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How will ADT change my life

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020
Hello:  I am new to the site. I am 71 and had a radical proctectomy 3 years ago. Cancer stage 3, Gleason 9.  This was followed 1 year later by radiation. PSA went to zero briefly.  Now after 3 years PSA is 0.12.  It appears to be doubling every 6 months.  A very recent CT scan showed an 8mm lesion on vertebrae T10.  Not yet determined if benign or otherwise, could be metastasis.  They want me to go on ADT which I have been reluctant to do. I am otherwise physically very healthy.  I go to the gym 4 times per week doing both weights and cardio.  I golf 80 rounds per year.  I still do mountain hiking in the summer and skiing in winter.  What quality of life change from these activities can I expect.  What changes did you experience to your energy levels, your physical strength, endurance and your appearance and emotions.  Did you find a significant or minor change in your abilities and quality of life.  Are you happy with the decision to do ADT.  I would like some honest feed back, not sugar coated, to help me make some decisions going forward.  Should I do ADT or explore other options that might be tried.

 

Here is what I am thinking now, not questions that you can answer.  Under all the circumstances, I am happy with my life right now.  How long could I go on like this if I did nothing before the cancer started to take its toll on me physically and I succumb to it.  How long does ADT stave this off and at what expence to quality of life.   

 

Thanking you all in advance 

 

VascodaGama's picture
VascodaGama
Posts: 3224
Joined: Nov 2010

Hi Ron,

Welcome to the board. I hope my comment helps sorting out some of your doubts, however, each PCa case is different and so are the symptoms and results from the treatment.

ADT is palliative therefore it does not cure or kill the bandit, but it manages some control providing a delay on the spread that can last years. The protocol (number of drugs used) and ways of administration are also important aspects in the decisions so that one should better get the opinion and be followed up by a medical oncologist experienced in PCa treatment.

The typical ADT protocol involves chemical castration with LHRH shots of Lupron (or similar drugs). This leads to hypogonadism and its infamous symptoms. The intent of Lupron is to eliminate the production of testosterone (T) in circulation that is feeding the cancer. A second drug taken alone or concomitant with LHRH drugs is an antiandrogen like Bicalutamide that blocks the androgen receptor (mouth of cancer) in cells, prohibiting the bandit from absorbing T. Additional blockades exist but those are usually taken when the initial ones stop working.

Many doctors prefer to administer the treatment continuously till refractory is reached, However, several famous oncologists treat intermittently (on/off drugs periods) to allow a relief period from symptoms and risks. Intermittent administration also permits to extend the period of these drugs action before a patient gets to refractory.

ADT causes chronic fatigue, mood changes, impaired vision, low libido, unpleasant gynecomastia, accumulation of belly fat, health hazards, etc. In some guys the symptoms become nasty so that oe needs additional medication to treat the symptom. In my case of 18 months in Eligard (same as Lupron) mono administration, I experienced numerous symptoms but most mild. Fatigue and loss of libido were the most annoying ones. Before the treatment I was fit, golfing on week-ends and jogging over 5 KM daily, but during the treatment I couldn't walk 2 KM without a rest. Surely at the time I was younger with 63 years old and my cancer was a lower Gleason score 6. You can read my story in the links of this link;

https://csn.cancer.org/node/314326

ADT drugs are linked to several bone loss and issues. Several guys with osteoporosis have to add a bisphosphanate to the protocol. In your shoes I would get tested (Testosterone, PSA, Full blood panel, dexa scan, etc) before starting ADT. I recommend you to consult a medical oncologist experienced in PCa treatment.

Best wishes,

VGama

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Thanks so much VGama.  Great informatio.

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

My family has a history of osteoporosis, my dad had it. That is why I  liked to do weight work outs, which I have for years.  Do you know if people still have the energy to do that?  Would I likely experience muscle loss despite weight training?

Georges Calvez
Posts: 458
Joined: Sep 2018

Hi Ron,

It is very difficult to say how ADT will affect you, some men have relatively mild reactions and others find it very difficult.
I did nineteen months on Firmagon plus another six months of declining side effects.
It was a bit like having flu in all. One of the nasty things that got me was stage 3 hypertension. Now I am off the Firmagon my blood pressure has declined back to normal.
If you have other options then I would save ADT until it is the last shot in the locker unless it is short term in combination with radiation or another treatment.
Once you have stepped onto the palliative ADT path it is only a matter of time before almost all men move to castration resistance.

Best wishes,

Georges

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Thank you Georges. 

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Is there a general lenght of time before ADT loses its effectiveness?

Clevelandguy
Posts: 583
Joined: Jun 2015

Hi,

I would find out what drug(s) your doctor wants to put you on then research and find out what the side effects are.  If you know what the drugs are you can then ask people here who have used them for their opinions.  Good advice from the people above............

