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Systemic Treatment – my experience and update

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

Though the title of the thread doesn’t instigate reading for many of the attendants, the term systemic surely will strike the curiosity of some as it did to me back in 2001 when I was diagnosed with recurrence after prostatectomy. It has just passed seven months since RP and I was again hearing about cancer.
I felt frightened and did not know what to do or expect but, then, there was this lovely “Guard Angel” appearing from nowhere helping me with opinions on what was going on. The Angel was Mrs. Jacqueline Strax (of psa-rising). She started by saying “... first thing is to check if you are systemic”.
What a hell, what does that word mean?

Well, I wasn’t systemic at the time but ten years later in 2010, after a second recurrence from salvage radiotherapy, the doctor diagnosed me with systemic disease.

In several past threads I have narrated the pitfalls and events experienced along the years of my PCa story, including the failed commitment in trying to locate the bandit with sophisticated PET scans, procuring still an opportunity in getting cured via an oligometastatic treatment (https://csn.cancer.org/node/314326).
The update today regards the last consultation which I thought that would represent the re-start of my Systemic Treatment (intermittent ADT) started in 2010 and which has been on hold since 2012, but the doctor put it simple. He just said “… … we should wait till the PSA gets to 2.5”.

The fact is that my PSA has been on “ups and downs” since September of 2017, with varying values between 1.80 and 2.14, but the trigger level for restarting treatment is set to be 2.5 ng/ml. The last PSA (Nov 2019) was 1.95 (T=357) lower than the previous of 2.14 in Aug 2019.

I inquire the doctor what could be the reason behind this pattern of the PSA showing sharp increases and decreases, and plateaus in between, along the seven years I have been without treatment. I know that this is typical in benign issues like BPH but I have no prostate gland in place. Is there any particular understanding on these results? Is it a signal that cancer is spreading to far places?

He said; …   … No no !
His opinion is that both; the long period PSAdt and behavior reflect the type of the low aggressive cells which were in fact the initial diagnosis back in 2000 (Gs: 2+3; 5). Gleason grade 2 cells behave more like benign ones but they are cancerous. He also suggested that by delaying ADT further till it reaches 2.5, I am not risking a spreading to far places. That comment was wonderful but I am still worried. In any case, I will wait till the next consultation scheduled for June 2020.

For those interested in the details pertaining to my case;
I was diagnosed in 2000 at the age of 50 with a PSA of 22.4 and a Gleason score of 5 (2+3), which data was reconfirmed by the pathologist post open surgery. His report also indicated a voluminous cancer occupying 2/3 of the gland, negative seminal vesicles and negative lymph nodes (9 numbers dissected) but positive margins.
The PSA at one month post OP was high at 0.18 and that increased to 0.42 in just six months. Recurrence was declared in March of 2001, leading to consultations with respectful oncologists at JH and MSKCC. Metastatic cancer of Gleason score 5 wasn’t common and that arouse the interest of researchers and specialists regarding the characteristics of my case.
Instead of immediate salvage treatment, the doctors recommended WW (the AS of the old times) followed with a series of periodical tests and image exams (BS, CT, MRI, X-ray) that were negative along the 5 years of waiting. The only recommendation was for daily supplements (Selenium, Vitamin E and aspirin 100mg) and some changes in diet.
In the fall of 2006 the oncologist at JH finally recommended me to start radiation therapy (SRT) due to the PSA that was close to their established threshold of 4.0. The RT covered the prostate bed and localized lymph nodes (no definite targets), with a total dose of 68 Gy delivered in 35 sections done during two months. The PSA at the start was 3.86 and this declined to 0.05 ng/ml, 13 months post RT representing success. However, three years later the PSA rouse again and I become a systemic patient.

In another forum, I received comments suggesting that I should have been put on radiation sooner instead of watchful waiting but my case was unique constituted of low grade micrometastases that were known to respond badly to the traditional sequential treatments involving salvage radiation. Nowadays similar cases of micrometastases in surgery failures are moved directly to chemotherapy instead of radiation as it covers wider areas and it doesn’t dependent of existing targets, as required in radiation treatments.

