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Do False-Stable results exist? My latest tests

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

I would like to inform about my tests of December. The PSA come as 1.28 ng/ml and the Testosterone at 278 ng/dL. In contrast with the previous, the PSA did practically not increase (+0.04) but the Testosterone decreased significantly (-078) and I do not know if the treatment for my case of shingles did affect these results, providing false-stable outcome. I took antiviral medication during two weeks ending on Nov 30, which is 20 days till I drawn blood for the tests. I do not think that the slow increase of the PSA is also due to a lower Testosterone because the level is well above castration.

In any case, the PSA is still far from the level of 2.0 that I am looking for to trigger a C11 CT/PET scan (my next step before restarting HT). In my previous threads I commented that I calculated to get such levels by December 2014 but that did not occur. Should I be happy?
It is worrisome and I am always imagining the numbers to explode in each new test. So far so good. Who knows if I manage the five years on vacations till starting the next cycle on HT drugs!

The results since May are as follows:

May 2014; PSA=1.20 ; T=341
Sep 2014; PSA=1.24 ; T=356
Dec 2014; PSA=1.28 ; T=278

According to the Chinese astrology the year 2015 will be a period dedicated to honesty and harmony. The animal that represents these qualities is the Ram (or Sheep), 2015 sign, which according to their characteristics or qualities, provide a tendency to see the good side of things, when crisis set in. I will try to recall this advice at the time I see the sharp climbing of my PSA.

Best wishes for a New Year to all my comrades and their families.

VGama    SealedSmileKiss Cool 

My previous results are listed in these threads;
http://csn.cancer.org/node/215330
http://csn.cancer.org/node/253261
http://csn.cancer.org/node/268900#comment-1449575

Shingles are gone but I still have sort of neuropathy pain.
http://csn.cancer.org/node/289557

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I have a long history of high cholesterol which I believe to be genetic, not dietary, because the quality of my diet is very low in any form of fat and I also exercise -- lifting and cardio -- actively 3-5x's a week.

I was a long time user of simvastatin which kept my cholesterol in check for many years but my current PCP switched me to atorvastatin a couple of years ago, which reduced my "bad" cholesterol and improved my "good" cholesterol levels noticeably even further.  So, at least in my case, atorvastatin seemed to be more effective than simvastatin. 

Just recently had a complete blood array done and there were no red flags -- everything w/in expected levels -- including liver and kidney function.  I've also not noticed any negative side effects from taking either medication.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

With no apparent justification my cancer decided to hibernate. This week's PSA test returned to 1.47 ng/ml, lower than the previous of Sep 2016 (PSA=1.56) indicating a complete plateau since March of 2015. My uro has no idea for the fact and I wonder what is going on. Testosterone has fluctuated alot since Sep of 2014. This time it is 262 ng/dL, lower than the previous of 364. This variation could have some influence on the PSA level but the values are still indicative of a sort of hibernation by the bandit.

My vacations away from hormonal drugs continue, however, I am now trying to regulate the creatinine levels which increased to 1.65 ng/dL. As commented before, this marker may be problematic for my expected PET exam. I am scheduled for a CT scan this week to verify any kidney mal function. All markers have increased above normal and I have no clue for the causes. Have I diabetes? Is there any problem with the liver?
I hope to sort out the facts the soonest.

Best to all,

VGama

Old Salt
Posts: 720
Joined: Aug 2014

Whatever the reason, your recent PSA test result should be comforting.

I hope that the other tests (creatinine etc) won't raise any alarms.

Will Doran
Posts: 207
Joined: Sep 2015

VGama,

Glad your PSA has settled in.  That's what my doctors are hoping will happen to me.  If so then I can hope to not have to go back on HT either drugs or Orchiectomy.  They said my Testosterone could come up and then go back down a little and settle in. That was because I had been on Lupron for 2 years.   

If I may ask---Do you have pain in your testicles from time to time?  I do and I have been told that is the hormones changing.  There are times that I can barely touch myself. The pain comes and goes.  Some days it's really uncomfortable.

As to the Creatinine levels,  My last test showed a level of 0.98, which is the correct range.  I guess I really don't know anything about those numbers, but I do know that my Doctors check that every time they do blood tests.  My level has always been in the proper range, so We don't talk about that much.  In my last blood work, I showed my Serum / Plasma Urea Nitrogen/creatinine mass/volumn to be 24 with normal being 7 - 18, and my mass ratio for the same being 24.9 with normal being 10 - 20.  So, those are up a little.  I guess I'll have to see what that means.  I'm going to look at my tests from last year to see where those levels were. 

Went back and looked at my levels from the last two years on my medical potal through the hospital.  The serum plasma urea nitrogen mass volumn was 17, then 21.2 and is now 24. The mass ratio was 22.4 and is now 24.9.  So, not sure what that means.  Do you know?  I guess I will find out when I get to my rescheduled appointment on Jan 27.

