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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

 

tarhoosier
Posts: 195
Joined: Aug 2006

VdaG:

That is the very best news possible, I believe. There is essentially no change in psa. If one did not know you had years of treatment it would seem that your psa is "normal". Immune system changes can affect tumor growth but that is not what happened here, unless it was counteracted by other factors.  Wine, hope and good feelings for the next of many years!

 

JohnC

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

For those who have been following my story, I want to inform that the PSA test of this month increased to 1.49 ng/ml. I think this to be more realistic than the previous result of December (1.28) because it comes from an unstained blood sample “clean” of drugs influence, which also excludes 3 months of daily Sinvastatine(s), stopped last December. Statins are known to influence and mask the PSA result.

The increase is not much but an exponential growth calculation indicates a value of 2.0 occurring by August 2015, and probably reaching the 2.5 threshold sometime within this year. I have missed in past calculations, however, I think that the PSA shows cancer growth (not indolence) so that sometime this year I will try having that state-of-art image exam (C11 choline or F18 choline), and then restart the hormonal treatment (IADT).

This accomplishment represents almost 4 years of life without symptoms and the effects of the drugs. I am pleased with the outcome.

Best wishes to everyone in their fights.

VG

hopeful and opt...
Posts: 2218
Joined: Apr 2009

VG, you are  still on vacation, so enjoy.....I hope that you will continue with this vacation for quite a while more.    Best 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

I have started trying to memorize all of the Threshold numbers in post-treatment PSA, mostly form you yourself, V .  I get my first post-RP psa drawn next week, and am hoping of course for "Undectable."

Impressionistically, your changes do seem very slight.  Plus, the HTs work so efficiently for so many, many years, and have so many variant drugs that is seems you are in for smooth sailing for a long time to come, hopefully decades.

max

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

Guys,

Thank you for the gentile words.

In systemic cases like mine one has the disadvantage in finding a quick cure but got the advantage of modalities that prolong control over the years while newer technologies establish reliable bases in the “trade”. The way we analyse cancer and treatments today are much more “sophisticated” then what was set as standards back in 2000 (year of my diagnosis).
There is no silver bullet yet and the way to treat is still the “stone age” approach of cutting off the rotten flesh or “burn” it out for good. But these jobs can be done now with precision and lesser risks. Details on cancer behaviour are now known better too and the techniques to find it are wider and more precise. All of this provides better tools in the judgement of a case and in the decision to tackle it.

Thresholds are a set of tools important in sequential therapies. It serves also in the judgement of successes or recurrences. In Max case the traditional PSA=< 0.03 to 0.06 at the two weeks post RP is an important marker of success. In my case the trigger threshold to restart IADT is PSA=2.5 but the common PSA level in IADT is 5.0 to 10.0 ng/ml. This is accommodated when the patient has still the gland in place.

Many guys after failure just give up and try to enjoy life as it comes. Others like me try the sequential where thresholds are important in the management of a certain control. Extending life is important to avail of the advantages I spoken above.
Not to border you with matters of systemic cases (not yours) but to explain an example on the benefits in trying to postpone a treatment or extend control, I can describe about my case. As you know the aim is to check if my PCa case relates to oligometastases. The main job is to get a picture (positive) of the bandit’s location. I know via recent researches and trials that image studies with the choline contrast agent are more reliable than any other contrast agent for recurrence PCa cases. This was not available ten years ago but even now, within the past two years while on my HT vacations (IADT), more progress is seen since researchers identified and set that F18 choline is more practical in exams than the C11.

F18 (FCH) has a half life of 110 minutes whether C11 is 20 minutes requiring a cyclotron machine at the facilities doing the test, otherwise one would risk negative results (with “dead” choline). The F18 (FCH) can use two different substances; the Fluoroethylcholine or the Fluoromethylcholine, which provides higher possibilities in the procurement of the contrast agent. However, both fluors are easier to be lost during the exam due urinary excretion. In this matter C11 choline is a natural product and not easy of being excreted. ADT also interferes with cell's uptake of choline so that the exam must be done in a "clean" status.

These findings provide me the ways to choose the best reliable hospital/clinic where to get a reliable exam and consequently the best oligometastatic diagnosis. From there I can choose my future treatment or step.

Best.

VG

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

One comment in your post reminds me of a comment the actor Patrick Swazey made in an interview with Barbara Walters, shortly before he died of pancreatic cancer. She asked him about his treatments (which was a horrible chemo) and he said,

"Yea, we have 'medicine' -- cave man medicine, medicine that makes you crawl around on the bathroom floor all night."