My lay opinion regarding Systemic diagnosis and treatment is that these are planned according to the status of the patient, at the time that such has been declared. Those with no apparent far metastases and that have come from failed radicals (RP and/or RT) and subsequent salvage therapy, are usually recommended for androgen deprivation therapy (ADT). Advanced cases categorized for existing far metastases and/or uncontrollable PSA, to whom radicals would not do much, are usually recommended to systemic chemotherapy. The combination of these modalities is also used as a multimodal treatment, which outcomes have demonstrated in trials better results.

ADT involves manipulations intended to block the bandit from having access to the androgens circulating in our body (testosterone and dihydrotestosterone). The cancer feeds on androgens and without them it dies or turns indolent during long periods that can last ten or more years. In the case of Chemotherapy, the treatment aims directly the cancerous cell trying to avoid these from dividing and multiplying. The chemo works by destroying the DNA of the cells. Surely this sort of action will also affect benign cells so that the dose is small falling short in the killing capabilities, making the treatment palliative and not curative.
In patients with some particulars, oncologists treat systemic disease with immunotherapy. The treatment consists in manipulating the immune system trying to trigger its natural actions in handling or attacking and repairing what is considered foreign, malicious or malfunctioning (virus, bacteria, cancerous cells, etc) which are or have put into jeopardy the proper functioning of the body. This is a wonderful way to treat maladies, particularly as it works systemically covering the whole body. However, messing up with our immune system requires careful vigilance as it may interfere with the body’s defenses mechanism. By inactivating the immune system, one risks infection that could initiate other diseases or even leading to death.
However, well applied and regulated immunotherapy, using sort of agents (monoclonals) that have been studied along the years, one manages safely to switch off those mechanism in cells’ DNA, which got the purposes in protecting the cell from destruction. In other words, the immunotherapy can be manipulated to directly disturb cancerous cells facilitating the treatment/drugs taken to kill the cancer.

Medical oncologists are the best choice to treat systemic cases. These have the experience and knowhow needed in drugs interaction and on their effects in the patient, particularly when other illnesses exist or are expected to arise (aged patients) and need separate medication too. Surely, those traditional treatments administered sequentially (such as ADT) which got well established protocols are also administered by the urologist attending us.

My systemic ADT experience started in Nov 2010 with a PSA of 1.0 ng/ml. The chosen protocol by my doctor (uro-oncologist) was mono blockade done with the agonist Eligard (leuprolide) 6-month shot. This was preceded with one month of daily antiandrogens Cyproterone acetate 50mg. The therapy was programmed for intermittent administration regulated via ON and OFF periods. The “ON-drugs” would be 12 months of constant remission in PSA levels (less than 0.05 ng/ml), followed by “OFF-drugs” which period would last till a surge of the PSA reaching a level of 2.5 ng/ml.

In my “ON-drugs” period I managed remission during 18 months. That was caused by a long period in chemical castration with the testosterone (T) lower than 30 ng/dL. Initially, before the Eligard shot, the testosterone was 376 ng/dL and it dropped to 28 in just one month. The PSA also accompanied the decrease becoming 0.05 six month post the shot’s administration. Both levels (T and PSA) continue to drop to the assays low limit of detection (LLD) of T<0.1 and PSA<0.02, during and after administration of the second and third Eligard shots in June and November 2011. In total I was in remission levels (PSA<0.05) from May 2011 to November 2012. The effect of the last Eligard ended in August of 2012 leading to a gradual increase of the T and PSA. By January of 2013 T has returned to normal levels of 252 ng/dL and the PSA increased to 0.13 ng/ml, out of remission.

My experience while ON-drugs included numerous but mild side effects being fatigue the one most annoying. Some effects were present but unnoticed. I could relate some symptoms latter that I thought existing due to other factors such as aging. One example is the rheumatism/arthritis symptoms that increased gradually at the last months of the ON-drugs period (feet and knees), but that suddenly started to disappear gradually accompanying the increase of the testosterone when on the OFF-drugs period. Mood changes and fatigue were also reduced to 2 in a scale of 1 to 10 and the testicles become firmer again from a spongy like shape when ON-drugs. Libido was back with some action but the penis still shorter as it has been since surgery.