Good Luck

Love, Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Please read my new thread on the above subject.

https://csn.cancer.org/node/307433

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

For those interested or following my story, I want to inform that I am now celebrating my fifth year on vacation from the HT drugs. I am glad for successfully being able of reaching this mile stone in such long period free from the side effects, but not all was like a smooth walk in the park. I was not free from anxious moments at each time I did the PSA or experienced suspicious symptoms. In fact I am wary of the results with sharp increases and decreases since Dec 2014, when I started this thread.

The last PSA was again lower than the previous, returning to the levels of 2016. The histology goes as follows;

Dec 2014; PSA=1.28 ; T=278
Mar 2015; PSA=1.49 ;
Jun 2015; PSA=1.30 ;
Aug 2015; PSA=1.48 ; T=252
Nov 2015; PSA=1.46 ;
Feb 2016; PSA=1.41 ; T=181
May 2016; PSA=1.59 ;
Sep 2016; PSA=1.56 ; T=364
Jan 2017; PSA=1.47 ; T=262
Apr 2017; PSA=1.81 ; T=377
Jul 2017; PSA=1.57 ;

Apart of the PSA there is no other fact that could deny or imply other than a sort of indolence by part of the cancer, I only worry if these results relate to a false pretention that the cancer is not spreading in its advancement. My doctor has no idea of what is occurring but recommends to restart HT as soon as the PSA gets to 2.0 ng/ml. In our last meeting in the beginning of this month he gave the referrals for a PET scan with F18 Flurocholine (discussed in above posts) and scheduled my next appointment to September. This exam is covered by the national health services (NHS). The 68Ga PSMA PET clinical trial in which I was enrolled is no more available but I also could not do it due to the limitations in renal insufficiency (high creatinine levels) imposed by the CT image that makes part of the trial's protocol. I will try still to do it at my own charge if I manage to get a referral letter from another doctor. In any case, the 18F (FCH) PET may be sufficient for my purposes. The only worry is if a PSA of 1.5 can assure a positive result. I am not interested in another false negative.

According to the doctor the F18 substance is not Nephrotoxic so that I have not to worry with my CKD case. The only minus is that the CT image that complements the exam cannot use the iodine based contrast. Our good friend survivor Denistd has suggested the same in one of his posts.

Best wishes to all,

VG

Old Salt
Posts: 720
Joined: Aug 2014

Time for some celebration...

desperate for hope
Posts: 44
Joined: Oct 2016

I wonder, when the primary has been treated, if PSA can fluctuate with diet and activity in the same was as it does for men on active surveillance. 

I don't mean to scare you but here's an article about low PSAs and met. PCa. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873892/

What was your initial Gleason?

ramaka
Posts: 55
Joined: Mar 2017

Very happy for you and your family, VG! Thanks for ALL the help and wishing you only the best!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3225
Joined: May 2012

Lower PSA is always better.  You have the best doctors, who will figure your pattern out.

Blessings,

max

Grinder
Posts: 437
Joined: Mar 2017

Speaking as one of the New Kids On The Block, I have been reading the archives, now back to 2012, and I want to express gratitude to the long timers for continuing to post all these years so new guys to this experience can find solace and much needed information for just about every jot and tittle there is to know about PC. Why watch fakey tv medical shows when there is stark and honest reality, sometimes sad, sometimes encouraging, sometimes tragic, sometimes finding light in the darkest places. 

We do need more humor though. You guys need to step it up in the comedy dept. How come there's no comedians in this forum? Is there a correlation between wisecracking and PC resistance? If so, maybe we should break out a few one liners about prostates. Jokes about BPH and my prostate... it's the next big thing.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Thanks for the kind words. I would like to hear from guys at the comedy dept too. I think that those reading but later decide not to participate for the seriousness we imply in our posts. We from time to time share little bits of funny conversations but not that often.

A note to desperate for hope's inquire; My initial Gleason score was (2+3) 6. That was confirmed 17 years ago at my surgery, however, I do not know which Gleason rate is the bandit made of today. It could still be the rate 3 but it could be a different one that may have existed but was not reported at the biopsy. Your link regards a scare case of metastasis. I am aware of that possibility too. I hope the PET exam provides a clue about the bandit's hideaways. Nevertheless, the capability of choline PET scans seem to be low for the detection of small metastases, in particular in a case of micrometastases (I was diagnosed with such well back in 2001 and never got a positive image along these years).

