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Welcome new member Mark0 - G9 Stage 4

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Posted 8/22/2014 12:46 AM (GMT 0)
Please welcome our new member, Mark0. His first post was on the G9 Crew thread, and I'm copying it here so the rest of this warm forum can welcome him too.

Mark0, sorry you need to be here but glad you found us. The G9 diagnosis is really a challenge, but as you've seen on the G9 Crew thread there are quite a few of us here, many doing pretty well. Thanks for sharing your story with us, and I expect many others will be by to welcome you too.

Here's Mark's first post

Mark0 said...
Greetings,

Oh wheeee... I guess I'm a member of this crew. (ducking!)

How did it start?

While I was thinking I had "irritable bowl syndrome" the frequency of my urination kept going up, my "stream" kept getting weaker and close to the end I was rather painful to urinate OR have a bowel movement. I'm 55yo.

Initial findings

A visit to my GP got me a DRE and a host of blood tests, including a PSA. DRE revealed "large, hard and lumpy". My 1st PSA test in Feb 2014 = 390.
2/14 PSA 390

I was quickly referred to a urologist. (who ordered another PSA = 320)
3/14 - PSA 320

A CT/CAT and MRI scan later I was scheduled for a 12-16 sample biopsy. I got to tell you, it was the WORSE living HELL that I was ever subjected to. None of the pain meds did ANYTHING. I nearly passed out in the office. They kept me there for 2hrs before I went home (was 'sold' as a return to work thing) and stayed there and took the next day off work.

All cores returned positive. One core G=7 and all the rest were G=9. The cores+scans showed the entire prostate and seminal vessels plus lymph node involvement.

Referred to trial

This was a complete waste of time. They did however downgrade/upgrade me to S4 and added "metastatic to lymph nodes" to my chart.

My urologist started me on 1mo of Casidex and then ~2weeks later my 1st Lupron 4mo shot.
6/14 PSA 58

At the beginning of Aug 14 (ahead of my next Lupron shot) I got another PSA test.
8/14 PSA 37

I had suggested that we get a serum testostrone reading at the same time as my PSA but the idea was nixed by my DR. After getting the PSA 37 4mo's after my 1st Lupron shot he ordered a testostrone level test. T <=10. The Lupron appears to be working. My urologist just this week added Casidex to my daily meds and now wants to see me in 2mo's (October) 2mo ahead of my next Lupron shot.

How am I doing?

Besides getting over the initial shock of the diagnoses I find the lack of energy, continued loss of sleep (because of multiple bathroom breaks during the night), general "foggy" feeling coupled now with aches+pains in my ankles and lower back+hips and weakness in my legs. The "hot flashes" gave me much respect for females that tend to live through them at some point in their 50's. I've gotten an extra med that makes the hot flashes more bearable but they seem to be triggered the worse at night (while attempting to sleep) or right after having a meal.

I still work full time but have little energy to do much else. I'll often end up trying to get 10-12hrs of sleep and only get a fraction of it. At least 1 day every weekend is spent in bed resting. I don't have a sex life. Little to no interest. No response to "stimulation". To paraphrase Dr Mcoy on Startrek: "his junk is dead Jim".

I've read a study where sometimes a slow drop to the PSA low point has better prognosis but its rather distressing that with T<10 and my PSA=37 ~4mos after starting Lupron.

I/we were rather hoping to get some mileage/time of ~3yrs out of the 1st round. I'll have to wait and see what October's number brings.

Posted 8/22/2014 12:21 PM (GMT 0)
Welcome Mark to our forum!

You are not alone. We all share what it feels like to be told you have PCa or having a loved one being told that they have that diagnosis.

A Gleason 9 diagnosis and a high PSA score makes it even tougher.

But as you see from this site there are many people with Gleason 9 cancer living working through their issues and finding ways to live with their cancer. And there are many people on ADT that share experiences and advice on how to best get through it.

The biopsy that you had sounds pretty horrendous and we have a variety of reactions to biopsies at this site. Some people have seemed to find them a little uncomfortable but pretty painless while others have find it to be an awful and painful procedure. Some people report that it is related to which urologist they use.

I do notice on your post that your urologist is administering your lupron shots. Have you seen a specialist oncologist?