I feel fortunate for the positive response the cancer shown against ADT. I hope it becomes sort of indolent again when I restart treatment. Sorry for the long thread.

Best to all,

VGama

 

Josephg
Posts: 289
Joined: Jan 2013

Hi Vasco,

I really appreciate your concise summary of your journey with PCa.

As previously diiscussed, I believe that I am on a similar path as you in my PCa journey, though you may currently be further along in your journey.  As with all of your posts, I find your summary to be extremely informative.  Even though everyone's PCa journey has its own unique elements, your summary gives me a much clearer insight into what I may be facing, as I progress along on my own PCa Journey. I am also greatly encouraged that you are 18 years into your PCa journey, and you still are able to embrace life and find great quality and satisfaction in your daily life and experiences.

This Forum and its members are SO much better off, for your presence and continuing perspectives and lay guidance.

I continue to wish you the best of outcomes on your PCa journey.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Thank you, Vasco. I knew a goodly bit of what you wrote, but this Abstract presentation is wonderful.   You must be one of the few guys to test with a Gleason of 5 and then have this many years of a fight....   I know the info is of great use to many.   No one navigates like the great da Gama

 

.

Clevelandguy
Posts: 690
Joined: Jun 2015

Hi Vasco,

Great post about your jouney so far. Every time someone posts I always look to see what Vasco has to say. You have been a great resource for many of us "survivors" and newbies alike with your knowledge and insight.   Hope you get to hang around for many years to come and your quality of life is good. Your help here is remarkable and appreciated.

Dave 3+4

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi there,

I think it is worth noting that Gleason grade 5 ( 2 +3 ) is no longer used, if Vasco was diagnosed today he would be given a Gleason 6 ( 3 +3 ) as cells with a Gleason Score of 2 are no longer counted for grading purposes.
One of the unusual things about Vasco's PCa is that he has cancer that spread outside the prostate, this is very rare for such a low Gleason Score where the primary treatment was a radical prostatectomy.
He also had an open prostatectomy which is very rare these days with the choice being between laparoscopic and robot assisted laparoscopic surgery.
He also had radiation alone after a long wait whereas today I suspect almost everyone in his shoes would be put down for six months of ADT plus salvage radiation almost immediately his post operative PSA rose above the limit of detection.
In France having positive margins is a reason for preventative ADT and radiation, they do not wait for it to come crawling back out of it's hole.
It is a testament to Vasco's longevity that the course of treatments has changed so much.

Best wishes,

Georges

Trew
Posts: 931
Joined: Jan 2010

Vasco, What an exciting ride this PC stuff has given you!  But amzingly, you are still here, too.  My PSA never went over 12 but my first gleason score was 4+4 and 6 weeks later it was at 5 + 4.  

That suggests to me PSA can be a very poor indicator of what is going on inside.  

Very glad to see you are stil with us.

 

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi Trew,

You are right there.
There is a very poor correlation between the level of PSA and the scale of the cancer.
Most doctors hate maths, if they liked it more they might have become physical scientists :-)
Roughly speaking, and this is subject to a lot of caveats as different cancers have very different behaviours, but there is a direct proportion between the level of PSA and the tumour volume and an inverse relationship between the PSA value and the Gleason score.
This is because the bigger the tumour the higher the level of PSA in the blood.
But low Gleason grade cancer cells are more like normal prostate cells insofar as they make PSA, etc and do not go walkabout making metastases. Higher grade cells do not bother with making PSA and get on with metastasing.
This is one of the reasons that the thankfully rare Gleason 9 and 10's are so dangerous.
The PSA remains close to the norm and there is not a lot to find by a DRE, Digital Rectal Examination, but they may already have moved elsewhere.
Men with Grade 4 metastatic disease have a much brighter future than they did even five years ago.
It is very case dependent, tell us more about yourself and we might be able to help you more.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

 

Being diagnosed with cancer at a time when I was feeling invincible on my 50th was very traumatic to me.  I recall that mental imagery mimicking walkways, leading to the infinite, with people in line moving forward. I was walking along too but on a side narrow pathway running along but curving and rising to one side deviating further at the end. I still have this visual imagery sometimes, but the pathway seems to be now filled with people walking towards their destiny.