Thanks to all,

VG  

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

VG, Did I read that right? It's been over five years since your last Lupron Injection or other form of initial HT and your PSAs have held steady under 2.00? And you have not been using any other form of PCa treatment except regular blood draws for PSA checking? That's a really interesting strategy because I thought the standard treatment was to continue getting injections until they were no longer effective and then switching to another line of defense. This certainly would extend the clock for the effectiveness of initial HT. Any ideas on why more Medical Oncologists don't do this? In a separate post of yours, I read an exchange with an old friend who was in his 80s and had been using this very same strategy since his RP in his mid-50s. I wanted to copy that to discuss with my Oncologist on my next visit but can't seem to find it. I can certainly see the benefits to trying this. So far, I've had two Lupron Injections and they've worked perfectly - my PSAs are in the undetectable range and my testosterone levels are way down too. I know that the PCa will eventually mutate and figure out a way to work around the Lupron (start making it's own testosterone) but if there's a way to extend that timeline, I certainly want to explore it. I'm delighted to see that things are going well for you. Best/Gene

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Gene,

You are reading it correctly. I am enjoying a long period away from the drugs, free of their risks and side effects, and giving an opportunity for my androgens dependent systems to recuperate to their normalcy. In short words, it is like giving me a chance to become healthier but at the same time I am also providing the bandit to get its testo-cocktails parties. This is the principle and purposes of the intermittent modality: a temporary return to normalcy while faking the cancer into believing that its survival is not threatened. Surely refractory (mutations of cancer biostructure) can be expected to occur much latter. This extension in living with quality also provide systemic patients with precious time that may bring to them the benefits from newer researches (on the drawing boards) on systemic treatments for PCa.

Xofigo and Zytiga are two examples of drugs that become effective members in the protocol of PCa therapies worldwide when I just started my IADT (intermittent androgen deprivation therapy) back in 2010. Today I got better modalities for imaging, more precision ways for identifying aggressive forms of the bandit (genetic testing) and an understanding on possible failure of certain prescribed drugs to my case (individual tailored treatment), and, most importantly, the so called radiopharmaceuticals therapies (the evolution into future ways for treating cancer) already effectively on course in certain places. Nothing of these was readily available at the time I started to discuss with my doctor after failed salvage RT of 2006.

Intermittent ways for treatment may not work in all cases. There have been trials trying to verify the benefits of intermittent vz continuous, which reports saw intermittent not better than continuous. However, I believe that the data from those trials were corrupted because the standards use to regulate the periods (on and off) drugs were fixed equally to a number of months to all patients, independently from the status each one were once this cohort stop taking the drugs. Many guys never got to castration levels and many never got to periods of remission. Nevertheless, the researchers use the PSA to identify failure and comment on the trial's final conclusions. Surely a guy taking a drug but that never got into castration should expect no influence on his PSA. Also guys that got into castration but saw their PSA fast increasing should understand that refractory was occurring and that the modality of therapy was never influencing his result in the trial. Testosterone tests were not used to verify the above in the trial. PSA remission levels were also not used to limit the use of the drugs.

My intermittent modality follow the standards used by several famous oncologists like Myers, Scholz, Strum, Bob, Lam, etc, with strictly regulated on/off periods in the intermittent. You can read my posts explaining details, however, the on-period requires one year into PSA remission of less than 0.05 ng/ml (Myers prefer levels of <0.01 ng/ml) while the castration is lower than T<20 ng/dL. The off-period starts when a patient gets the above status and ends when the PSA gets to a certain level determined by the oncologist that can be different in each case. Mine (a micrometastases case with failed RP and RT) was set for a PSA=2.5 ng/ml. Some guys Gleason 7 and 9 with failed RT got a trigger threshold at PSA=5.0 ng/ml and guys without radical treatments got still higher triggers at PSA=10.0 ng/ml but they use tactics for further control to try extending the off-period (ex; taking drugs to avoid Angiogenesis). All of these follow the principle of one year on remission. The restart of the HT treatment also may involve different drugs and one may get additional blockades (move from IADT1 to IADT 2 or 3 +α).

Thanks for the curiosity. I have deeply researched into this therapy since 2001. The post you commented may refer to  Henryb's story (another IADT patient) in this link;

https://csn.cancer.org/comment/1574637#comment-1574637

Best wishes.

VG

GeneRose1's picture
GeneRose1
Posts: 64
Joined: Aug 2016

Vasco, This is a remarkable report on your success with Intermittent ADT (IADT) and a blueprint for how I want to modify my treatment. Right now my PSAs reveal that my PCa is undetectable and that my T score is well below castrate level. I don't see any reason why I can't give this a try. So far, I've had two Lupron Injections, in February and May of this year, and they've worked perfectly. I have two more injections scheduled for this year, in August and November, and will discuss with my medical oncologist that we start intermittent ADT in January of next year. Before I start, I want a new round of tests, PET Scan and whole body CT, to compare with my January 2017 Tests. That's my plan going into my next meeting with my Oncologist and I have you to thank for helping me navigate to this point. How did you arrive at identifying a PSA of 2.5 as the trigger for restarting ADT? Did you base that off your research of the clinical trials or was this your personal comfort level with the risk? I don't know how everyone else see's this, but I think it took a lot of guts, on your part, to do this and possibly show the rest of us a better set of tactics . BTW, I view Henryb's report as the Holy Grail of IADT and have already sent it, along with your report, to my Oncologist. I hope everyone in the initial stages of PCa is following along on this.

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