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My latest, PSA, the rocket still is climbing away

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Posted 12/14/2011 10:03 PM (GMT 0)
IGNORE Mel's remark, don't be mis-led.

No POM, no vitamins, no supplements, no dietary changes. Period.
Posted 12/15/2011 12:12 AM (GMT 0)
Bet Mel forgot to let us know it was a joke?
Posted 12/15/2011 12:16 AM (GMT 0)
David,

I don't blog on the very often just mostly lurk and read, but I just needed to tell you I hope the best for you!! Youv'e been throught way more than anyone need to experince in their life time!! Just know your in my prayers as are all the men including my husband fighting the ugly cancer!! Happy holidays to you and your family!

Melissa
Posted 12/15/2011 12:34 AM (GMT 0)
Thank you for your kindness, Melissa. Hope your husband continues to do well.
Posted 12/15/2011 12:36 AM (GMT 0)
We send only good vibes to you and relaxing holidays with no thoughts of psa past, present or future.

Our best to and the rest of the gang,
Jake
Posted 12/15/2011 6:12 AM (GMT 0)
thanks jakester, have a good one as well.
Posted 12/15/2011 7:16 AM (GMT 0)
Not good news. I worry about you, but feeling sorry gets none of us anywhere.
The interesting comment you made was: "How about that for a Gleason 3+4" (or words to that effect.) I know it would be a bit like examining the hinges after the horse had bolted, but could your docs learn anything by re-examining your post-op pathology to see if they missed something, such as some Gleason 5. We hear a lot here about getting second opinions on biopsy slides, but never much, if anything, about getting post-op pathology reviewed.
Otherwise enjoy the holidays and no getting drunk and doing "tricks" with your external plumbing.

Alf
Posted 12/15/2011 9:10 AM (GMT 0)
David,
Glad you're keeping that number on the shelf for the holidays. I wish I had your courage.
We head back to MD Anderson on January 4th... so we can compare notes afterwards.
Will be keeping you in thoughts and prayers...

I mostly lurk these days, but I had to sign in to acknowledge your post.
Posted 12/15/2011 11:15 AM (GMT 0)

David,

You've had an incredibly rough ride. You're often in my thoughts. I know where you're at with respect to HT. I too chose to play the waiting game with full support from my physicians.  After failed surgery, SRT and clinical trial my PSA was slowly rising but still under 3. Suddenly something lit a fire under the cancer and with the PSA at about 5.0 I woke up with symptomatic bone mets. I have commenced triple blockade ADT3. I don't know that this will benefit my long term survival but my primary interest right now is what's on today's table. I respect your opinion on the limited value of supplements, diet and exercise but quite frankly these components seem to have made the HT experience very tolerable for me. My symptoms have diminished, my PSA has plummeted and I notice few side effects. My disease is very aggressive and I may become refractory sooner than later. I will then attempt second line HT, clinical trials or whatever as I carefully monitor the promising new developements in the pipeline. I have no plans to die from PCa without staging a monumental fight. I'm not trying to second guess your decisions about HT. You're a seasoned and educated veteran in this room and we all value your presence. My only advice is don't drop your guard or turn your back on this gangster disease. It will take advantage of any lapse. My heart is with you and your family. Have an incredible holiday.

Jim

   

Posted 12/15/2011 11:54 AM (GMT 0)
This is crazy David and you are right it sure makes you rethink traditional wisdom on PCA. You being a Gleason 7 would not expect such things to happen like this however we seem to be seeing more cases like this. Lets just say 2012 is going to be your year of healing. It is spoken and it shall be.
peace and love to you my friend
Dale
Posted 12/15/2011 2:08 PM (GMT 0)
Again the Twighlight Zone.......David, you were a 3+4 at pathology several years ago.   Somewhere, there were PCa cells doing their thing, mutating, growing, spreading.....that were undetected and not destroyed by the treatments.   Who knows what G they are now?   Can it even be determined?   I reckon the only way to find out is if something shows in a lymph node and they biopsy it.    I have never heard of biopsies from bone material when detected.