Thanks you for the comments on my above post. I think it long and I wanted to make it shorter and easier for the newbies to read but after 19 years on the run I felt that there were more to write than to cut.
Your presence in this forum is surely much appreciated too. I am grateful for your opinions that have elucidated me in matters I didn't understand and on those lesser traditional. Any comment posted here makes a difference to all those afflicted with our common disease.

I wish that we could say one day “I am cured, goodbye! ”

Thanks

 

ufknkidding
Posts: 45
Joined: Aug 2019

Thanks for sharing your story and reminding me not to become complacent about regular follow-ups after my RARP.  It is very encouraging to read how you have fought and won this battle for 18+ years.  I'm in my early 50s so figure I will have a similar fight ahead of me although I recognize no two stories are the same so my side narrow path will have different curves and hills.  My first PSA post surgery was undetectable so that was encouraging.  My biggest physiological challenges so far are regaining contenance (improving daily) and ED (viagra helping some but still a long way to go).  My biggest mental challenge is meeting other survivors and hearing, "Wow, you are so young."  I plan to avoid this by no longer attending a PCa support group.  I am thankful for this discussion board and reading stories like yours which gives me hope.

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Your test tube has certainly been sampled.  Have to read your story and reread your story.  Quiet a wealth of knowledge for us on this site.  You have helped a lot of folks (including me) on this site.  And maybe one day we will be able to say, "we are cured".  Keep sharing the words with our friends in need.  They are not in vain.

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi there,

I was on a career conversion course whan I was diagnosed at 55 and I was working flat out. I did not have a lot of time to do research but I knew that a PSA of 133 was bad before I saw the urologist.
It then turned out to be better than I expected, no detectable metastases, the tumour highly focused in the prostate, so yippee for that.
The bad news was that the doctors thought that my best chance was a prostatectomy, plus radiation and ADT.
Two years later I know a lot more about prostate cancer and I have met a lot of men online with cancer who are in better and worse situations than me.
Maybe I am really cured or maybe it will come sneaking back, who knows, I may be on a quiet bit of the coaster or I may have stopped in the station.
On the latter front I am in the same boat as men who have have been treated for high grade prostate confined tumours.
It may take years for metastases to occur but in a proprtion of cases they will and need further treatment.
I feel that Vasco is on a plateau with his PCa, it is not doing much and it could continue like this for years.
Let's hope so!

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Keep posting.  Your test tube has been sampled a lot too.  I think we come to a point that we are in a coexistence state.  A sort of homeostasis with this cancer.  And if that is cured.  I will take it.

Jim1961
Posts: 14
Joined: Sep 2019

Thank you Vasco for always sharing on this forum with us all.  You have had quite the journey and I'm sure many of us have learned from your extensive expereince.  I will keep you in my prayers as you continue to battle the beast and look forward to the day we learn of further progress in beating this disease!  God bless!

 

IndyJoe
Posts: 15
Joined: Nov 2019

Hey Vasco, I appreciate getting a chance to read your story in full so thanks for putting this together.  There is a lot we all can take from it.  Among others, I admire the shire determination you exhibit in ridding yourself of this unwelcomed intruder.  You are the best man.  Happy Holidays !!

Joe

 

Grinder
Posts: 473
Joined: Mar 2017

We've said before... "It's not about the cards you're dealt, but how you play the hand."

If life was a game of strip poker, and judging from the way VdG plays terrible cards, everyone else would be naked before VdG even loosened his tie.

This is my insensitive way of expressing my admiration the way VdG has taken a bowl of sh*t stew and turned it into a gourmet dish that even Gordon Ramsey would grudgingly approve of, and then shares it regularly with total strangers.

Kudos to him for facing such difficult odds and still sharing his experiences in such an analytical and erudite manner.