He was frustrated, understandably . Things are better now in treatments, but we aint there yet.

CC52
Posts: 101
Joined: Nov 2013

SmileCool

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

Driving a stake in the heart of Psa. Is not to wait for prostate cancer to spread with 2.5 psa, but to be pro-active and keep your the numbers to .01or under <1 and getting the "T" number's down too. Your T number's look high and inviting for the cancer to eat. Even at psa of 2.0 in the eye's of MDACC was bad and that was the reason to start Zytiga 3 years ago. Staying ahead of my T and beating back psa, although a active life was not as great as it should been. Got my last number's sent starting Xtandi in December.

December 15 6.1psa at VA hospital

January 20 5.4psa at MDACCFebruary 20 4.7psa at VA hospital

March 20 5.2psa at VA hospital

T number's not detectable <40

AS always, VG stay Strong and Prospers

Ralph

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

Ralph

Thanks for the opinion and advice.

I think doctors at MDACC are right in keeping T low while controlling the progress with the PSA.
Systemic patients (the ones with failed radicals and salvages) should avoid all means of “whipping” the cancer into activity, “prohibiting” the “free” circulation of testosterone (used in frenzy cancer feeding parties), or should avoid stressful situations in life, or opting for diets and supplements that create environments not beneficial to the cancer. One must be careful with his life style.

However, hormonal treatments have shown to be better if administered intermittently. This on/off methodology allows the body to recuperate from the hypogonadism status with the benefit of a symptom less period and allowing other body systems (that use T) to return to normal functions. It also extends the period of effectiveness of the hormonal treatment (period on drugs) till one becomes refractory, and in need of changing protocols.

My treatment involves this intermittent modality. The thresholds regulating the switches on/off come from cancer activity in PSA terms, ON: PSA=2.5, Off: PSA<0.05 during 12 months. The Testosterone marker serves to certify the hypogonadism status. It also designates refractory status (failure of therapy) when one got increasing PSA in a low T environment. I think this theory has been applied to your case so that when the PSA increased to 7.6 at low levels of T (<40), indicating refractory, the doctor changed protocol from Zytiga to Xtandi.

Your last test has slightly increased (4.7 to 5.2) but nobody can yet judge this result as refractory of the newer drug. If the increase continues (for six months) you will have to stop Xtandi because cells started AR mutation (androgen receptors), and they may be feeding on the Xtandi itself.
This is a period when the bandit survival is not depend on the testosterone your testis may produce. It will feed on the antiandrogen you are supplying freely, and latter it will mutate again to start producing its own androgens. At that time your doctor may suggest again that you restart Zytiga or take as a substitute the old drug Ketoconazole plus prednisone. These second-line HT drugs prohibit cancer to “make” androgens from cholesterol.
When all fails, one may look for control possibilities within the chemo weaponry.

Important note to you: I would like to recommend you to discuss with your MDACC doctor about any possibility in taking Xtandi at the evenings before bed time. This may help you to sustain better the drug’s side effects. Just try it.

Best,

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

VG,

When I was taking Gary to the cancer center for his end-stage disease, the NP explained the "intermittant modality" of the HT drugs, almost exactly as you just did.  Sadly, as I have written here before, Gary was NOT a cooperative or "good" patient, -- too hot-headed, and would quit therapies in mid-stream, refusing to even call the doctors for extended periods, sometimes even months ! This undoubtedly reduced the effectiveness of his treatments dramatically.

Played correctly, what I have read and heard explained to me directly (regarding Gary) is that these therapies can, in many cases, work for many years. And, you are the master violinist; play it like Beethoven !

For those who do not know, "Gary" was a friend of mine who died a year ago last September, after a 13-year fight with PCa, which involved surgical removal, months of radiation, hormanal therapies, and finally all of the chemos. The timing or layout of all of this is too complicated to relate here, but I do recall that after surgery he went about five years before beginning radiation, which was his first salvage therapy. 

max

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

I received today a lower PSA value of 1.30 ng/ml. This is a return to the levels of December 2014 after the increase of 1.48 in March 2015. I do not understand the reason for this “seesaw” kind of results but the testosterone is also lower at 252 which could be affecting cancer activity (?).

May 2014; PSA=1.20 ; T=341
Sep 2014; PSA=1.24 ; T=356
Dec 2014; PSA=1.28 ; T=278
Mar 2015; PSA=1.49 ; T=?
Jun 2015; PSA=1.30 ; T=252

As I posted above, my plan is to have an exam (image study) before restarting the hormonal treatment (IADT) to verify any case of oligometastases and to such purposes I want to wait for an increase in the PSA (closer to 2.0) to avail of the best chance for a positive scan. Maybe I should celebrate today’s lower result because it is providing me a longer term off-drugs and therefore off the side effects.
Mean while the cancer is also enjoying the frenzy and that makes me anxious.