Regards,
An
Posted 8/22/2014 6:34 PM (GMT 0)
I echo what An alluded to.

As a G9, recommend you have a team of doctors, a urologist, a radiation oncologist and a medical oncologist with as many as logistically possible from national PCA centers, and not all from the same practice to avoid any potential conflicts of interest such as internal bonuses for use of newly purchased equipment.

Once on hormonal therapy the Lupron or Firmagon is tough on cardio metrics, so keep your cardiologist in the loop.

Then you will likely add Xgeva or Zometa to avoid so called adverse skeletal events like spinal compressions and bone fractures. Before you do that, make sure your dental work is up to date as tooth extraction while on Xgeva or Zometa can sometimes cause lockjaw like symptoms.

I was a lucky one who has no pain and few side effects from Lupron. The side effects vary widely from man to man.

LupronJim
Posted 8/22/2014 7:35 PM (GMT 0)
Hi Mark,
Welcome to the lower depths. You know guy, you are the first poster that experienced the same pain level as I did during my biopsy. In fact. That is the pain level I use when they ask me to rate my pain . . . Biopsy gets a 10! I wonder why? I also woke up from twilight sleep during my only colonoscopy, the nurses said that I was whimpering please stop, no stop and then I got up and made a terrible mess. They cleaned me up and put me in recovery where I fully awakened. All I remember was a pain and saying stop. I guess that my rectum/colon is especially tender.

That's interesting that you were put on Casodex so late, they usually start that on day one after biopsy. Well ADT on Lupron has worked great for me, check my signature. Wish you the best of health and no more bios without general anesthetic, lol. . . .Q
Posted 8/23/2014 5:25 PM (GMT 0)
Welcome Mark, sorry you've joined the club...

My biopsy experience was much like yours; the only thing in my life that came close to that was a root canal without Novocaine. There are a lot of options out there after the 1st line ADT. Maybe I missed it, but were there any bone lesions?

Keep in touch. All my best to you.
Posted 8/24/2014 6:18 AM (GMT 0)
Greetings all, thanks for the welcome.

"team" - I suppose that before all this is said and done I'll have seen a bunch of Dr's with all sorts of specialties. Currently I just have the GP and Urologist. Mostly because surgery as not an option and ADT in 2014 is seemingly academic for for my case. While the jury is still out on how well or IF the ADT is working I'll be passed to Oncology once we've decided it is not or no longer working. The Urologist prescribes the shots and I drop by a nurses station to have it administered.

Meds - while Cassidex was used to suppress any 'spike' a the start of Lupron, adding one drug at a time after knowing how well (or not) the last one is working makes sense to me and and I've found a rich history of that practice. It is my understanding that much like any type of HT these things generally have a limited duration of usefulness and loose their effectiveness over time making another argument for waiting to use both at once.

I now have open prescriptions for: Lupron 4mo depot, Cassidex, Megistril and Flowmax.

Bone mets - while they ran multiple imaging scans when I was first diagnosed (and did not notice anything), it is quite possible that the imaging systems used were unable to detect mets that were there. I've since noticed my lower back and hips hurting. Earlier this weekend I woke up and could of swore that a portion of my right leg was numb. Some of the lower back pain and oddities with my legs and feet could be symptoms of ADT, me being overweight or simply mets that had not grown large enough to be detected or cause issues at the time the scans were done (Back in Feb/March 14).

Next steps - As already mentioned, when the primary ADT fails I'll likely be referred to Oncology and/or a someone who can prescribe/perform radiation. The 2nd round of HT may include a new protocal recently developed by OHSU which involves using a number of "blockers" at the same time. (and getting a gain in time over using them serially)

If my back+hips+legs keep bothering me I'll contact my DR sooner than October and see if we can get new scans done.

Sex - my partner and I don't really care that my "junk" is mostly to completely "dead" or "broken" or useless. Still not something that was really mentioned when I started ADT.

Megistril - I think thats the name of the stuff I take every other day in attempts to control the hot flashes. Sometimes it helps others not so much.

Frankly I'm not sure what to think of some of the national 'publications' mortality estimates. While they all mostly discount "quality of life" and assume any patient would go through anything to remain alive and I've been able to easily plot out 5-8yrs of different treatments. It would appear however that many of the numbers are weighted with cases <G8, <PSA100 and < metastatic and may be overly optimistic especially when "quality of life" is considered.

