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Recovery from Hormonal Therapy. My latest results

VascodaGama's picture
VascodaGama
Posts: 1697
Joined: Nov 2010

Independently of the treatment one has chosen or been administered, we all will go through a period of recovery which experiences are important to know in advance by the many starting the therapy. In any case, recovery experiences from hormonal treatments are rarely reported and diverse probably because HT is usually administered in combinations with other therapies or because doctors prefer to administer the HT drugs continuously until these fail and the patient becomes an hormone refractory case, therefore with no recovery period to contemplate.

In my case the HT protocol chosen by the uro-oncologist regards for intermittent administration (on/off medication periods) which OFF period leads to recovery before reaching to a “normal” status. This choice is better than continuous, particularly for those suffering nasty side effects from the drugs or from the hypogonadism status the treatment causes.
In my case the OFF drugs is done merely because of the prolonged control on the cancer it provides. But one may also be fortunate for the relief from the side effects and return to normal function of the other “body parts” affected. This includes avoiding the risks for cardio and diabetes complications.

Nevertheless, it is noted in a recent study that HT on intermittent application is not better than continuous; however the conclusions of the study in my view are based on protocols inconclusive of the whole benefits. They could not assure that patients would recover from their hypogonadism status completely. No testosterone tests were executed but instead preferences were given to a fixed period on/off drugs.
Here is the link to such reference; http://csn.cancer.org/node/241249

I started HT in November 2010 with a protocol for intermittent administration on mono blockade with 6-month shots of Eligard. The on/off “switch” is controlled through periodical PSA values, testosterone tests (to confirm castration levels) and symptoms. The ON period required remission levels (PSA less than 0.05 ng/ml) for at least 12 months. In my case it took 18 months for the achievement.
The OFF period is expected to last until one gets to a certain threshold PSA value depending on the previous diagnosis/treatment histology of a patient. In my case the threshold is set to PSA=2.5. This is when I will return to the treatment, starting with bicalutamide and leuprolide.

I would like to note that this protocol is recommended by many renowned oncologists, experts on the administration of hormonal therapies in PCa cases.
My doctor commented that I may get different drugs depending on what is available at the time of restarting HT. I am hopeful for a long vacation period (over 5 years) and then start with newer drugs that better address intratumoral activity of cancer cells such as; the antiandrogen enzalutamide (MDV 3100), the CYP17 inhibitor abiraterone (Zytiga), or CYP17 inhibitor orteronel (TAK-700).

You may follow the chronology of my treatment and tests (PSA, etc) in this link;
http://csn.cancer.org/node/236528

Here I want to report on the recent achievements of the treatment which is now at the 3-month mark since starting the OFF-drugs period.
My last test results of August 2012 come as;
PSA =0.02 ng/ml and Testosterone = 0.11 ng/ml (11 ng/dl).

This is a continuation of the remission level (lower than 0.05) while a small increase of testosterone become apparent from >0.1 to 0.11).
I do not know if such is common but the PSA could be expected to be maintained for the still castration levels of T which is lower than 0.3 (30 ng/dl). My body has not yet recovered to normal levels of testosterone. However, symptoms all indicate improvements.

During the ON-drugs period, the side effects were numerous but mild being fatigue the one most annoying. Some effects were present but unnoticed. Now three months since the end of drug’s effectiveness I can identify additional effects that I thought being a cause from other factors.
One example is the rheumatism/arthritis like symptoms which existed in the whole joints but suddenly (one month ago) start disappearing and now have gone completely.
I also feel more energetic (fatigue is down to 2 in a scale of 1 to 10) and the testicles are bigger. The penis continues smaller though. Mood changes are lesser and I sleep longer with lesser wake ups for peeing. I turned to be calmer when confronting people (my wife’s comment) and I am getting thinner but the boobs are still noticeable. Overall I feel much better. I still have occasional hot flashes. Surely the symptoms are all indicative that the “T-factory” (testes) is in operation again.