Josephg
Posts: 289
Joined: Jan 2013

Well said, Grinder.  I could not have expressed a better metaphor for describing Vasco.

bdhilton
Posts: 795
Joined: Jan 2010

As always, very informative and positive....thank you

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

I started this thread last December thinking that in 2020 I would simply continue reporting my story with the bandit which is already on its 20Th anniversary. Far were I and you from thinking that we would be confronting a monster much more dangerous than PCa, and for whom treatment doesn’t exist.

PCa in comparison have several ways to be tackled all of them providing quite a long period of life allowing us of enjoying moments with the ones dear to us. Are we luckier than the covid-19 patients?

Sars-cov2 is in fact dangerous. Like PCa It can hide some were in our body but one has no means to locate the monster before it strikes and begins life in an invaded cell. PCa can be detected as it produces known proteins that can be target by a contrast agent. The spread of the sicknesses cannot be compared too. The virus expands rapidly where the cancer may take years before it becomes deadly. Interestingly, the coronavirus particle size is 80 to 120 nanometers (nm) in diameter, doubling the microscopic size of a PCa cell that ranges from 30 to 90 nm in diameter.
After this Covid-19 pandemic, life will not be the same. Returning to normalcy means to start a different way of living, where even the bandit will need to adapt. Lol

The update today regards the PSA which decreased again to 1.82 ng/ml. This is lower than the previous of 1.95 of Nov 2019. The decrease comes from an high 2.14 in August 2019. I do not understand the cause for these ups and downs in the PSA occurring along the last two years. I wonder if the daily aspirin (100 mg) or the daily simvastatin (20mg) or/and the daily co-diovan (80/12.5mg) can influence in the advancement of the cancer. My doctor has no opinion on the reason for the bandit’s behavior. He seems to be interested only in the treatment. He is waiting for the PSA to reach 2.5 to restart the hormonal treatment. T is still at the 360 ng/dL level.

Let’s keep distance when meeting someone and wash our hands before touching our face. The best is still to stay at home.

Best wishes,

VGama

 

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi Vasco,

It is very hard to say what your PCa is doing.
The decline is not large but it seems to be sustained.
In the absence of any other indications you have to carry on and see what happens next time round.

Best wishes,

Georges

Clevelandguy
Posts: 690
Joined: Jun 2015

Hi Vasco,

Glad to hear you are stabilized for the most part, hope you don't have to go back on the hormonal treatment.  I can't imagine that is any fun.  I get my six year Psa test results at the beginning of May, keeping my fingers crossed.

Dave

3+4

Josephg
Posts: 289
Joined: Jan 2013

I see your test results as good news, Vasco, as the PSA number is not currently going up, and you can continue your treatment vacation.  I will toast your good/stable results with a glass or two of red wine tonight.

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi Vasco,

In the absence of other indications it is looking good.
One day at a time.
The wife has discovered Pimms drank at French strength, 50:50 with ginger ale and a handful of ice.
I will raise you a G&T, hic!

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

Well,

So it was. I had my PCa consultation this time on the phone. It felt good to be treated as a VIP by the NHS. They could do this more often even if Covid-19 fades away. The hospital doesn't get overcrowded and the patient avoids long trips to city and the messy typically of major hospitals. In particular, this time where Lisbon is confronting a chaotic state with increasing contagious Covid-19 cases. The area is getting the highest daily number of new cases for the whole country.

The consultation was short as my PSA is still low (1.82). The doctor scheduled me for a consultation in February 2021.

Time to go for a swim.

VG

  

eonore
Posts: 109
Joined: Jun 2017

Hi Vasco,

Congratulations on the great news!  Your vacation from systemic treatment continues.  Your story goes to show how unpredictable this disease can be.

Eric

 

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi Vasco,

That seems great, as long as you keep jogging along at that level it seems that the bandit is hiding in the trees and unlikely to bother you.
Glad to hear that you are keeping well, it is too cold for swimming much round here without a wetsuit unless you are particularly hardy.
I will have an update over the next few days as I have a blood test and a consultation with Pooh.

Best wishes,

Georges

Clevelandguy
Posts: 690
Joined: Jun 2015

Congrats Vasco,

You can rest easy for another year.  Stay safe and have a brewsky on me.

Dave 3+4

Josephg
Posts: 289
Joined: Jan 2013

Great news, Vasco.  