Dave 3+4

 

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Smile

Josephg
Posts: 228
Joined: Jan 2013

Welcome to the Forum that nobody wants to join.  Lots of great folks here, who like yourself, are living the journey with prostate cancer (PCa).  None of us are medical professionals, so we can't and won't advise you from a medical perspective.  We are, however, experts in patient experiences for our own PCa experiences, and we freely share our experiences, so that others can take these patient experiences as additional data to assist them in making PCa-related decisions for themselves in their own personal PCa journey.

Many of us are living parallel PCa journeys to you, though no two patient PCa journeys are exactly the same.  We started with a radical prostatectomy, which ultimately failed.  Then, we had radiation therapy, sometimes delivered with simultaneous ADT therapy, which ultimately failed. These two treatment therapies were performed with the objective that the PCa could be completely eradicated, resulting in a cure.  If these two therapies failed to eradicate the PCa, then there are currently no other established weapons in the treatment arsenal to provide a cure for PCa.

So, for all practical purposes, you are at a crossroads on whether or not to continue the fight against your PCa.  You could continue the fight through palliative therapies, or suspend the fight and let the PCa spread throughout your body in whatever timetable it may progress at.  A stark choice, but you already know that.  The general concensus is that ADT extends a PCa patient's life, and most patients who undergo ADT therapy, side effects included, also receive an extended quality of life, and at the end of the day, your quality of life is a very important consideration.

Vasco, who is one of the Forum's leading PCa patient experience Gurus, answered your question in his usual outstanding level of detail.  Some side effects are temporary and will resolve within 6 months to a year after ADT is stopped.  Some side effects are permanent; however, the severity of side effects, the length of time to resolve, and which side effectrs could become permanent, can differ substantially from patient to patient.  There is no one size fits all.

For me, I had ADT (Lupron and Casodex) in conjunction with my radiation therapy, and I was on ADT for 6 months.  I had both temporary and permanent side effects resulting from my time on ADT.  I would tell you that I was still able to achieve a perfectly acceptable quality of life while on ADT, and if/when the time comes for me to begin palliative ADT therapy, I will do so willingly.

I have posted my experiences while on ADT, and if you choose to peruse them, you can find them at the links below.

http://csn.cancer.org/comment/1414101#comment-1414101

http://csn.cancer.org/comment/1414282#comment-1414282

http://csn.cancer.org/node/299431

If you wish to see my side effects history, you can view them at the link below, and scroll down to my January 17, 2020 update.

https://csn.cancer.org/node/299431

I wish you the best of outcomes on your PCa journey.  Last, but not least, we are always here for you.

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Thanks Josephg and all others. Great info

Georges Calvez
Posts: 458
Joined: Sep 2018

Hi Ron,

That is crystal ball stuff.
Some men see the PSA fall and start rising again after as little as a few months.
The average length of time is about two years.
Some men just go on and on, I know of a man on another forum that has done five and a half years on degarelix with no sign of resistance setting in and he is not unique.
There are quite a few theories as to how the cancer gains the ability to thrive without androgens, it is possible that there are a number of pathways that are used by different cell lines.
If it was possble to block this then ADT would be a very powerful therapeutic tool in all advanced cases.

Best wishes,

Georges

eonore
Posts: 92
Joined: Jun 2017

Hey Ron,

I am no expert on long term ADT since I was only on for six months, but in my case side effects were minimal In number.  My greatest challenge was fatigue.  However, I started ADT extremely obese and out of shape.  You are starting way ahead of the game.  I believe that while you will have to make some concessions, your quality of life and activity level will be more than acceptable.  I would go ahead with the ADT.  You can always change your mind later, but foregoing the treatment is final, particularly with a Gleason 9.

Eric

 

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Great reply. Thanks Eric

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

My family has a history of osteoporosis, my dad had it. That is why I  liked to do weight work outs, which I have for years. I am concerned about losing bone mass which I would think is not reversible.   Do you know if people still have the energy to do that?  Would I likely experience muscle loss despite weight training? Would I have the energy to still play golf

Thanks

eonore
Posts: 92
Joined: Jun 2017

Dear Ron,

Once again, everyone is different, and I suspect some muscle loss is inevitable, but I think a real strong commitment to exercise, particularly weight bearing exercise, can go along way toward maintaining what you have.  I base this on forum reports I have read in the past, along with what several doctors have told me.  As I said, some concessions may have be made, but as active as you are you should do fine.

Regarding the osteoporosis, with your family history, you should be tested before you begin therapy.  Also many MOs believe in starting bisphosphanate at the start of ADT as a prophylactic, rather than waiting until something gets worse.  Worth discussing with your MO.

Eric

Ron1949's picture
Ron1949
Posts: 10
Joined: Mar 2020

Thanks Eric

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