The physician looking upon my case has changed in April. I got a younger uro-oncologist who I meet in my last consultation. We discussed the oligometastases treatment concept in my case which he applauded. However he pointed out that in the presence of micrometastases, one should think that not all the metastases will show up in the “sophisticated” image study, because the many still in micro sizes will develop later. More or less it is what occurs in systemic cases.

I am set and signed to participate in a clinical trial for the newer exam named 68Ga-PSMA PET/MRI. This will compare results with the exam F18 (FCH) choline PET/CT, therefore I will take both. I have already discussed with the radiologist that is in charge of the trial at Coimbra University Hospital, so that we are ready only waiting for the increase of my PSA.

This trial is also in execution at the US National Institutes of Health. Please see this;
https://clinicaltrials.gov/ct2/show/NCT02282137?term=68+psma+pet%2Fct&rank=1

Here are several links regarding the exams, in case someone wants to know details;

http://www.ncbi.nlm.nih.gov/pubmed/24072344

http://www.ncbi.nlm.nih.gov/pubmed/25412869

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3311230/

http://www.ncbi.nlm.nih.gov/pubmed/24352789

http://www.researchgate.net/publication/244481682_PETMRI_with_a_68Ga-PSMA_ligand_for_the_detection_of_prostate_cancer

A friend (traveler) send me this article from Dr. Myers Journal in regards to differences between C11 choline and C11 acetate. The main difference seems to be the way our body metabolises the substances. C11 choline requires one to be clean from HT drugs for the test while C11 acetate doesn’t.

I recommend to my friend comrades in particular Hopeful to read the article that also discusses patients in AS;

https://gallery.mailchimp.com/c0d8ce0558462196cd0d62682/files/ProstateForumJune2015.pdf?utm_source=Rivanna+Health+Publications&utm_campaign=c2e53dfd98-Prostate_Forum_June_Attempt_26_2_2015&utm_medium=email&utm_term=0_bc8795358a-c2e53dfd98-149107997&ct=t(Prostate_Forum_June_Attempt_26_2_2015)&mc_cid=c2e53dfd98&mc_eid=10beaa2195

Best wishes,

VGama

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

I wish you the very best through this and find the science fascinating.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

The 68Ga-PSMA PET/MRI., so far has had great diagnostic success. Interesting that Coimbra  is doing the same study as the hospitals of the United States. I'm glad that you were able to enroll in this clinical study.......I wish you the best.

 

Thanks for the article. As you know I am involved in a study for MRI directed biopsies. After having several of them (that provide better results than random biopsies) , I feel secure in continuing the AS procedure that I am following. 

 

As always my thoughts are with you.

Old Salt
Posts: 720
Joined: Aug 2014

I do not think that your 'see saw' PSA results are significant. Rather, I just see statistical variation of the assay around an average (aka mean).

Your conclusion that the cancer is "enjoying a frenzy" is speculative, and in my opinion, erroneous. If so, your PSA would have risen significantly. Hence, you can relax.

PS: I spent many years in biological research and have done (too) many assays...

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

Thanks fellas for posting the comments. They are precious to me.

I would appreciate that Old Salt explains more about what he knows on the statistical variation of the assay.

The PSA is important in my case and the only means I have as a tool to control the advancement of the cancer, and therefore the tool for deciding my continuing treatment. I have done the PSA tests at the same laboratory with the same type of assay. I know about results' tolerances beeing in the bracket of +/- 0.05. Though, the up/down curve was closer to a value of 0.2

My expression of "Frenzy" is for an evening cocktail party served with testosterone. The little buggers all smiling and enjoying it.

Best

VG

JMS58
Posts: 22
Joined: Jun 2015

Hi Vasco,

I wish you all the best and I thank you for posting on my case.
I feel we are getting so much closer to winning this battle, but I say this as a new comer to PCa, and your long term survival from back what 14 years with many different treatments and procedures is amazing.    Your knowledge and fortitude shows.

What will be the game plan with the results of these new scans and will your new oncologist act on it?

 

 

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

I would love to tell you what I think about all of this, Vasco. Please accept this explanation and my apology. I don't understand it well enough to talk about it! In other words, you are dealing with matters that are above my comprehension and understanding.