A steady PSA keeps your vacation going.

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

You sound pleased with yourself.  I ceratinly enjoy reading your journey.  So I give you something I wrote a while back on my journey.  Great news mind, body, and soul.  

 

I have seen a good part of this world.

I have met a lot of people, not like me, but like me.

Their smiles, their trials and tribulations.

I desire to move around and look.

I want to be a part of so many adventures, I do not know where to start.

I am searching for something that nobody can give me.

And that nobody can take away from me.

I have witnessed both life and death.

I am not too sure that they are so far apart.

I have seen good and bad.

And been a part of both.

I am here.  I exist.  

I looked in the mirror and it was me.

I yearn for peace.  

The peace that only my soul can give me.

Where do I go from here?

 

Robert Richards

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Vasco,

I'm delighted. 

Get a pack of our previously-discussed Pabst Blue Ribbon.  If nothing else, it will ensure hearty urine flow, but you won't care !

max

SV
Posts: 137
Joined: Sep 2010

Congratulations amigo! It's always nice to hear good news. :)

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

Thanks fellas. I will keep me busy till the next consultation. In taking the last sentence from the poem of Lighterwood, I started with a trip to the vast Alentejo region tasting the wines and local specialties. The food is great and that oblige me to forget some principals of the PCa. I can't avoid their cheeses, sausages and farm breads. Probably the bandit is enjoying as much.

I promise I will behave well. 

Thanks

VG 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Be aware that the average wealthy American would pay $50,000 or more per person for the leisurely "wine-tasting" journey that you describe....

 

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Good wine, good food.  Smile, I am.

Georges Calvez
Posts: 530
Joined: Sep 2018

Hi Vasco,

Brittany is famous for its butter which is used in rich cakes like this Kouign Amann.
https://www.davidlebovitz.com/long-live-the-k/
Patisserie aka posh cakes is somewhere between an art form and a religion in France.
The local diet is satirised in this T shirt!
https://www.spreadshirt.fr/shop/design/breton+pur+beurre+t-shirt+homme-D...

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

 

Should I say that the doctor was right last June in scheduling our next appointment to Feb 2021, or is there any other reason for the bandit to keep that quiet?

The unexpected happen again. The PSA decreased to 1.55 (from 1.82 in Apr) matching the levels of 2016. The only justifiable reason for its retreat is the flourishing covid-19 event. Could the virus turn the cancer indolent?

My PSA histology since the end of ADT is summarized as follows:

May 2012: PSA=0.02, T=<0.01 (End of Eligard’s effectiveness; Starting Off-Drugs period
Aug 2012: PSA=0.02, T=0.11
Nov 2012: PSA=0.03, T=0.56
Jan 2013: PSA=0.13, T=2.52
May 2013: PSA=0.71, T=3.84 ng/ml (384 ng/dL)
Sep 2013: PSA=0.88, T=4.90

May 2014; PSA=1.20, T=341
Sep 2014; PSA=1.24, T=356
Mar 2015; PSA=1.49
Nov 2015; PSA=1.46

 

May 2016; PSA=1.59
Sep 2016; PSA=1.56, T=364
Apr 2017; PSA=1.81, T=377
Sep 2017; PSA=1.57, T=306
Dec 2017; PSA=2.05 ; T=329

 

Apr 2018; PSA=1.83
Oct 2018; PSA=1.96, T=414
Dec 2018; PSA=2.13

May 2019; PSA=1.88
Aug 2019; PSA=2.14
Nov 2019; PSA=1.95, T=375
Apr 2020; PSA=1.82

 

Aug 2020; PSA=1.55

Hard to understand but happy for the continuing this Off-drugs vacation.

Thanks,

VG

 

 

eonore
Posts: 109
Joined: Jun 2017

It seems as if the cancer and your immune system have declared a truce.

 

Eric

Josephg
Posts: 289
Joined: Jan 2013

Super news, Vasco.  Clearly, something is going right for you on this leg of your PCa journey.  I wish you continued outstanding results and outcomes.