I plan on applying for SS-DI when I advance to HRD and it is fully documented.

Post Edited (Mark0) : 8/24/2014 12:24:49 AM (GMT-6)

Posted 8/24/2014 8:54 AM (GMT 0)
MarkO,
Start your SSDI app. ASAP as your lump sum payment begins the day you apply. Check my sig. and you'll see that our cases are similar . . . I got my approval within 9 months when it usually takes 2-2.5 years. All this WITHOUT a lawyer. Please feel free to PM me on this issue as I did the same for my CP wife and others. What can you lose, my advise is free . . . Q. yeah
Posted 8/24/2014 2:24 PM (GMT 0)
Quincy: Did you file under the "COMPASSIONATE ALLOWANCE" program (which I'm lead to believe is 6wks approval time with the proper documentation) /secure.ssa.gov/apps10/poms.nsf/lnx/0423022282?

It is my understanding that: "Listing-level criteria requires Prostate Cancer to be either: metastatic (Stage IV) to lung, liver, or other internal visceral organ (excluding bone metastases); or progressive or recurrent despite initial hormonal therapy."

All: My current questioning revolves around what (if anything) is being indicated by my seemingly slow PSA drop.

Sadly I don't have the links saved on the current computer I'm using so I can share them, however I've read a number of articles and studies on PubMed where they attempted to use "time to nadar" and "nadar value" (along with other test scores) as diagnostic indicators for how long ADT might work before the PC progresses to "hormone resistant" and/or "hormone refectory" status.

While having a nadar value < 0.2 is easily understandable as a "good" prognostic indicator I'm somewhat confused on the "time to nadar" as (unless I'm reading it way wrong) it would appear that a longer time to reach nadar (>12mo) has a better outcome than <3mo to nadar which to me is counter intuitive.

While my Urologist was of the opinion (based on his personal experience and education) that we might/ought to get ~3yrs out of ADT before it began to fail at the time I was diagnosed we were both expecting (or hoping) for a > 90% drop on PSA value in the 1st if not the 2nd post Lupron shot PSA tests.

What should I make of a <90% PSA value drop (320 to 37) at 4mo's?
Posted 8/24/2014 2:39 PM (GMT 0)
Marko,
My two bony mets were considered too small for that program. I filed under the standard SSDI format which I would advise you to do ASAP as it may take awhile to reaches Com. Allow. Stage.

On the <90% drop on first shot I would be a tad concerned but not over the top. Some people react quicker to ADT than others. You still have another 4 months coming. See my signature for the possible responses to ADT. Are you also on Casodex? That can make a difference. Best wishes . . . Q

PS: I just noticed that my sig. Doesn't shoe that with Lupron and Casodex my PSA went from 511 to 2.7, and I reacted quite well to ADT, seven years before failure. Keep your hopes up.
Posted 8/24/2014 2:48 PM (GMT 0)
Quincy: I've gotten my 2nd Lupron shot (a few weeks ago) and started Casodex at approx the same time. We are expecting+hoping my October PSA score to drop significantly. However I'm not quite sure what to expect but I'm thinking a PSA < 4 would be good and < 1 even better.
Posted 8/24/2014 2:51 PM (GMT 0)
I agree, I amended my last post to you to show you my drop from 511 to 2.7 in one month on Lupron and Casodex. Hopefully, the added bicalumitide will do the trick for you. PC is a lot of waiting so grin and bear it. I'm wishing you hit a <1 . . . Q
Posted 8/24/2014 4:54 PM (GMT 0)
Mark,

Welcome to the forum. Sorry you need to be here but glad you found us.

And, welcome to the Gleason 9 club.

Having gotten the formalities out of the way, I will convert the Gleason 9 Club to a metaphor and spend a moment or two pummeling you about the head and shoulders with it.

You really need to get yourself a medical oncologist, preferably one who treats lots of prostate cancer patients, and think about a more aggressive plan. You have stated one form of the conventional wisdom -- treatments don't work forever so you should take things one step at a time and only add a new treatment when it is clear that the old one is failing -- but some of the recent research suggests that such thinking is sometimes unwise. Sometimes treatments work better, and longer, if you push the tempo a bit. I'm not saying you should push the tempo -- I'm not and expert -- but you need a doctor who can help you explore the options.

