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What does a PSA level of 600 mean ? / Gary has Passed.....

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

I am writing about a friend, who is 72 years old.  I have had lymphoma myself, but never prostate cancer (I am currently in full remission from lymphoma), and know relatively little about prostate diesease.

My friend Gary had his prostate (surgically) removed 13 years ago, and went cancer-free for 8 years. His PSA shot back up five years ago, and he has done radiation, hormonal therapy, and chemo in the last 5 years.  He was told he is terminal, and had perhaps six months to  live, two years ago.  During that time, he has been on two pallatative drugs, both of which brought his PSA down from 266 to around 50, for a while.

His PSA level last week was just shy of 600. The doc told him he would put him back on conventional chemo to extend his life, but he is refusing that at this point. The doc wants to speak with him again in two weeks.

He looks terrible, and about four months ago started losing weight, and has become quite skinny. He still drives and gets around a little, but is obviously very weak and frail. He says he feels no pain anywhere.

My blunt question to anyone who has studied high PSA readings is this:  Can he possibly have long to live ?  I visit him often, and am trying to do what I can for him, despite not being a relative.

Any insights are appreciated,

max

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Sorry for your friend, but I think the battle is not over. With a psa of 600 not good at all, He should get to a major cancer center. I know of some guys at MDACC having 1200+ psa and getting better. Now this one guy psa is 55, and he is looking better. Never Give Up!

If the cancer is not in a organ like the lungs, liver, or brain. I not a doctor , but the Chemo i don't think is the right choice. There is other medicine out there like Zytiga.

Has he had a CT scan, bone scan?

 

 

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Max,

I am sorry to read about your friend's situation.  From what you describe it looks as if he may be entering the final stages of his battle with this disease.  Without knowing all the details of the original diagnosis it is difficult to second guess anything but it seems as if the cancer had already spread at the time his prostate was removed and the cancer now seems to be at full throttle.  PSA increasing for a prostate cancer patient is an indication that his cancer is spreading and in his case it may well be in more than one organ.  Treatment options at this point are moot.

Frankly, I agree with your friend's refusal to take chemotherapy.  I've never read of a situation where advanced prostate cancer was cured with chemotherapy.  While it may prolong his life incrementally, the quality of his last days will be ugly.  If his joints become painful, spot radiation may help alleviate the symptoms but it will not cure him.  

I think you should be supportive of his choices, gently suggest hospice, and do what you can to make his remaining time meaningful.  Nobody knows how long these things take but they do follow a predictable course and he seems to be nearing the end.  

Best to you and your friend.

 

K

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

I am appreciative for the resposes. I mentioned his PSA when it was 266 many months ago to my family doctor, and he (although not an oncologist) responded: "It is in his bones then, if it is THAT high."  He is not wealthy (social security and a small retirement pension), so a trip to Sloan or MD Anderson is out of the question.  He was on Zytiga for a few months -- it is the drug that reduced his PSA from 266 to 45. Obviously, that was a dramatic improvement, and improved his morale dramatically as well.  It must be a very good drug with a lot of promise, but I understand it is not intended to be curative, at leasst when a man has astronomical cancer involvement like he does.   I hope Zytiga is a blessing for many here.  Gary (my friend) went off of  it when his PSA started to climb back up.  The cancer center has been looking for some other new or experimental stuff, but it may be too late.  I suspect that the oncologist is going to pescribe Hospice when he goes back in on the 13th. Currently, he gets a home health visit twice a week, since he lives alone.

I know he has beaten this against all odds, and has turned a six month prognosis into two years. Yet, he has never before looked like he looks now. He has never seemed this beaten down.  My read of it is that he is close to the end, and his body is telling him that as well.

I had another friend whose progression was very similiar: Prostate fully removed. He later got recurrence in the bones, and lived 12-13 years, exactly as Gary is apparantly going to do.  He was around the same age at the end: One 72, the other, 74.

I know on the one hand that may not seem like a lot, but their 13 extra years were a blessing to us who knew them.  I mostly just use the lymphoma boards (my former disease), where people get sick, and some die, as young as their teens or 20s (I am 57 now).  My general impression of prostate cancer is that it is at least usually very managable, and new drugs (like the Zytiga) are being introduced very rapidly.  As I read more and more about it, I am also struck by how many treatment OPTIONS early prostate disease has. Men can chose numerous approaches, whereas lymphoma is usually "chemo or death."

Bless all of you, and may good news come your way soon,

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

Gary went to the oncologist  today. He gives him a month to live with no meds, but said that chemo could possibly extend that to a year or so, maximum.  Gary is a bit hard-headed, and agreed to see how badly one infusion would do him, and decide after that whether to continue. Taxotere is the drug, I believe.