Just kidding; trying to get a laugh and have a little fun. You are so very knowledgeable about PC and so willing to share and help the rest of us. Thank you.

Old-timer Jerry

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

Jerry: Thanks for the well wishes and the advices.

JMS: The game plan is to get rid of the bandit.

In my 15 years of survivorship I have seen newer processes and approaches in diagnosing PCa, in particular with regards to identified genes (the genome), better and more reliable facilities for image studies, newer techniques in the therapies that fight the bandit from several fronts at the same time, newer medications able in controlling cancer advancement from within its own cell, etc, etc.

My case after failed RP and SRT is considered systemic. This group of patients use palliative approaches as the only means of control. I started IADT in 2010, which has been very successful.
The treatment is done intermittently in on/off drugs periods, with the intent of faking the habits of the cancer while providing a period of live in a normalcy status (free of drug’s side effects).
The truth is that while on treatment I “discovered” the above oligometastatic concept which was used by several PCa patients with similar cases. This has been in use in breast cancer cases. The PCa patients have shown successful outcomes too. Moreover, radiation does not mask the PSA and my SRT in 2006 propelled the PSA down to 0.05 from a high in the 3.8 level, in 13 months. It caught the bandit but missed some spots. These are the ones still growing and enjoying the evening parties. I can control cancer’s obsession for the testosterone with intermittent supplies (now you have it, now you don’t) but if they get “fed up” with the practice they will mutate and start producing their own cocktail drinks, giving rise to refractory and, therefore, to the end of my treatment.

This is the prospect of my future so that I decided to give it a try to locate their hidings with sophisticated scans and if those spots are found at a fewer number then I hope to zzzziiiiippp them off for good.

Best wishes in your treatment.

VG  KissCool

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

(My RP experience)

This week it makes 15 years since my first attempt to free me from the bandit. My open prostatectomy was done in August 15 of 2000, 3 months after being diagnosed with PCa. I recall well that occasion. On the previous evening the surgeon, Dr. Komatsu, introduced to me and my wife his operating team composed of 5 specialists. He explained the details of the whole procedure, its risks, etc, and requested us to sign an agreement (sort of consent relieving them and the facilities from unpleasant outcomes), recognizing our total understanding of the operation. Later some guy came to my room to shave me from knees up except the head. On the “D-Day” with an empty stomach at noon time one nurse and the doctor in charge of the pre-operative preparations gave me a pill for relaxation, dressed me into a light white gown and then took me on a stretcher to the corridor, to an elevator and down to the surgery theatre. My wife accompanied me all the way and we said good bye when pushed into the hall. There two doctors dressed in green gowns asked me if I knew them. They were the anaesthetists. They informed of their job and asked me to show my back. I was already sort of drudged with the relaxation pill. Then I felt a sort of cold liquid flowing into my spine (epidural anaesthesia, and fall asleep right away. Much later, I recall being awaken at one time (during the operation, I guess) by the doctor calling my name to which I answer (I saw three or four silhouettes over me) He asked me if I was feeling all right and I said that I felt urinating. Then I heard him saying “give him more anaesthesia” and I fallen asleep again and only awaken at around 22H00 at the recovery room, and saw my wife in front smiling at me. She had been the whole time of the operation in a wanting lounge where she was kept informed on the progression of the surgery. She told me that Dr. Komatsu at one time shown her my prostate gland (on the way to the pathologist lab of the hospital) explaining that it looked normal in aspect shape and size. He told me later that the operation took 5 hours and that he had carefully suck/vacuum all liquid and pieces of soft tissue surrounding the organs before stitching me up.

I stayed in the hospital 17 days (5 in preparation for the operation and 12 for recuperating until the catheter was taken out). The hospital facilities (in Tokyo) and staff were excellent. Well looked after, clean and efficient. Two days after operation I was standing and walking in the hospital’s corridor (a squared ring of 350 meters long) pushing a tripod with attached medicine tubes and catheter sac. I never experienced pain and felt good for the physical movements. Five days later I could go out and enjoy the outer fresh air at the hospital‘s gardens.

 

In this anniversary I got the periodical PSA result. It increased to the levels of March 2015 at 1.48 ng/ml. It is higher than the previous but still low and I am not sure if the level is acceptable to the 68ga PSMA PET/MRI trial. I hope Coimbra hospital allows me to wait for another increase.
What surprised me this time is the level of the testosterone. It has been decreasing since September 2014 from T=356 to T=209 ng/dL (Aug 2015). This is considered lower than normal in a 65 years old man. I would appreciate if some comrade here could give some “light” on the incidence. What can be causing the decrease? Should I try TRT?
I recall a survivor in this forum (Jogger; http://csn.cancer.org/node/234869#comment-1207973) commenting about his experience with decreasing levels of Testosterone, but do not know exactly how he managed to control his status at the end.