Your uroligist is doing a fine job so far. But a young Gleason 9 guy like you needs different kinds of experts on his team if he is going to beat the beast.
Posted 8/24/2014 5:14 PM (GMT 0)
MarkO,
Peter D is right as rain, you should consult an MO. I was wondering why you hadn't been started on Casodex earlier but I must have missed that you were only seeing a Uro. and a GPM in your posts. It's all good but the patient does have to be his own advocate in these days of over specialization. In your case the more specialists the better. Age is a factor, I was 52 at Dx, so a little push might help as Peter put it.
Posted 8/24/2014 5:32 PM (GMT 0)
PeterDisAbelard:

Ahh gee thanks. (sort of)

I suppose if I had endless resources I'd be at a clinic in FL right now that uses beam, implants and chemo (along with other methods) and has a fairly good "cure rate".

The realities are that we all need to live within the "health system" that we've bought into at least until such points (usually yearly) we can change and buy into something else.

While there are indeed newer ways of thinking and methods becoming available all the time there are health system, location, time, diagnostic (and co$t) factors which limit the availability (and sometimes usefulness) of both.

I'm sorry to say that I find comments such as yours frustrating on many levels.
Posted 8/24/2014 8:13 PM (GMT 0)
I had an extremely painful biopsy that I will never (unfortunately) forget. And I also woke up from sedation during my only colonoscopy.
Posted 8/24/2014 8:43 PM (GMT 0)
wedge60: Sorry to hear that.

While I did not wake up during my one and only colonoscopy I've had a number of health care professionals tell me that my nerve structure falls into a rare 1-2% pattern. (how special eh? LOL!)

I've had my nose broken more than once and I'd rather do THAT again then have another needle biopsy of my prostate!

I've started taking B12+B-Complex supplements and they have restored a bit of energy. I have to be careful with "energy" type drinks and coffee afternoon.
Posted 8/24/2014 10:16 PM (GMT 0)

Mark0 said...
PeterDisAbelard:

Ahh gee thanks. (sort of)

I suppose if I had endless resources I'd be at a clinic in FL right now that uses beam, implants and chemo (along with other methods) and has a fairly good "cure rate".

The realities are that we all need to live within the "health system" that we've bought into at least until such points (usually yearly) we can change and buy into something else.

While there are indeed newer ways of thinking and methods becoming available all the time there are health system, location, time, diagnostic (and co$t) factors which limit the availability (and sometimes usefulness) of both.

I'm sorry to say that I find comments such as yours frustrating on many levels.

I don't believe Mark that Peter is somehow assuming that you have endless resources available. There have been people on this site with no insurance at all that have found inventive, out of the box ways to deal with the disease. I do not live in the US and therefore have little understanding of your insurance systems but people seem to be able to challenge their providers and see the types of doctors they need to see. Perhaps if you open a thread on how people have done this they may be able to help you.

Regards,
An
Posted 8/24/2014 10:16 PM (GMT 0)
Wedge, did you make a poo mess when that happened? I sure feel sorry for the orderly that got the assignment to clean up my exam room from what the nurse told my wife, Yuck. They marked my chart: under propofol only as that worked the second time. I don't fee like it was my fault though. I told the nurse that administered the fentanyl and Ativan that I've been on fentanyl and Fentora for 5 years and I have a tolerance to it. She just poo -pooed me so I guess I got her back, lol.

Marko, I was in what I take to be your situation at time of Dx . . . Limited funds and resources. I have to tell you that when people write here about traveling all over the country for second opinions and treatment I get a little hot under the collar as my wife and I live off of our SSDI benefits., less than $2,000 a month. That's like 250% under the poverty line for a family of two. It's hard for us to travel the 2.5 hour round trip to my cancer center let alone go to Johns Hopkins. . . . Q
Posted 8/24/2014 11:49 PM (GMT 0)
Mark,

I try not to recommend things that are logistical impossibilities. A medical oncologist is a fairly common kind of doctor. When I suggested you look "a medical oncologist, preferably one who treats lots of prostate cancer patients" I carefully said "lots of prostate cancer patients," rather than "exclusively prostate cancer patients," because there are many experienced oncologists but those who treat only prostate cancer are quite rare.