The doc told Gary that he estimates his current PSA to be around 900....  Any thoughts are welcome and appreciated.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

I took Gary for his first infusion today. He has started Jevtana.  His N.P. sounded optimistic that it could give him many more months, if not another year.

He is totally clear-headed, and has never had any pain anywhere.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

I took Gary for his second Jevtana infusion today (it is given once every 3 weeks).  His PSA is now 935.   The nurse practioner told us that it is not uncommon for the level to climb between the first and second infusions, and that the level should begin to drop soon.  He is very weak, but still has no pain. He has never had prostate-related pain, in the 13 years he has fought this.  While his treatment may seem ridiculous to some, or a "whistle in the dark," I thought that an account of his end-stage results on this fairly new drug might interest some one.

max

hopeful and opt...
Posts: 1278
Joined: Apr 2009

You are a good friend.......... many times there is a range of success and longevity from treatment.........I wish your friend  the best....

Thank you for posting.

H  & O

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

For eveyone's information:

Gary is still among the living. I take him for his 3rd Jevtana tomorrow (Tuesday). I will find out if his PSA is dropping from the treatments (last number was 935 !).

He is the "Energizer Bunny" to me ! Prostate cancer for 13 years, stage 4 for two years now. He has NO PAIN.  He is weak, and lost 4 pounds over the last two weeks, however.

I will advise how he is doing within a few days.

There are so many new prostate drugs !  There is much cause for hope with this disease.

max

elpasorudy's picture
elpasorudy
Posts: 78
Joined: Jan 2013

Is your friend coping OK? Wishing you both the best.

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

elpasorudy,

Gary gets around a little, and still eats OK. More than about 50 feet of walking does him in, however. He is sleeping more and more each week, and is losing about 2 pounds per week, which cannot continue forever, obviously.  His mind is totally clear, with no confusion or memory loss.  He is calm, and seems unworried.  As I said, he has no pain, and has never had any pain. He takes no form of pain medication.  But, the rapid weight loss, the sleeping all day, the astronomical PSA : I know they are all "signs."  I am not related to him, but his nearest daughter lives 450 miles away. I and another of his friends do what we can.

TODAY I learn if the Jevtana is doing him any good or not, after two treatments. He ran the course with Zytiga last year, which dramatically dropped his PSA for many months. Zytiga is apparantly a very helpful drug, for people in end-stage disease like him.

Your uniform looks like a Navy Ensign ??  I was a fast-attack submarine sailor (fire control) for six years. I wish I had stayed in, since I would have been retired several years ago. One of my former C.O.s later became SUBPAC -- a Vice Admiral !

max

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

We got Gary's labs back during his infusion today. After two infusions of Jevtana, his PSA has dropped a remarkable 300 points !

970 to 670 -- he was so happy his eyes watered up. 

I know I do not always read through each submission in a thread when a new post comes in, so I will mention again that Gary had previously gotten good results with Zytiga last year, but it had quit working, and in fact his PSA started to climb on Zytiga.  To me, that makes the effectivelness of Jevtana even more remarkable.

max

http://www.jevtana.com/jevtana/about.aspx

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moonlitnight
Posts: 52
Joined: May 2013

Hi Max, I am happy your dear friend is doing a little better. With respect, how dare ANY doctor "give" anyone a specific short time to live. Is he/she not aware of the nocebo effect (or for that matter the placebo effect, which is more powerful than chemo)? This isn't "woo" stuff. Many books and articles have been written on it, many by top doctors. Of course, it is difficult to run a clinical trial! Maybe your friend should hear the words, "Your situation is grave, but we are going to do everythng we can for you. There are cases of people completely overcoming end-stage cancers and, although rare, there is no reason why you can't be one of them." But the establishment fears giving "false hope" so they give no hope at all. My very best to you and Gary.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Joined: May 2012

Moonlight,

Thanks for your insights .  My last post was over a month ago, and a good bit has transpired since then.  Gary is a bit pigheaded, and as he had not been willing to take any form of treatment for several months since Zytiga became ineffective for him, his PSA got up to as high as 975, and was rising fast.  The doc was trying to let him know that doing nothing was failing him, fast.  I was not present, but I think it was more of a wake-up call than a precise estimate.