What can an ADT patient do when his body lowers the testosterone naturally to such levels under the 280 threshold (normal = >280 ng/dL)?

Best wishes to all.

VGama

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Why are you concerned about your testosterone level?  What does your doctor say about it?

High testosterone (T) is commonly associated w/PCa growth, so if the higher than expected post-surgical PSA is of concern, I'd think that a low T-level would be the least of your problems.  Low T-level is commonly associated w/ED (or lack of sex drive), depression, fatique and a loss in bone density. Are you experiencing any of these things?  If so, then perhaps some treatment is warranted.  However, such treatment is not normally recommended for PCa patients.

My guess is that if you raise your T-level significantly, it may trigger PCa growth in some way and cause your PSA to rise further. So, I guess it all depends what you consider most important -- raising your T-level or lowering your PSA.  Personally, unless the low T-level is causing a specific identifyable medical/psychological problem, I'd focus on keeping your PSA as low as possible and avoid unncessarily simulating PCa growth by increasing your T-level. 

It's a tricky problem.  Good luck with whatever you decide to do.

 

Old Salt
Posts: 720
Joined: Aug 2014

I agree with Swingshiftworker that this appears to be a non-issue. Just keep exercising and if I were you, I would stay miles away from testosterone replacement therapies, considering that you may have micrometastases.

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

Thanks for the opinions.

For the moment I will keep things as they are. Lower testosterone is not affecting my daily routines. T=200 is also not that low but it has been decreasing along the past one year whose cause I would like to know what it really is.
I do not want to mess up with the normal flow of the PSA (produced by the cancer) but if T comes down to very low levels similarly to Jogger in my link above, I will have to do something. At the present, I am not experiencing depression or fatigue so that I rule these out. I will check any added bone loss because I was diagnosed with osteopenia just before starting HT. In my last DEXA scan of 2012 osteopenia did not vary and kept at -1.2 (osteoporosis starts at -2.5). Thanks for the suggestions ,Swing and Salt.

In any case this year I have “enjoyed” some moments of stress and in my last health checkups of April some blood markers were out of the normal range (Microalbuminuria at 6.13 mg/dL; Glomerular filtration rate (GFR) at 49.9 mL/min/1.73 and the Creatinine in the blood at 1.5 mg/dL). Specifically these are related to kidney function but it could have origins from a case of diabetes, which condition I will check in detail in September.

Our friend survivor Traveller gave me a tip by mail informing that “any extra fat around the waist is turned in to estradiol which can reduce T score”. Thanks Traveller, sorry for commenting about the tip here but it could well be the reason in my case and it may help the many interested in our comments.
I have the same weight of last year though created a bigger “Michelin-tire” around my waist. I know that higher creatinine also relates to hypothyroidism (Thyroid dysfunction due to hormonal treatments). I wonder if such could also relate to a problem in the adrenal glands (on the top of the kidneys) producing the stuff. This substance/steroid increases when biosynthesized from testosterone in fat, leading to a deficiency of beneficial testosterone.

http://www.lifeextension.com/magazine/2008/11/dangers-of-excess-estrogen-in-the-aging-male/page-02

I will keep the antennas up.

Regards

VG

 

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

For some unexplained reason my PSA is standing still. It seems that the bandit decided to keep a low profile for not being detected but I am not enjoying the “thriller series”. This time the PSA gone lower 0.02 points to become PSA=1.46 ng/ml (1.48 in August).
Together with the above PSA histology the doubling time calculates to PSADT= 76 months (6.3 years).

I decided to inform this result to Coimbra hospital (that is running the clinical trial for the G68 PSMA PET/MRI) but now I am worried of losing the opportunity of free participation in the trial. They may stop it in mid 2016 by which time the PSA will be at the right level. Such would cause me to do the test later but at my own expense (about 3,000 Euros). Not sure yet on what to do.
In regards to the Diabetes tests they all come within the normal levels. I will have to check any kidney mal functioning.

Well this post is just to inform ya about my saga. Though, this is the time for pomegranates and pumpkins and I am enjoying them in this All Saints Feast.

Best wishes to all comrades.

VG   Image result for pumpkin icons

Josephg
Posts: 147
Joined: Jan 2013

Very good PSA test results news, Vasco.