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

Hi all,

I just want to inform those following my story on the last PSA blood test (Nov 2020) that come out as 1.98 ng/ml (T=357). This is still below the threshold of 2.5 reserved by my doctor to restart ADT. The next uro consultation is scheduled for April and I wonder if the PSA will reach such level by that time.

Meanwhile I have been fighting another war against my android phone and windows computer. Both decided to behave badly, broking down, probably due to digital virus, which shut me down from this forum for about one month. I got a new phone but kept the computer, but I also won the war against the android and managed to get my old Xiaomi operating nicely.

Covid19 is flourishing in Europe. Fortunately I got a negative PCR test for three genetic materials identifying the SARS Cov1 and Cov2. I hope you all are fine.

Best,

VG 

SV
Posts: 137
Joined: Sep 2010

If you still have a PSA score doesn't that mean that some cancer still exists somewhere? If so, will it show up in a scan and what can you do about it? Can your body's immune system eventually kill whatever is causing the PSA score?

Best of luck amigo!

Josephg
Posts: 289
Joined: Jan 2013

Welcome back, Vasco.  You were indeed missed.

Good news on your PSA, allowing you to remain on your hormone vacation.

Clevelandguy
Posts: 690
Joined: Jun 2015

Great news Vasco, hope you stay below the 2.5 limit.  Have a safe holiday.  We are struggling in the Cleveland, Ohio area with Covid also. Vacines could be in peoples arms literally by early next week If the FDA approves today.  End in sight?........

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Wow.  Fixing the technology and whooping the cancer.  What a come back.  I was wondering where you were.  Glad for your good news.  Keep posting.  Your test tube has been put under the burner a lot.  You have a wealth of knowledge and the ability to put words on paper so that it can be understood.  Best of luck on your journey and to all who have tasted this battle, but will not give up.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Vasco,

Delighted that your PSA is holding below threshold set by your oncologist.

FDA approved Covid vac for US today.  Doses should start being administered tomorrow (Saturday), and began LAST week in England.    The Pfizer version is rated at an astonishing 90% effective (to be considered a useful vaccine requires about 70% efficacy).  I have asked my doc to qualify me for early application, due to status as immune compromised.

My state of SC is testing positive at about 20%, but of a population of 5,210,000, a total of 4,332 deaths have occured:   In other words, 1 in every 1,202.   The news rages hourly about 'surges.'  But they never report the liklihood of death in the general population, which is profoundly low.   Nationwide, the mortality rate is usually reported at about  00.2 %, which is a bit higher than the figure here.   Newspeople know that "what bleeds leads."   They focus on "surges."   I focus on 00.2 %

 

eonore
Posts: 109
Joined: Jun 2017

Using your logic of total population, .2 percent mortality rate would equate to over six million deaths in the US.  I'm glad that 4332 deaths makes you happy.  Myself, I am profoundly saddened and grateful to the press which accurately reports on this scourge.

You also forget that even among those who survive, many are profoundly sick, and some are left with long term heart and lung damage.  Why don't you listen to the doctors and nurses who deal with the disease on a daily basis, and see what they day about the seriousness of COvid.  Or are they in on the scam also?

 

Eric

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Thankfully, your more precise math assists my point, given that fewer than 300,000 have died of COVID in the US.  The final death rate will undoubtedly prove miniscule compared to dozens of other common maladies, but no death is 'irrelevant.'   When the WHO or CDC states that PCa is ordinarily very treatable with very high survival rates, they are NOT therefore saying that the tens of thousands of deaths annually from PCa are 'irrelevant' or a cause of 'happiness.'  My 'logic' is simple and the most relevant numeric, eliminating hysteria and virtue-preening.  And, the standards between states varies a lot, whith many areas at many times writing Covid as cause of death in anyone who tested positive, regardless of the effects of serious comorbities, statistically which almost all fatalities have manifested.  The actual death rate from per se Covid is undoubtedly a fraction even of the low numbers reported.

It is a total corruption and prejorative to say that I in any way suggested that 4332 deaths made me 'happy.'   Death is universal, and diseases and epidemics also.   What I suggest is perspective and objectivity.   This is the way public heath is supposed to be run and analyzed.   CDC and NIH suggestions have swung back and forth wildly, often directly contradicting themselves.   Many scientists and leaders have suggested that the hysteria is counterproductive and without justification.   You use sterotypical denigration of anyone who questions mainstream suppression of free speech and livlihood to cow the population.