As I wrote above, Jevtana knocked down his PSA at first, but things have deteroiated badly since then.  He developed a severe diahrrea, which ran three weeks.  He ate nothing during that time, and did not hold more than perhaps 300 calories a day from liquid nutrition.  He was given three perscription anti-diahrrea meds, including an IV form, but it did not slow it at all.   He has been hospitalized over a week now, and can drink on his own, but has not eaten more than a nibble here and there.  He cannot stand up or roll himself over in bed.  He is clear-headed but profoundly weak, sleeping about 20 hours per day.  His N.P. said they do not expect to give him more Jevtana, since the diahrrea is a commonplace problem with it in some patients.

I know that most writers here are early-stage and looking for ways to remain healthy, and that discussing a PSA of 1,000 may seem odd, but Gary's journey may interest some who are farther along.  I had another friend whose path with Prostate was very similiar, and he made it 12 years with the disease before passing.  Gary has been remarkably similiar, and is now in his 13th year since surgical removal.

Best of luck to any and all on the Board,

max

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Max

I am sorry for the news about Gary. Probably no medication is better at this moment. I hope he returns to the stage where he can eat what he likes. He has already defied the odds two years ago when told of the six month living period.

We all appreciate very much your posts about Gary’s treatment. Many participate in this forum but only read what the others write. Pretty sure that there are survivors with similar status reading the stories of your friends.

Thanks for posting.

Best wishes.

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Thank you, VG. 

Gary is now passing blood heavily through the urine, but the doc thinks it is from platelet issues, not urinary track failure.  He has also become bloated, and his forearms are very swollen.  His hands are turning blue, possibly from bruising.  His eyes seem to have a hazy covering over them. He is beginning to talk nonesense at times, which is worrisome.   He is refusing telephone calls routinely now.  

His doc told me yesterday they are "looking for a rehab center that will take him."   I guess not all of them are set up to assist a 72 year old man who cannot stand up, has not eaten in four weeks, and who is in diapers over a month now.  His response to the doctor's comments: "I thought I was about to head home ! I did note expect to need rehab again !"  He is completely unaware of his situation.   I will be surprised if Hospice is not his next stop.  God bless him, regardless of the future.

I love your screen name.  I earned the Order of Magellan when in the Navy -- submarine service.  It is given for going around the world, which means of course passing every longitude.  Some would say we "cheated": We went to the North Pole, and did a 360 turn !  By definition, it counted !

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Gary finally passed on today, thirteen years into the Prostate battle.  

He had surgical removal in 1999, hormonal therapy, a lot of radiation in the pelvic area years later, conventional chemo years after that, and over the last three years or so, Zytiga and then Jevtana.  He was in Hospice this last week, following about a month as an inpatient in the hospital.

Most of his years were very good years. Cancer care gave him over a dozen years of quality life.  Except for the surgical removal, he neve had prostate pain in his whole experience .  He never had pain, even in Hospice, and was not getting pain medication.  Up until about two months ago, he was getting around on his own and enjoying himself every day. This, with a PSA at one point of nearly 1,000 .  He was clear-headed and coherent until about his last 48 hours.

I consider him a remarkable SUCCESS STORY and HERO in the fight agains this blight.  Bless all of your and your own battles .

max

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I am sorry for the loss of your good friend.

My sincere condolences

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Max,

 

So sorry to hear of the loss of your friend, Gary.  You were a true and faithful friend to him and I know your presence throughout these last months were a comfort to him.

 

K

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Max

I send my sincere condolences for Gary's departure.

You were a great friend of him and he did appreciate your care.

Yes, he was one of us, a survivor and a hero in this fight. 

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I am also saddened at the loss of your friend. Thank you for the care you provided to him.

 

lewvino

Trew
Posts: 891
Joined: Jan 2010

Its been about a month since Gary died.  Just reading all the posts I must say how fortunate Gary was to remain so pain free.  Often end stage PCa is extremely painful. 

 

For us who remain, how thankful we are for life.  Stories like this keep us in touch with what can happen to any of us.

-Trew

klinefinancial's picture
klinefinancial
Posts: 19
Joined: Sep 2001

Thanks for sharing Gary's story.    It confirmed what I believe is that the chemo does not work.

I have a psa of 537 and aberaterone didn't work for me so I have stopped all treatment now for 3 months....

I too have been around with advanced PC starting at a psa of 72 in 2001 for over 12 years....and I too have had no pain from the cancer ever.   I am 67 and hope to make 70.   Taking only adderal for energy now and flomax to help pee.....a little celebrex for the arthritis and some sleeping meds at night......

 

Other than horrible fatigue am pretty much sympton free....doesn't seem to be any real treatment choices at this stage of the game.....will restage in January and meet with Dr. Small at UCSF......and review at that time.

 

Looked into the Simpson Oil but side effects too hard for me to handle....am very sensitive to drugs and get all the side effects in spades......

whooooooosh  looking for a miracle.

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