I totally understand your concern regarding the impact of these good PSA test results on your potential eligibility for the Coimbra Hospital clinical trial.  How ironic that good PSA test results can potentially have less than totally desired results in other, yet related areas.

In my opinion, however, your good PSA test results overweigh the other potential less attractive ramifications.

Tonight, I will toast you and your good PSA test results with a glass or three of red wine.

traveler
Posts: 28
Joined: Jun 2011

Vasco,

As much as I know you would like to join the trial at Coimbra, the fact that the Bandit has "gone to sleep" is a good thing. If the doubling time remains even half of what it is currently you can relax and enjoy your golf, red wine and fruit trees!!

 

I am very pleased for you and Karen and pass on my best wishes.

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I am happy for you, and selfishly, we cannot afford to lose you.  I believe the insights and information you share are simply not available anywhere else.  Love, Rakendra

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

 

Ditto what Rakenda said !    While there are a half-dozen long-term guys here who are wonderful sources of detailed information, I would not recognize this board without you , Vasco.

But, of course, there is nothing to suggest that you won't be here for a very long time to come,

max

Will Doran
Posts: 207
Joined: Sep 2015

VG

Glad to hear you continue to do well.  I have also found that all the information you have sent us is very helpful. I am very Thankful for all you have taught me.  I think we all have much to be thankful for this year.  We are all still here and seem to be holding our own.

Best wishes to all for a Very Happy Thanksgiving, and a Wonderful Christmas Season and a Great New Year.  Enjoy every minute of the season.

Be assured that ALL are in my thoughts and Prayers.

Keep up the good, hard fight.

Peace and God Bless

Love to all,

Will

 

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

Update

The PSA has plateaued. This time it come at PSA=1.41 ng/ml a very similar result to the previous ones, since March 2015 (1.49). The bandit is there and probably playing me a trick. I have not changed anything (life style, diet, medications, etc) to have it so quiet.
The testosterone is also slightly lower this time at T=181 ng/dL (T=209 in Aug 2015). I figured that the lower T may be due to an increase of Estradiol, typical of men when we get older. E is made of testosterone and my result was E=35.27 pg/ml (the normal level for man is up to 41 pg/ml).

I am not sure of the reason but my GP included in the test sheet of this time a request for Prolactin (PRL). This is a hormone produced at the pituitary for stimulating the production of milk (????). Surely HT has created boobs in me but they are unnoticed and do not drip milk. Maybe I am at the risk for breast cancer and such a PRL test is necessary. Well, PRL was 3.80 ng/ml and the normal range in men is 2.5 - 17.4 ng/ml.

Estradiol infusions or patches are used by some oncologists in the treatment of PCa, in particular to hormone refractory patients. I wonder if the quantity of Estradiaol circulating in my system is that enough to pin-down cancer’s activity.(?)

This is 4 years since starting this long “vacation” off drugs. I may well reach my dream of a 5 years period of free of symptoms and free of the side effects.

Wishing the best to all my comrades.

VG

 

Josephg
Posts: 147
Joined: Jan 2013

This sounds like good news, Vasco.

80% of the way to your 5th year of vacation.

I will toast you this evening with a glass of red wine.

You are an inspiration to all of us.

Old Salt
Posts: 720
Joined: Aug 2014

The results look good to me, considering your background. Enjoy!

Why do you write that the bandit has played a trick on you?

PS: The change in the testosterone looks non-significant to me.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Thinking good thoughts for you.......a toast tonight.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

 

Yes Hopeful, a toast for Vasco's wonderful numbers indeed !

But I work tonight, so toasting now, at around noon...  max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Glad to hear it, Vasco.  Hope it continues.  Goodl luck!

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

This month PSA come as 1.59 ng/ml. This is still consistent with a slow increase that started in May 2014. The data provides a doubling time of PSADT=6.4 years (77 months). Here are the plotted results:

May 2014; PSA=1.20 ; T=341
Sep 2014; PSA=1.24 ; T=356
Dec 2014; PSA=1.28 ; T=278
Mar 2015; PSA=1.49 ; T=?
Jun 2015; PSA=1.30 ; T=252
Nov 2015; PSA=1.46 ; T=?
Mar 2016; PSA=1.41 ; T=181
Jun 2016; PSA=1.59 ; T=?

As I posted above, my goal is to have a PET exam (image study) before restarting the hormonal treatment (IADT). Along this waiting period several PET contrast agents have immerged according to their efficacy in detecting oligometastases. The one proving to provide the best positive image (the contender) is the PSMA. In any case there are still others in the drawing boards being researched so that my choice may be fixed by the time the PSA becomes closer to 2.0 ng/ml.