Besides deaths, I also regret dramatic spikes in suicides due to isolation and loss of jobs and homes, failures of business. etc.    Political leaders who impose these things are commonly shown ignoring their own dictates at events.   

I myself for years have had lung fibrosis, asthma, anemia, and immunological compromise from multiple cancers and long-term chemo combinations, so I am conversant in side-effects.   I am not worried about this at all.   I use common sense and reasonable precautions;  I do not need multi-billion dollar public service announcements to teach me to wash my hands or avoid the public when ill.    Finally, I have never denied the reality of COVID as a pandemic, and actually do not know of anyone who has or does.  It is a real virus with real consequences.  If you know of some public figure who is a 'COVID Denier,' tell me the name, as I myself am unaware fo such persons.

Clevelandguy
Posts: 690
Joined: Jun 2015

Hi All,

Very strange virus,some people show almost no symptoms and to otherwise healthy people it's fatal!!  Keep wearing your masks and stay at least 6' apart.  Hopefully the vaccine will knock the virus to very low transmission levels. Lets pray this is a 100 yr. occurance and we won't see the likes of this or something else for a long,long time.  As Rosanne Rodanadana said it's always somethin.  I'm ready to get back to normal..................

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Rosanna also ended every skit with the following:   "Never mind"

Old Salt
Posts: 806
Joined: Aug 2014

Vasco is BACK! Good to see that the PSA appears to be steady. Enjoy your ADT vacation and best wishes to all forum members.

With respect to smart phones, in the USA one can get a very good deal on the updated iPhone SE (2020).

I got mine (NEW; 64 GB) for $250 from Consumer Cellular. Unfortunately, I am reasonably sure that this company doesn't operate in Europe, but maybe there's a similar company.

VascodaGama's picture
VascodaGama
Posts: 3367
Joined: Nov 2010

Hi all,

I am pleased to inform on my continuing "Observation" period (ADT vacations) with a PSA of 1.95 ng/ml of last week (Apr 2021). This is similar to the previous tests showing a sort of plateau along the last 24 months. I had today a consultation by phone (VIP style) with my new doctor (Dr. Jose Dias) that is substituting the previous uro-oncologist who has been moved to a different department. He gave me the perception that he is aware of the details of my PCa case. He said that the PSA was in a stable condition so that to continue this observation status. I inquire on the need of any preventive image study (BS or MRI) to which he replied in being unnecessary as I am asymptomatic. He recommended to continue the periodical PSA tests (including other markers too) and scheduled the next consultation for February 2022.
This vacation period is on its way to become ten years free of drugs and free from the symptoms that these would cause. I think I am fortunate.

Meanwhile I had the first shot of the Pfizer vaccine and got the second dose scheduled for May 5. The mRNA vaccine didn't cause any apparent side effect so that I am hopeful that the second shot follows a similar pattern. In any case, there has been news from Israel informing on several cases of heart inflammation in people that took the second shot of the Pfizer.

I want to thanks the many participants in this forum for the excellent comments they provide in their posts to fellow visitors. Thought I do not write much as before, I continue visiting the forum everyday and read all the new comments. Somehow my orchard and veggie garden has taken all my free time.

Best wishes to my comrades.

VGama 

 

CMO2021
Posts: 36
Joined: Feb 2021

VG Glad to hear everything remains stable.   Your sharing and insight to this disease is greatly appreciated by this PCA newbie.

Best regards,

CMO

Josephg
Posts: 289
Joined: Jan 2013

That is great news for you, Vasco, and I am so happy for you.  I will toast your great news tonight with a glass or two of red wine.

We on this PCa Discussion Board greatly value your knowledge, perspectives and sage advice.  I know that I always await your reply after each of my updates with great anticipation, as I want your perspective on each stop along my PCA journey.

Your orchard and veggie garden certainly deserve your time, as they are clearly an integral part of your daily quality of life.

I continue to wish you the best of outcomes on your PCa journey.

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