You said that when your first round of ADT starts to fail you will be "referred to Oncology." All I was suggesting was that you agitate for a referral now so you can run the plan that you and your urologist have made past a medical oncologist to make sure you haven't missed something obvious.

If you tell us where you live (nearest big city) and any special limitations your insurance imposes on who you can see, maybe we can help.
Posted 8/25/2014 12:22 AM (GMT 0)
MarkO (and Peter), at Vanderbilt I encountered the same mindset among my docs. At diagnosis, my UO and I agreed radiotherapy would be a good choice. Meeting with the RO for a long time, we set up that plan though the ADT was (and is) still conducted by the UO's office. With that in place, I wanted to have the MO involved and see if that would be the lead office after RT was done.

The MO, who was their "go to" for prostate cancer, saw herself as only involved when primary treatment has failed. I initiated the meeting with her in large part due to some folks here encouraging me to do so. She did not want to "quarterback" for my team, but was very patient and we talked a long time about my plans. It was definitely worth doing. As a result I have a relationship that lets me ask other questions, such as risk/benefits for preventive treatments for gynecomastia, things like that. She says in a positive and joking way that she hopes she never sees me again! (since only involved after primary treatment fails).

My PPO lets me see specialists for just the standard specialist copay, and they don't require coordination or preapproval through a primary care provider (PCP).
Posted 8/25/2014 1:08 AM (GMT 0)
Forgive me MrModerator but I was not looking or asking for any doctor advice or suggestions.

The people that are currently caring for me are by all accounts doing a fine job and if/when I feel that they are not I'll fire them and hire some other folks.

I did have some questions further up the thread that other forum members were kind enough to offer their own experiences and insights on. (and remain on topic)
Posted 8/25/2014 3:03 AM (GMT 0)

quincy17 said...
Wedge, did you make a poo mess when that happened? I sure feel sorry for the orderly that got the assignment to clean up my exam room from what the nurse told my wife, Yuck. They marked my chart: under propofol only as that worked the second time. I don't fee like it was my fault though. I told the nurse that administered the fentanyl and Ativan that I've been on fentanyl and Fentora for 5 years and I have a tolerance to it. She just poo -pooed me so I guess I got her back, lol.

. . . Q

Fentanyl and ativan can not touch Propofol even used alone, speaking as someone who made a living administering all of them. Unless you give enough fentanyl to cause respiratory arrest. But if they would not listen to you about having been on fentanyl for years, then they got what they deserved. You can build a tolerance that can multiply your dosage needs many times. Even an alcoholic can laugh off a standard anesthesia dose.

But even if you were wide awake and hollering, there should not have been any mess if they did an adequate job of getting you cleaned out before hand. There should not have been anything left to come out by the time they started working on you. Sounds like they failed to get that done.

However, for those of you with the horrible biopsy experiences: it should have been a local anesthetic or nerve block, with or without(in my case) sedation. If the block was skillfully done, you should have had a mild discomfort when the lidocaine was injected, not unlike with a dentist. If a good block was obtained, then you should have had only, again, a mild discomfort with each biopsy needle stick. Although, the noise of the snap of the biopsy instrument can run anxiety up and increase pain perception.

But sadly, administering a local or nerve block can is a separate skill that not every one is well trained in, and/or there can be an element of luck. I was lucky, and got a good block, and the block itself was not too painful. After the 1st snap only gave me a very mild sting, I knew I would be OK. I'm sorry to hear some are not getting good blocks. But, I'm not saying that biopsy was any fun, it sucked allright! A lot of it was mental agony. To bad we can't all get us an epidural!Or to heck with that, just a good old general! Actually, I could have got a general if I insisted and would have had to be admitted to short stay hospital rather than being done in his office.
Posted 8/25/2014 3:17 AM (GMT 0)
Sorry I offered advice if it offends you, Mark. I'll try not to offer any more.

Have a nice life.
Posted 8/25/2014 10:42 AM (GMT 0)
Marko,

From a fellow G9'ner -- this is LIFE, make the most of it.

.
Posted 8/25/2014 12:57 PM (GMT 0)
Quincy17--no poo mess, just pain. I also compare it to some dental work I had when the Novacaine didn't work and my former dentist insisted that I couldn't be feeling anything.

Peace.
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