So far this long PSADT is providing me a longer term off-drugs and therefore off the side effects. I am enjoying the opportunity that this long vacation gives me to care to my fruit trees and vegetables.

Best wishes to all.

VGama

traveler
Posts: 28
Joined: Jun 2011

Great News Vasco!!

I wish you all the very best and I will toast you tonight!!

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Very glad for this news.

 

Time for another celebration. 

 

 

Will Doran
Posts: 207
Joined: Sep 2015

VGama

Great news.  Congratulations. 16 years, that's great.  My hopes and prayers are that this continues for you.

Peace and God Bless

Will

Josephg
Posts: 147
Joined: Jan 2013

That is great news, Vasco!  Still plenty of time before 2.0 is reached, and it becomes decision time, again.

I will definitely toast to you this evening with a glass of red wine or two.

Let us know how your fruit trees and vegetables are progressing, as well.

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

In March of 2014 I posted here a thread under the title “IADT- vacations period very close to its end”. I did it because of PSA fast increasing results since the end of the effectiveness of the last Eligard shot (Leuprolide). I was freaking out and anxiety has set in.

Since then the PSA has maintained a sluggish advancement in a sort of plateaued pattern. The last PSA (Sep 2016) at 1.56 ng/ml again confirms the situation (Jun 2016 PSA=1.59). Another interesting aspect of the results is that the testosterone which has been decreasing since Sep of 2014, has now double the previous (T=181) increasing to T= 364, meaning that I have more T-serum in circulation very opportune and tempting for the bandit to start a T frenzy cocktail party again.

This result marks the period of vacations away from hormonal drugs in 4 .5 years and 5 years (58 months) since my last Eligard 45mg shot. I am still far from the PSA=2.0 trigger threshold to restart HT. Before that I will have the expected image study so much discussed in above posts. The length on vacation have provided me with chances in getting better image exams that were still on the drawing boards before starting this thread.

In the last blood tests I also have verified an increase in liver‘s function indicators (AST, ALT, GGT) which have double now at AST=47 UI/L; ALT=83 UI/L; GGT=78 UI/L. ALP has decreased to 63 (indication of other enzymes proliferation). The Microalbuminuria,Creatinine and Glomerular filtration rate (GFR) maintain the higher levels now making me to believe that I am experiencing pre-diabetes. The best I can do is to change diets, giving up with sweets, animal protein and animal fat, and give preferences to fruits, vegetables, and whole grains products, in other words, trying to become healthy again. Can I do it?

Best to all survivors in their journeys,

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

You continue to show your mastery over PCa at the poker game of HT, Vasco.  It sounds like things will remain stable and managable for a long time to come.

I have had elevated AST-ALT levels for decades, much higher than your current numbers.   I attribute part of this to earlier liver trauma, part to fatty liver.  Fatty liver (which I suspect you do NOT have) is indeed controllable with diet.  The statin drugs  (Lipitor, etc.) can also control it in many situations.  And alcohol is to be taken in moderation, if at all.

Keep winning and we will keep being impressed,

max

tonycue
Posts: 39
Joined: Aug 2016

The Headline says it all

    Best wishes    Tony

Old Salt
Posts: 720
Joined: Aug 2014

In my simple mind, that's a great result, especially considering the testosterone uptick.

Will Doran
Posts: 207
Joined: Sep 2015

VG,

Congratulations, again.

It sounds like we are on the same treatment path.  My PSA has been holding at <0.010 for three years (post surgery and radiation) while my Testosterone has been at 17 (normal being 250 - 1,100). I was on Lupron. I month ago I had blood work done and my testosterone has made a slow climb to 170 and I'm now back to 320, in the normal range. My PSA is at 0.035 at this time.  I've been off the Lupron for 10 Months now.  Last shot was Oct. 2015.  Doctors say as long as I stay below a PSA of 2, I can stay off Hormone therapy.  If not then I will go back on some sort of Hormone Therapy.

Let's hope for the best, and that we can continue to stay off the hormone treatments.  However, if I need to go back on those treatments, then I will do it.  As you said.  We will "Keep the Faith".

Love, Peace and God Bless

Will

Josephg
Posts: 147
Joined: Jan 2013

Vasco,

Your management work of your PCa, your complete transparency and candor through your continuing journey, along with your informed perspectives and thought-provoking recommendations, are truly inspirational to all of us.

You are ESSENTIAL to the continuing success of this forum.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3227
Joined: May 2012

Joseph,

You said to Vasco what I meant to say, but couldn't.  Perfectly stated.

max

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

 

I appreciate all the good wishes laid here from my buddies. I am keeping the faith and hope you do it as well.