My fear with this stuff is that if it continues to mutate it may actually give off less PSA relative to the mass and be more serious than the PSA indicates.   Not throwing a negative, just my concern over the unknown aspects of this stuff.

I have great respect for you and your decisions and am not trying to second guess them.   In a way we are each a treatment trial as we all report our own experiences and we try to learn from each other and apply others' experiences to our own decision making.   Apart from appreciating you greatly as a brother in all of this, I am also learning from your experience as I fully expect to be facing a progression at some unknown point in the future.

Best wishes and Merry Christmas and please teach us all how to achieve the calm confidence that you demonstrate,

Jack.  

Posted 12/15/2011 5:45 PM (GMT 0)
David and Jack:

I know there is something called CTC (Circulating Tumor Cells). They can get a number via a blood test. I'm not sure how useful it is and I don't think you can get a revised GS from this test, but maybe?

The deeper question is: what good would that do at this point?

The PSA is an excellent marker to track the progress of the cancer (except where the cancer gives off very little PSA), and then you have assorted scans.

David -- you probably need to get those scans forthwith. Is there a reason you are choosing the PET Scans? Are they supposed to be better or more accurate than regular scans? Is the radiation less (or are the SE less)?

I'm curious because in the last 3 weeks I've had a bone density test (the QCT one), and CT scan, and whole body bone scan. Having had a somewhat unpleasant time with the SRT, I am not pleased to have gotten more radiation, but I know it was necessary.

I'm just checking in here now quickly. My appointment with a local medical oncologist is in 45 minutes and I'm sure he will have all of those results. I am not looking forward to that -- lots of trepidation. I admire your tranquility in these choppy waters!

Mel

Posted 12/15/2011 6:09 PM (GMT 0)
CTC by CellSearch is a possible test to run to see if tumor cells are circulating. The primary reason to use CTC today is for prognosis purposes. CTC cannot change Gleason Scores but it can identify progression and disease reaction to treatment.

CTC is not available everywhere. Primarily the larger centers will have this tool available.

We had an extensive presentation on CTC in October. Interesting stuff.

Tony
Posted 12/15/2011 6:12 PM (GMT 0)
Mel,

My oncologist doesn't feel it wouild be productive to re-hash biopsy or pathology slides at this point, he said it wouldn't change where I am at, or give him any other possible treatment options. He doesn't feel that MRI's are the best tool to spot early Mets, he feels that whatever type of PET scan he had ordered, would be a more accurate tool. Still don't know what the hangup is, but doesn't really matter, as I see him on January the 4th.

Good luck as you are about to get your test results, highly improbable that there is any mets evidence in your situation at this point.

------------------------------
Jack,

I have had that same concern as you about the amount of PSA that is being produced. What amazes me in my case, is that I now have a higher PSA than I did at diagnosis. 14.0 vs. 12.3. And I no longer have a prostate and took in 72 gys of radiation since then. The going theory is that there are multiple micro mets, that collectively, are building up the PSA to the current level. At some point, these micro tumors will be big enough to detect, and there's no telling where they will show up in my body. If I had to choose bone or organs, I would choose bone mets, as at least there are ways to deal with them, i.e. spot radiation, etc. I wish you the very best in your battle. There's a handful of here at HW that just aren't getting any slack in the HW war, that's for sure.

david
Posted 12/15/2011 6:17 PM (GMT 0)

Hi David,

I'm not on the site as often as I used to be, but just read your latest post and I am, like everyone else here, very disappointed that your last visit with your medical team did not have the positive result that everyone here expected and hoped for. I wish I had something useful or helpful to suggest, but you know your own situation better than anyone and you are educated and knowledgeable enough to draw your own conclusions and make your own decisions.

Just would like you to know that you are in my thoughts and that I fully agree with all and any decisions you make down the road.

