my hips, spine, ribs, pelvic.

I had severe hip pain before I started on the Lupron, and was very close to having radiation on my hip for the pain (decided to put it off until I had my 2nd opinion). By the time I got to my 2nd opinion radiation Onco visit, my hip pain was totally gone, which was about 2 wks after my 1st Lupron shot. I did not expect this positive response to the Lupron, and don’t know how normal that is, but I do hope you will experience the same for your pain. By no means am I suggesting to not having radiation treatment to help relieve the bone pain, as I understand this is quite common.

Symptomatically I’m feeling great just a month into HT treatment (other than the hot flashes), but I do know that my current HT treatment is temporary in nature. I’m anxious to get my next PSA number, but won’t see that until the end of April and hope it is as great as yours! This is a great time to learn what you’re up against and plan your attach against the beast, through your own research and/or hopefully the guidance of a prostate cancer specialist.

My very best to you and your family!
Posted 4/15/2013 12:24 AM (GMT 0)
Hi PeterDisAbelard and Putt,

Thanks for the reply and concerns. Yes, very much of a life changer!! But, both my wife and I being a PK (preachers Kids), we are believing and trusting our Lord and Savior to see us through this uncharted path. Early on in the begining, my urologist told me he was working with a team in his practice with my case. On Nov. 13, 2012, I had a second opion with one of the best oncologist in the Memphis, TN area. He told me that my urologist was on the right track and I could stay with him until the first treatment started heading to refractory, at which time I'd switch over to my oncologist. By Oct. 19, 2012, my PSA was down to 22.1 and by 11-28-2012 was down to 1.39. Last Month, it was 0.2. Feeling fine so far, emotions are really high and the HOT FLASHES are not good at all and very hard to deal with (but I am).

Since 2004, I've had surgery on my lower back (L3-4 )and upper neck (C3-4). Last week (April 8th), because of severe osteoarthritis, started my 1st of a series of three nerve blocks. Having second block April 24 of this month. My lower back and right hip\butt is very sore and when I get up, it takes a few minutes to get up to speed. Overall, doing fine under what's going on in my body. I've put on about 20 pounds since Oct. 15th and working on getting it off for health reasons.

Post Edited (grandpaof4) : 9/25/2013 10:53:24 AM (GMT-6)

Posted 4/15/2013 1:13 AM (GMT 0)
You will find a great bunch of people on this site that are here to offer their best advice derived from their own experiences.  Many had high PSA's and were GS9's.  You have a long life ahead of you, just gain as much knowledge as you can, talk to your medical team as a partner, not as a patient, and keep the faith...........
Posted 4/15/2013 1:19 PM (GMT 0)
Hi...sorry to welcome you to this club but I too can offer some positives. My husbands diagnosis is similar to yours if not quite as advanced. There are so many G9 with Mets on this board that are surviving and THRIVING that we intend to continue to enjoy our happy lives together for years and years and years.
Posted 4/15/2013 7:25 PM (GMT 0)
Dear Putt and littlenm,

Thanks for your concerns, support and encouragements!!

Last night around 8:15pm, got a call from a co-worker/good friend who needed me to come take him to the ER because he was having sever pain in his stomach. Several tests including a CT was done, everything checked out fine, just had a issure with another problem. He is working on that. Arrived home around 4:24am and back up around 7am. Off today :). Taking it a day at a time!!

Dave

Dave

Post Edited (grandpaof4) : 4/15/2013 2:16:51 PM (GMT-6)

Posted 4/25/2013 2:12 PM (GMT 0)
Hi,

Yesterday morning, had my second of three Radiofrequency treatments for lower back\hip Osteoarthritis pain. This morning, overall, I'm feeling fine. This treatment hopefully will last a few weeks and the third and final (in a few weeks) will last from 6-18 months.

Yesterday afternoon, had my monthy Firmagon (Degarelix) injection and Xgeva shot. Didn't draw blood for the PSA test as last month it was at 0.2. Past several months, I've been dealing with my emotions a lot, but I'm taking it a day at a time!!

The past couple weeks, I've been reading a lot about Stage IV Advance Prostate Cancer, to educate myself more.

about 5-6 weeks ago, started taking (Per pain management doctor), fentanyl 12 MCG/HR patch, along with break through oxycodone-acetaminophen 5-325; two weeks ago raised to 10-325 (3 a day) with fentanyl 25 MCG/HR and then last weeks raised to Fentanyl 50 MCG/HR PATCH. Before my block yesterday, none of the above meds were helping!! Last week, my pain Dr. gave me Hydrocodone-acetaminophen 10-325 which I'll start taking if need be. I hate taking so much meds, but can't deal with all the pain 24/7.

I know this soon will pass and I'll start feeling much better soon.

I know I could be much worse off and thankful for things going as well as they are.

Going to have lunch with my daughter in a while. God is so good to me..

Dave in Bartlett, TN
Posted 7/13/2013 2:21 PM (GMT 0)
Last week I had a PSA test. Sept. 12, 2012 was "128.00". Last week, down to "0.06". So thankful to God and the meds, I'm almost at the "Zero Club"!! Not been easy, but do-able!

Pray each and every day for my HW family. I'm so thankful the this site.

Have a great day.

Dave in Bartlett, TN

Post Edited (grandpaof4) : 8/25/2013 5:43:15 AM (GMT-6)

Posted 7/13/2013 3:02 PM (GMT 0)
Dave, congratulations to a fellow Tennesseean! Keep it up...
Posted 7/13/2013 3:16 PM (GMT 0)
Dave,

Maybe they will let you into Club Zero if you have a note from the moderator.