Max’s comments on statins, has awaken my long curiosity in the action of these drugs. I am taking Simvastatin 20mg on On/Off intervals periods of: two months On three months Off, with the intent of controlling high blood pressure (high but not super high).
From researches, I know that statins can mask the PSA to certain extent, as well as influence the lipids levels. They also reduce cholesterol by eliminating the HMG-CoA reductase, an enzyme in liver for the production of cholesterol; however, one of the side effects of all statins is to increase ALT. The drug’s manufacturer cautious and recommends to stop the drug if ALT levels rise above 10-fold the upper limit of normal (61 UI/L), or persist in being above 5-fold elevated. Fortunately this is not my case now with ALT=83 UI/L. I wonder if statins also increase AST, the other marker for liver function impairment.

Dr. Myers and famous PCa oncologists use statins in their protocols of drugs-cocktails as protective means against drugs side effects. In one of Myers video, he comments on his preference for Crestor (Rosuvastatin) which is a newer statin class drug, seems to be the best in handling hypercholesterolemia. It also increases the level of HDL, the good cholesterol, and it seems to be friendlier to liver than the other statins (comparing with past experiences). I do not know if Crestor is preferred by Myers because of lesser interaction with HT drugs, in particular with Ketokonazole, one of the common HT drugs of his arsenal. How far is it better than the others in regards to keep ALT within normal levels is unknown as it also metabolizes in the liver via CYP 2C9, (the same coenzyme used by the other statins).

Lipitor (Atorvastatin) is known in lowering the lipids (therefore its trade name).but it is similar to Simvastatin regarding the increase of ALT. It is also known to be linked to the causes of type 2 diabetes. I wonder what would be its actions in liver enzymes. The lipids (hydrocarbons) are the little parts making the cells, which, similarly to these, become the building blocks of our body.

Most probably all the above effects have something to do with kidney function impairment (?). This is of concern to me because malfunction of kidney limits the use of contrast agents, even prohibiting PET exams. I have a lower creatinine at 1.61 ng/dL but still high above the normal of 1.20. Last year it was 1.77 which could turn my oligometastases treatment adventure into jeopardy. I have no evidences but I read about some guys being refused the PET exam because of their creatinine set above 1.70 ng/dL. This is the main reason for my interest in verifying/regulating liver and kidney functionality.

I would appreciate any note from you about this subject. It would help me to understand better the waters I am sailing in.

Thanks again.

VGama

Old Salt
Posts: 720
Joined: Aug 2014

First of all, statins are not used to lower blood pressure. They are used to lower LDL and possibly raise HDL; triglycerides may also be lowered.

Secondly, statins do not eliminate HMG-CoA reductase; they inhibit the enzyme.

Statins (all of them) have well known side effects, and it's recommended to have period checks of liver enzymes etc.

To my knowledge, simvastatin was one of the early statins. Lipitor is a later one, marketed by Pfizer, but now available as a generic (atorvastatin). Crestor is yet a newer statin, still under patent protection. I don't know if there is evidence that it is 'better' than atorvastatin. It is used at a lower dose than atorvastatin, but that doesn't necessarily mean that it's 'better'. It's conceivable that the side effects are less, but I haven't looked.

With respect to scans, it is practice (in the US) to determine kidney function (creatinine) prior to administering certain imaging agents.

As an aside, I have been a long-term statin (initially Lipitor but now the generic) user; as recommended by my highly-qualified cardiologist.

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

Old Salt,

Thank you for tunning in. You are right regarding the statins not being used for lowering the blood pressure. My mistake. I am taking Adelat 35 daily for the blood pressure and aspirin 100mg since 2001 at recommendation by JH oncologist. Simvastatin is to control the cholesterol which has been good even when off the drug, now at 180 mg/dL. Regarding the PET scans do you know what is the upper limit of creatinine for acceptance to the tests?

Thanks in advance.

VG

  

Old Salt
Posts: 720
Joined: Aug 2014

I don't know the answer to the above question, but I did find out that hospitals have protocols to make sure the kidney can handle the imaging (agent). Patients with renal insufficiency and/or diabetes mellitus are especially at risk.

I did find a paper which stated that some institutions regard a creatinine level >1.5 mg/dL as 'abnormal'; while others use a level above 2.0 as 'abnormal'. It looks like you may be somewhere in between. But as I wrote, the radiological institute should be able to tell you what they find acceptable for YOUR scan, using YOUR health data.

 I hope this is somewhat helpful

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