Wishing you and yours the very best for the holiday season as the circumstances allow.

Your friend,

Mag

Posted 12/15/2011 6:22 PM (GMT 0)
David - I add my thoughts to those expressed above. It is very interesting to see the difference in protocol as one approaches the HT decision. I have a PSADT of under 3 months and my treatment plan anticipates the first round of HT at around 5.00. I have not heard the concern that a fast PSADT is indicative to the lenght of time before HT fails. My next test is next week I'm happy with anything under 1.25
Posted 12/15/2011 7:31 PM (GMT 0)
mag, my friend, appreciate your remarks. i will soldier on, for sure. may you and yours have the best of holidays as well

keeping faith, where does your oncologist draw a line with the number? my guy, doesn't base a HT decision on any particular number, he looks at the whole patient, and tried to keep the QOL factor in it as long as possible. From what I have been told and have learned, HT will do the same thing, whether you hit it at 2, or 5, or 10, or 20....as long as there aren't any detectable mets. so the trick, from where i sit, is to see how far i can safely approach that point, withiout needing to be on HT or chemo. it works for me. doc said there are guys, with BCR, who get to the 50-100 range, have no evidence of mets, and feel healthy - so why would they want to go through HT, and risk an early refactory situation when its really not needed? i think that's an interesting way of looking at it. if i absolutely insisted on HT now, he would do it, but it would be against his advice. i am trusting my doctor's experience level with BCR cases, so i am taking his advice. i have enough woes from previous treatments to last my lifetime as it is. good luck to you, seriously.

david
Posted 12/15/2011 11:16 PM (GMT 0)
David I know you have had a heck of a journey, with your surgery, radiation, catheter, if anyone deserves some good news it is you. All I can say is what everyone has conveyed. I wish you a MUCH better year in 2012. I pray they best for you.

Ron
Posted 12/15/2011 11:23 PM (GMT 0)
thank you, ron. my best to you and your family as well

david
Posted 12/16/2011 12:38 AM (GMT 0)
David, things remain the same for Ron with one exception.  He has arthritis in his knee and needed a cortizone shot, but that is normal aging.  He has given some thought to going to the Cleveland Clinic for his testicle pain.  After 6 months of the needle pain procedures, he has given up.  However, we both are in a positive spirit and believe pain will one day be gone from his life!

Lets just say 2012 is going to be your year of healing. It is spoken and it shall be.

 

This sounds like great thoughts for you!  Again, wishing you the very best during the holidays and hope you have some special sharing time with the Grandchildren!

 


Posted 12/16/2011 2:08 AM (GMT 0)
aimzee, i wish it were that easy, lol, but all we can do is hope, for a better and pain free year ahead.

david
Posted 12/16/2011 2:35 AM (GMT 0)
Hi, David. I don't check in as much as I used to, but saw the thread and had to respond. I think you need to write a book about your journey as not many guys have had the carp stacked on them like you. I think the decision to wait the 6 mos. would be good, if nothing else, but to take the a break from all the testing and just kinda flip your middle finger at the disease.

Hoping you have a pleasant and relaxing Christmas and a heckuva better new year.

Bob
Posted 12/16/2011 3:03 AM (GMT 0)
I have no plans to die from PCa without staging a monumental fight.

Jim -- that phrase really moves me.  very inspirational.  i'm going to hawaii in a few days and i feel terrific....and a little guilty.  don't know where that comes from or if it makes any sense to anyone but that's how i feel.

ed

 

Posted 12/16/2011 3:05 AM (GMT 0)
bob, i flipped my finger a long time ago with my PC, it will do what it will do, and I will live as I can

david
Posted 12/16/2011 4:25 AM (GMT 0)
Dave,

Doing my occasional check in, and sorry to hear your news. Everyone else has said what there is to be said. I hope you're able to enjoy the holidays, and eat the holiday meals that you enjoy.

DJ
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