I feel fortunate for the positive response to the treatment by the cancer and my system. I also have no prostate in place producing serum from benign tissue, which makes the case more impressive.

One note on the drug effectiveness (Eligard-leuprolide acetate); This LHRH agonist has a short half life period of 7 days, therefore the drug’s “power” losses the effect just after the end of the period of effectiveness of the shot (in my case was 6 months). However, what causes the majority of symptoms we experience is the condition on castration due to stoppage of the “factory” (the testes). To start fabricating testosterone, the testes require signalling from the pituitary. This function differs from person to person but many report on periods lasting from two to twelve months. In some cases the system does not recuperate at all subjecting the patient to a permanent condition of hypogonadism. This is scaring and many need TRT treatments.

It is yet too early to confirm success but the last results are showing that all is working in my favour. Today I commemorate the 12th year anniversary as a survivor from the surgery done in August 15, 2000.

Some guys wishing to get a relief from the symptoms should discuss with their care team on the possibility of going OFF-drugs. However keep it in mind that one may respond differently in each situation.

The best to all.

VGama

hopeful and opt...
Posts: 1442
Joined: Apr 2009

Thank you for your informative post.

I am glad that you are doing better during the last three months. I hope that this phase of treatment will last a long while with continued good effects.

Enjoy the good moments of the day.

My good thoughts and prayers are with you.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Vasco, thanks for a very frank and informative update. I hope everything continues to progress smoothly.

mrspjd
Posts: 694
Joined: Apr 2010

Early congrats are in order, also, as all the data you've shared indicates the road to remission during this 1st ADT "holiday!"  I predict your T levels will continue to rise to a normal range over the next 6-12 mo period, perhaps sooner, with PSA holding below the critical threshold.

Re your comment "In some cases the system does not recuperate at all subjecting the patient to a permanent condition of hypogonadism."  In addition to all the other good reasons you reported, IMHO, this is the key to why IAD of =/<18mos is better than the =/>2yr length of time often recommended for ADT.   There seems to be a better chance of testosterone recovery and avoidance of permanent andropause (hypogonadism) @ 18 mos or less.   While anecdotal, this is discussed in Chuck Maack's comments re the advantage/benefit of IAD vs CAD on the link you provided and is consistent with the writings of expert PCa MDs like Strum & Meyers.  Although, I'm sure there are some who remain on a 2 yr ADT protocol and also have recovered T levels when on ADT holiday (off cycle).

Thx for the detailed update. Best wishes for a lengthy holiday. Cheers to your continued good health & positive outlook on life!

Samsungtech1
Posts: 350
Joined: Jan 2011

Vasco,
I am really happy for you. Great News! Thank you for sharing this with us. Unfortunately I haveno wine in the house, but will go out tomorrow and buy a Portugese wine to toast your success.
I think Dr.s in Europe are more into experimenting, whereas in this country they are so afraid of being sued they follow the chosen paths.

Great!

Mike

hunter49
Posts: 204
Joined: Oct 2011

Glad you are doing well my friend. Keep up the good fight. Yuo are a pillar on this site.

fightn9er
Posts: 13
Joined: Aug 2012

I have been reading and researching now for 3 days now. It seems to help the nausea of being a 3 day old survivor (Dx 8-17-12). Knowledge is the most important key to making a good and possibly permanent decision to halt or slow my monster. VGamma you and all others like you that have posted personal experiences regarding treatments / side effects, successes and failures have been a "saving grace" to me and others like me.

To all: Keep up the posts they are extremely helpful. Especially to new board members like myself. I will keep new threads going as to my experiences as well.

Mike

alinur
Posts: 12
Joined: Dec 2011

Inspiring us, encouraging us.that is all your purpose.Enjoy life VGamma.
God bless you.

mattmans5
Posts: 70
Joined: Jan 2011

as your name implies a seeker ...... of information , hope to continue to read your imformative posts

thank you

joe

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