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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2010 12:46 PM (GMT -6)   
My vacation from HW is over again, not really proving a lot.  I still have incredible amounts of time alone during the afternoons and nights due to my wife's work schedule.
 
Today, I had my first full out patient physical therapy session.  Got my feelings hurt, thought I was doing better on my own, but when I was professionally accessed, the trainer said all my muscle tones were in terrible shape due to athropy after this last surgery.  At first, I will be going 3x a week, later it will be moved to 5x as I build some strength and endurance.  Good news, the therapy center is only about 4 blocks from the house.  Every 3 months, they will see how I am doing, and extend for 3 months periods as needed, and for as long as needed.
 
I see my uro/surgeon on the 29th of the month.  It will be the 2 month check up post surgery.  I am thankful I am able to drive again at this time  (though I am wasted after more than about 20 miles of driving), and I am hoping he will up my 5 pound weight limit.  Even if he upped it to 10 lbs, it would be a big help.
 
I am back to doing all the lighter housework again, with the exception of vacuuming or mopping floors, both of them are way too much for me currently.
 
Only gained back 6 of the 41 lbs I lost rapidly.  They are glad for that.  Still not eating any sweets or junk foods, my body still doesnt seem to crave it anymore.  Also, can't stand the thought of anything fried or spicy.
 
I think about my PSA still, despite putting off my November reading, but I am sticking to my plan to wait till Feb 2011 to get re-tested.  Determined to have a nice holiday season this year, not for me, but for my family and grand kids.  The last 2 seasons were miserable due to my medical woes, I want to give them all a break.
 
While my inclination is not to go to HT in the future if proven needed, I have been reading all I can on the subject.  Until I have to make a decision, its easy to say what I would or wouldn't do.  If the current thinking on Strong PSA Velocity cases hold true, then all I have done so far, i.e., Surgery and SRT, has been a waste from the start.  In these cases, from what I have been learning on my own, and talking to another medical oncologist, it's highly likely that HT wouldn't last long with me even if I went that way, it would become refractory fairly fast.
What I have going on, is a much faster progression of PC then others, even though on paper I am a Gleason 7.  Thus, emphasising the point that some Gleason 7 cases can be as dangerous or even more dangerous than even Gleason 8/9 cases.  It may be the case of one of the agressive strands of PC that Zufus talks about.
 
My mind is not 100% made up, but I am still not inclined to want to go the HT route if my SRT fails.  I hear a few positive storie s here at HW about QOL from some of you guys, but I read far more worse stories about side effects and QOL issues away from HW.  Considering that both times that I underwent major radiation, I did terrible, I would not expect to do well under HT.
 
Pain I understand.  I just came out of a year of daily, chronic, and severe pain related to the radiation damage.  Meds can take care of a lot of pain.  I don't want to end up not being the person I am, I don't want to be depressed because of HT, I don't want to deal with hot flashes, weight gain, bone deterioration, and all kinds of mental and emotional troubles.  Its a choice each of us has to contemplate if faced with the prospect of advanced PC, where you know there is no possible cure left on the table.
 
For all those that are on HT, and doing well, and buying time, my hat is off to you.  I don't think its wrong, its back to what is right for you, and trade offs a person is willing to take.  One of the hardest formulas to balance in one's personal existence, is the classic quality of life vs. quantity of life.  No easy or one-fit answer there either.  So very personal.  No right or wrong either.
 
David in SC

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 11/18/2010 12:50 PM (GMT -6)   
Welcome back, David..... wink
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2010 12:52 PM (GMT -6)   
Was going to wait till first of month, but not really proving anything to me at this point. Would rather be here trying to help others, then just sitting around thinking about my own situation.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3989
   Posted 11/18/2010 12:59 PM (GMT -6)   
welcome back Dave!  if you want to gain weight i strongly recommend HT.  i have been avoiding the scales lately but today i weighed in to see that i have gained 25 lbs. in a little more than eights months.  with the weight gain and bloating i have been experiencing lately i feel fatter than a blue ribbon hog cool !
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 11/18/2010 1:00 PM (GMT -6)   
Really glad that things are getting better for you. Keep busy if you can. Maybe start a new hobby, painting, drawing, writing and so on. Just keep your mind active. With Thanksgiving around the corner, a celebratory feast should be in order. I think a bunch of us would join you if we could. Best wishes and continued healing. Well.
Age: 54- good health, physical anyway. Tinkle alot at night- 4-6x's

DRE 11/08- no lumps, just enlarged prostate

1st PSA, total- 11/08= 6.1

2nd PSA, total- 8/09= 6.6 Referred to Dr. J. Hoeksema @ Rush Univ. Med. Center/Chicago

Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen. Prescribed Flomax for excessive peeing.
Second opinion 1/21/10 with Dr. Gregory Zagaja, Univ. of Chicago Med. Center

3rd PSA, 2/10= 7.9 Still on Flomax, but thinking of stopping as it's not doing much of anything.