To Whom it May Concern,

Dave has a PSA that is >0.1. Please consider him for membership in Club Zero.

Yours Obediently,

PeterDisAbelard, Moderator
Posted 7/14/2013 1:42 AM (GMT 0)
Redwing57 and PeterDisAbehard,

Thanks for the kind words. Also, PeterDisAbelard, thanks for the consideration.

Dave in Bartlett, TN
Posted 7/14/2013 2:50 AM (GMT 0)
It sounds as if your treatment is really going in a positive way - it is a battle, but it sounds as if you have good support human and other walking with you. Hoping you can get control over the pain though.
Posted 7/14/2013 12:26 PM (GMT 0)
Passages,

Thanks, yes I do feel I'm going in the right direction. Since last Sept., PC is all new to my family and I. I've spent MANY MANY hours reading on the net and this site as well all I can about PCa. So much to learn and not knowing what's ahead of me at the next mountain or curve. Taking it one day at a time and everyday, thanking God for his protection.

Like I've said, I spend a lot of time on HW reading but don't comment much as I don't feel I have much to offer (new kid on the block)!!

Have a great day,

Dave in Bartlett, TN
Posted 7/14/2013 12:43 PM (GMT 0)
Hi Dave, and congratulations on the huge progress you've made - so very happy for you, and your family.

IMHO nothing beats an informed/self health care advocate, plus the support of an experienced and caring medical team, and, faith.

Continued best wishes to you.......

Posted 7/14/2013 3:15 PM (GMT 0)
Wow, That's what I call progress!
Posted 7/14/2013 3:44 PM (GMT 0)
With my newly minted Moderator Super Powers I find I am allowed to second nominations for membership in the zero club. So, congratulation and consider this an official second. All if favor, say aye. All, opposed, nay.

Having duly counted the votes, you are unanimously approved for membership.

Jim
Posted 7/15/2013 12:49 AM (GMT 0)
A Yooper, Phenom and Tudpock18,

Thank you all for the kind words and support.

Tudpock18, thanks for the unanimously approved membership. Gladly accept the membership "FOR LIFE"!!

Thinking and praying for all my brothers and sisters here that they will get better each and everyday!

Dave in Bartlett, TN
Posted 7/15/2013 2:15 AM (GMT 0)
Thanks Dave, back at you. Certainly glad they voted you in - you guys make me smile.
Posted 7/16/2013 5:20 AM (GMT 0)
grandpaof4 (Dave)....Well I a sorry to have to "welcome you" to this forum....but we are a bunch of positive folks....we "never say never"....and a very informative group with a plethora of knowledge.
You definitely have a longer life span than what the doctor advised you....we (husband and myself) have had been "fighting" this disease since 1999...stage 4 since 2011...and he's still "kicking" and smiling, pain here and there, especially when making sudden movements (getting out of chair or laying down in the bed, otherwise, pretty mobile (pain meds: Lortab 5 mg twice a day).
Husband also has the Xgeva injections once a month....he has experienced a little pain in the joints which is a "side effect" (SE). Also takes a vitamin C...just a precautionary measure for colds and infections and a "senior" multiple vitamin.
You can set up "alerts" on Google and any other search engine using "prostate cancer", and you will get a e-mail daily with articles published on this disease, some are informative and some are not....but it's a means of seeing what is "out there". Also the Cancer Network web site.
The folks who have replied to your initial posting are wonderful and I have interacted with them on several occasions...they are very helpful and supportive and that is what we need on this journey.
You have been very receptive to the medications given you and that in itself will add time to you life span......so I am glad to see that your numbers have decreased.
Hello Passages and littlenm....
Adjust.....wishing you well....I haven't seen your name before...but I am not on many on the threads...
Redwings57...yes you have another Tennessee brother....if we ever could get our house sold...we would be up that way as well....
Posted 7/16/2013 12:53 PM (GMT 0)
Dave,
Have been watching your super progress headed for the "Zero Club". You've had a great response to the meds prescribed for you. The people on this site have so much knowledge so you came to the right place. Best to you and your family!!

Robert
NC
Posted 7/16/2013 9:52 PM (GMT 0)
tednsal and time101,

Thank You Very Much for your inputs. Yes, I'm thankful that the treatments are working and praying that they will continue to work for many years to come. I'm not ashamed to admit that we know that God is with me every step of the way and looking to him for courage and strength every day. I'll be praying for the both of you and your families that this thing will pass and you become whole again. I do have a lot to be thankful for and I know that I have many more years ahead with my wonderful wife-Dorothy and our daughter, son-in-law and four grandkids (15, 13, 10 & 7).

Thanks again for your kind words and concerns.

Thankful for HW site..

Dave in Bartlett, TN (Memphis area)
Posted 7/17/2013 3:36 AM (GMT 0)
Dave
Hang in there buddy. Getting into the zero club is a great thing. Treatment seems to be going very well. If you want to look into Provenge please email me. You do not qualify yet but when the numbers start to rise, hopefully years down the road it might be something that interests you. Todd
Posted 8/25/2013 11:56 AM (GMT 0)
Todd,

Thanks for the kind words and concerns. Just taking it one day at a time and believing that the treatments will be everlasting.

Have a great day.

Praying and thinking about you and all my brothers and their family here on HW.

Dave in Bartlett, TN
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