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Systemic Treatment – my experience and update

VascodaGama's picture
VascodaGama
Posts: 3356
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

 

hopeful and opt...
Posts: 2327
Joined: Apr 2009

I'm always glad to read good news; especially yours. Keep on growing and eating those veggies. In my humble opinion it is the magic that has been the stabilizing factor. 
Wishing you wonderful years to 120. 

Clevelandguy
Posts: 688
Joined: Jun 2015

Great news Vasco on your PSA numbers, I had my second Pfizer shot last week with no side effects other than a sore arm for a couple of days.   Starting to open up hear in the US with lower covid numbers being reported.  Might actually go inside to a restaurant to dine in the next couple of weeks.  Gonna be very weird to do that, have not dined inside in well over a year.  Glad to hear you are doing well and staying positive. Working in a garden is alway very theraputic to me.

Dave 3+4

Georges Calvez
Posts: 526
Joined: Sep 2018

Hi Vasco,

That is looking OK, as long as the PSA stays stable and the cancer is not doing something sneaky then you have a good chance of beating it off long enough to die of something else, which is the hope of all of us that suspect or know that the bandit is lurking in our corporeal undergrowth.
I see that the COVID-19 in Portugal is at a low as well, similar to us in Brittany where we are pretty free of the peste.
We will raise a glass to you this evening while looking out over the garden.
Cat is on full alert tonight having spotted two strange cats in her garden, she is a big cat but when the fur is up she is Corgi sized and she has a fearsome growl!

Yec'hed mad! ( Cheers in Breton )

Georges

bdhilton
Posts: 795
Joined: Jan 2010

VGama....happy things are going well...!!!

SV
Posts: 136
Joined: Sep 2010

Congratulations amigo. And thank for all of the thoughtful advice and commentary. I always look forward to reading your take all subjects here!

Old Salt
Posts: 803
Joined: Aug 2014

I join the other faithful in celebrating the good news regarding your PC status.

Your journey has certainly been unusual, at least in my eyes, but quite educational.

Thanks for the update, and be careful not to fall off that ladder in your orchard.

hewhositsoncushions
Posts: 385
Joined: Mar 2017

Well done. Can you choose me some lottery numbers too?

 

:)

VascodaGama's picture
VascodaGama
Posts: 3356
Joined: Nov 2010

Lol,

Cushions, you made me laugh. The big Euromillions never falls here. It is in the UK that the fortunates live. However, it looks like that you are in a sustainable remission for good. Congratulations for the status.

I want to thanks everybody for the comments laid in the thread. I appreciate all your wellwishes. It was 21 years ago this month when I was diagnosed with a voluminous PCa but asymptomatic. In fact the bandit has been silent along the years, much like a shadow surviving in my mind. The sequelae of the disease are noticeable but these are due to the treatments involved.

Best wishes and luck to all of you.

Thanks 

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