4th PSA, 6/10= 7.3 No longer on Flomax due to weird side effects

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 11/18/2010 1:03 PM (GMT -6)   
Welcome back, David.
 
Good luck in whatever you decide regarding HT. Hopefully you won't have to face that decision.
 
If I get to that point, I would probably do it. As you know, there are plenty of reports on SEs. None of them are good, but many claim it isn't too bad. I guess if it is intolerable, then I can stop it. Basically, my fear of succumbing in a miserable way to PC trumps my fear of HT. Anyway, as you said, that bridge remains to be crossed.
 
 
You and I share similar fears/concerns, although I am "one treatment behind you."
 
I will actually do my next PSA on 12/30 or 12/31. I am supposed to do it on 12/21 but who wants to ruin the holidays?
I am over my maximum with my insurance so further expenses are covered 100% in 2010; hence my decision to do the PSA at the end of December. I will not get the results until after 1/1/11 (I fear it will not be a good welcome to the New Year).
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2010 1:24 PM (GMT -6)   
thank you 8, nah, i had to pay a high price for this weight loss, not eager to have it back

thanks wigged, thanksgiving dinner itself is not much of a draw for me, as i don't eat much at one time these days, eat like 4-5 small meals a day, they said that was better for me at this time

mel, the actual thought of dying isnt a big issue with me, i know i have to have an appt with the grim reaper at some point. and with proper pain management and good hospice care, the end doesnt have to be the traumatic thing we envision sometimes. there are plenty of other horrible ways to die outside of cancer. when i was much younger, i use to counsel with terminally ill cancer patients, including those with pancreatic cancers, etc. with one exception, all the death bed scenes i witnessed were peaceful and the pain was controlled.

thats why each of us has to weigh out the quality of life issues, and of course, depends what age the patient is in, in a discussion like this.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3891
   Posted 11/18/2010 2:21 PM (GMT -6)   
Dave, cheer up!! And get more exercise! You CAN vacuum the floor!!

I recently talked to the widow of a PC victim who from diagnosis (way before PSA testing) to death lived 18 years..He was diagnosed at age 50. He was able to drive a car until six weeks before his death. He died at home, no hospice care, and suffered very little pain.. Fatigue was his major PC symptom. One night he got into bed and never got out...He tolerated the ADT that kept him alive quite well...

This mans story is probably exceptional, but it's true and must be considered..

There is a new ADT drug called Firmagon..Monthly shot. It drops your "T" to below 30, sometimes below 20, in a week..No casodex needed. If needed (aren't we getting ahead of ourselves here?) you could try it for a month or two and see how you tolerated it..If it turns out the QOL price is just to high you can stop taking it and they say things return to "normal" pretty quick..

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1162
   Posted 11/18/2010 2:37 PM (GMT -6)   
Welcome back, David. It's good to see you back in the fold.

It sounds like you're on a good -- albeit slow and frustrating -- path with physical therapy. Hang in there, man. I hope you get to where you can take more exercise; it's the best anti-depressant there is. I think you'd feel better for it.

I hope you don't get to where ADT becomes a reality, but these are things we take one step at a time. I haven't been through anything like what you've been through, but I try hard not to think about what that next PSA score might be, and what might happen then. It's all wasted energy until you really need to think about it. I hope you just focus on healing.

Best to you always, David. A lot of people here care about you. Heal well.

Jonathan
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/18/2010 3:31 PM (GMT -6)   
All I can say is good. You have always been too valuable a member for us to lose you. Some may offer up more technical advice but you are a pillar of the Healingwell group. Sometimes it is easy for us to forget David just how tough your road has been and how crook you have felt ------- because you have maintained your support for others through thick and thin despite your personal woes. I totally agree with you on the PSA ....... it can wait till another day. Time for family and and yourself. You can't keep a good man down.
get well quick,
Bill (in far north Queensland surviving on tropical fruit and seafood yeah)

Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 11/18/2010 4:05 PM (GMT -6)   
Welcome back this forum is not the same with you not posting.
Age 68 weight 185 height 6'
Samples taken 4/19/2010 sent to Bostwick
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%
PSA 3.5 Mar 19
PSA 2.5 Apr 4
Bone scan clean CT scan clean
Da Vinci 10/12/2010 DR Paul Kahn all nerves spared
Home 10/19/20
Cath out 10/22/2010
Prostate 56 gm. Gleason grade 3+4 = 7

Bandersnatch
New Member


Date Joined Sep 2010
Total Posts : 16
   Posted 11/18/2010 4:22 PM (GMT -6)   
    It is good to hear from you, thanks for your input on this forum. I think physical therapists must have some kind of training in creating pain. My experiance with them has always been helpful but painful.  Good luck on your recovery. 

Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 11/18/2010 4:25 PM (GMT -6)   
Glad to see you back, David.

Please think about the HT, it's keeping me going according to my onc.

I know, I've got a bad prognosis for long term but I only worry about today, when possible.

Please read my update in my thread, posted around 1:30 today.
I'm hoping I'm still in the same boat after the scans, as I feel quite well now, thankfully.
I hope that in a few more weeks, you'll be feeling much stronger and have more stamina and a better appetite.
 
As you feel better, things will return to normal for you!
 
 

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 11/18/2010 4:28 PM (GMT -6)   
Hi David. Glad to see you back on the forum and to hear that your recovery seems to be on track. You've changed your mind when you stated that you would be gone from here for a long time..........when and if the time comes for you to consider HT treatment, I hope you change your mind again. I know you're a fighter and would not let the cancer win without giving it all you have. In any case, I wish you and yours a happy holiday season.
All the best to you for next year.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 3+4=7, Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 11/18/2010 4:56 PM (GMT -6)   
Welcome back David, we missed your posts. I'm glad you are progressing toward normalcy. I sure hope you never have to have HT but if it comes to that then I'm sure you will make the right decision for yourself and your family.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/18/2010 7:58 PM (GMT -6)   
Good to hear from you David. Sounds like the pain has decreased so that is a positive. Good idea about enjoying the Holidays and man you can afford to eat all that you want or can.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 11/18/2010 8:04 PM (GMT -6)   
David,
 
Glad to hear you are restless enough to come back. Its a good sign.
I'll tell Mom that we've heard from you - she will be glad that there is news.
 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2010 9:01 PM (GMT -6)   
thanks one and all. appreciate your support and care, as we are all in this battle together. just different fights on different days. and 142, tell dear Mom hello from me!

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 11/18/2010 10:13 PM (GMT -6)   
David,
Glad you are doing better. Remember that HT is not an absolute like surgery or radiation. You can start it and if you find out you don't like it then you can stop and be back to where you were in a couple of months.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/18/2010 10:54 PM (GMT -6)   
Good point, John, I am aware of that being a possible course of action if it comes down to a decision in the future. My problem, if there is an obscure side effect out there, I will have a way of experiencing it. After getting so "burned" so to speak with SRT, its easy to see why I am gunshy of any other major treatment, especially one that has no chance of being curative.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 789
   Posted 11/19/2010 1:39 AM (GMT -6)   
Hey David!! glad to see you back, I too have put off my PSA until February 2011, just want a rest from it, Billy mac, funny to see the word "crook" , a real Aussie saying...lol

All the best David.

Mal. (70 years young and still going strong) yeah
age 67 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7 right side tumour adenocarcinoma stage T2a
RP on 30th July,

Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck,are free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.

Post op PSA 0.5 26th Sept. Totally dry since catheter removed
PSA 23rd Oct.0.5 seeing Radiation Onocologist 31st Oct.
Started radiation treatment on 5th Dec, to continue until 24 Jan. 08.
Finished treatment, next PSA on 30th April.
PSA from 30th April 08, until now range- 0.5 to 0.6, I am now 70

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 11/19/2010 5:11 AM (GMT -6)   
Hello again David,

Your posts and replies sound a bit chirpier!

Popping in to visit HW is sometimes a lot easier than popping out to do things. (And sharing thoughts here is better than wandering around the house talking to yourself!)

I'm also a housework husband. I know what you mean about vacuuming. Vacuum cleaners suck!
It's amazing how much it makes your abdomen twist.
I now have a very small Bosch, it still manages to deliver 1600W, but is easy to use. Not so easy to move the furniture though.

I was also thinking of you and your 5lb limit when I realised that our milk comes in 2 litre packs that weight 4.5lbs. Think of me living on the fourth floor and carrying all the groceries up - after doing that every day you hardly need to use weights as well.

Don't worry about HT yet mate. (Though, like you, I worry about the "nasty" Gleason 7 side. When my PSA shot from 0.1 to 0.4 that sort of velocity made me wonder if I had't had surgery whether my original 9 would have shot to 40)

Billy Mac is there still a giant pineapple on the coastal highway in Queensland. (My wife saw it as a kid when they lived in SA)

Alf

Post Edited (English Alf) : 11/19/2010 3:31:02 AM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/19/2010 8:10 AM (GMT -6)   

David, I've not been as active here as I usually am but I've stopped by periodically and read your posts.  While your "vacation" may have been short, you were missed by all your friends and fans here.

opening up my arms welcoming you back "home", Sephie (and John)

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/19/2010 8:14 AM (GMT -6)   
Alf, I am retiring from mopping floors and vacuuming for the short term. I use a mini vac that can suck the varnish off the floor, but its the motion that causes me to hurt for hours after. Milk - we never buy more than 1/2 gal US at a time, so not heavy. Our house is ground level on the front side, and two story on the rear side, as its built on a hill. Only steps go down to the basement, which at this time I dont go there often.

And poor Billy Mac, can't help himself, his Oz ways keep him an odd duck, lol. Glad he's enjoying his holiday.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 11/19/2010 8:43 AM (GMT -6)   
Welcome back David, Glad to see your getting stronger. Give my love you Peg and enjoy the holidays. I would be in a heck of a mess if I could not eat spicy food. LOL

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED
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