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Intro - Early 40's - Gleason 9 - Contemplating Next Steps

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Posted 8/19/2013 7:19 AM (GMT 0)
Hello All!!

I have been reading the boards the past week and this is a fantastic/strong/positive/honest group of folks here....thank you already. I held off this post, my first, because I'm not all fire and gusto right now and want to see if there are any men out there who decided at some point to stop hormone therapy. My background is -

Diagnosed - May 2009 at age 40
PSA 11
Next Day - PSA 11
Biopsy - Gleason 8
Bye Bye Prostate Surgery - August 2009

*Biopsy Results
*Gleason 4+5=9
*Tumor on 70% of prostate
*Spread to Seminal Vesicles
*Prostate weight - 59.2 Grams

3 Month Follow Up - PSA 4.49
2 weeks later PSA 6.94
DR. said living more than 5 years not likely

December 2009 Casodex
December 2009 Trelstar 3 month Injection
Jan 2010 PSA .12
March 2010 - Trelstar 3 month Injection (psa undetectable)
July 2010 - Trelstar 3 month injection (psa undetectable)

* Changed Dr. and Hospitals Jan 2011

Jan 2011 PSA .14
Feb 2011 PSA .4
Feb 2011 Lupron 3 month injection

** New Doctors advised radiation
** New Dr.'s don't discuss time remaining and I don't ask

Radiation (TomoTherapy) started May 2011
36 treatments total ending June 2011
PSA Undetectable until March 2012

PSA March 2012 - .3
PSA May 2012 - .6
PSA AUG 2012 - 1.8
PSA Nov 2012 - 4.98
PSA Feb 2013 - 13
Scans March 2013 - No evidence of disease
PSA April 2013 - 16
PSA July 2013 - 27

August 2013 - 3 Month Lupron Injection

As PSA rose in 2012 and 2013 I had very honest and thorough conversations with my doctors and I never felt I was gambling with my life....The scans in March 2013 helped too. I resisted going back on HT obviously and now that I am back on I want off....My issues are more fatigue and mood and less libido (none) and hot flashes (just a few a day). I have not had my follow up PSA (september) yet.

Heart disease is an issue....hereditary, former lifestyle, and stress are big issues in my life.

I never thought I would be contemplating stoping HT treatments because eventually I would find myself in some trouble with a spreading disease....and as I have heard stories of people with all types of cancer, decisions to stop treatment are much further along the journey.

I am probably thinking of this so much because I have time to think and I am early in my latest round of HT. It is still 2 months until I am faced with the next injection. I know I have options here...I don't want to treat my side effects with more drugs...maybe I will switch to 1 month shots...maybe there is an alternative to Lupron. But what would help me is to know if men say no to more hormones or am I just being a big baby about everything :)

I am leaving early for a little vacation and really wanted to put myself out there and say hello, give background, and ask my question....if anybody new is reading this, keep in mind that I am Gleason 9 and going on 4 1/2 years since first diagnosis....I'm not giving up!!! But I am thinking about my life and the quality of it...peace to all.
Posted 8/19/2013 10:47 AM (GMT 0)
Percy - I just had my second 4-month Lupron shot. So have not walked in the same shoes as you yet.

Everyone has to make their own decision, but given your willingness to do one more shot, why not make it a 6-month Lupron rather than agonize every month whether to administer another monthly shot.

If you can hang in there for a while, perhaps Intermittent Hormonal Therapy will work for you.

Lupron Jim
Posted 8/19/2013 11:21 AM (GMT 0)
Hello Percy and welcome to HW. Thank you for sharing your story with us.

There are a number of men who frequent this forum who are experiencing advanced disease and I'm sure some of them will weigh in with their thoughts. In the meantime, I just wanted to welcome you and wish you the best.

Jim
Posted 8/19/2013 11:51 AM (GMT 0)
Hi Percy, my husband is on lupron shots. We asked at last appt if this needed to be continued. She said the lupron does provide a "braking" to the cancer. It doesn't cure nor stop it but I guess there is evidence that it at least slows any growth. In my husband's case, this doesn't seem to be substantial but over the last decade without it who knows. That is what we were told when we asked.
Best of luck to you.
Posted 8/19/2013 12:17 PM (GMT 0)
Hello Percy,

Welcome to the forum. Sorry you need to be here but glad you found us.

I am also a Gleason 9. Right now I am hoping that my surgery, adjuvant radiation and two years of androgen deprivation will give me a durable remission, but ya never know...

If I do find myself with systemic disease and facing the prospect of long term palliative ADT I plan to become very interested in an experimental therapy being tried by some doctors at Johns Hopkins. It's called Bipolar Androgen Therapy (BAT) and its a bit like "intermittent" therapy except that during the off periods they jack up your testosterone to levels that would scare a body builder. The idea is that the cancer cells will have grown so many new androgen receptors during the ADT phases that they can't cope with high T levels and will die trying to reproduce.

The way I see it if I am thinking about balking at the idea of permanent palliative ADT I might as well do some science while I am about it...

Here's a paper they published from a couple of years ago. I think they are still at it.

www.ncbi.nlm.nih.gov/pubmed/20607766
Posted 8/19/2013 1:56 PM (GMT 0)
..Percy, welcome aboard my PAc brother. I see you have been at this a while but glad you joined us here at HW. We have this hard road to travel indeed and it weighs on the mind the heart and the spirit. Sometime these surgery's and or therapy's seem like torture and mutilation of the likes, I feel it too. Trying to keep your head above water is a chore and we question the worth and quality of existence. I have not been on HT that long yet and read about the side effects long term. Your concerns are valid but "Don't cut your nose of to spite your face." rings a bell. We are in this together. As One. Keep putting your thought here you are helping many others who come to read who seek refuge, companionship and advice..

.......Project Appleseed Nick......
Posted 8/19/2013 2:30 PM (GMT 0)
Percy,

You have had an amazing journey, PC-wise, the past 4 years, that's for sure.

I will only address the part of your post, that some didn't touch. The QOL part. It reaches the point with anyone living with an advanced cancer situation, where one entertains the very thoughts you have shared. Some, are bent on a mission to live for as long as they can - regardless of the cost, and regardless of other Quality of Life components. Nothing wrong with that, if one's goal is to live every last day possible.

Then you have people, that realize that no one is going to live forever, and that whatever time they have left, they want it to be with the least amount of side effects, etc. in their life. Plus those that in a terminal situation, realize that ultimately, they will simply die regardless of treatment.

Most people wouldn't want to "know" how long they have, so they avoid those types of prognosis, and I can understand that. On the other hand, while a prognosis is not written in stone (many people way out live what prognosis giving doctors tell them), a general prognosis can give a person a general sense of time left, so that they can plan out their remaining life, do things they may otherwise put off, finish business t hat needs finishing, etc, on their terms.

EOL (End of Life) phase doesn't always have to be about being in hospice, receiving mega doses of morphine, and waiting to die. For others EOL is something that can be planned for to some degree, and for those that want better QOL while they are still alive, I think that can be a very good and reasonable choice.

All of this, of course, is very personal and very subjective. My wife and I both have Living Wills, and neither of us want anything done to us, they will prolong either suffering or being kept alive at all costs. We are both comfortable with this arrangements.

My wife is a nurse, that works with a lot of elderly and terminally ill people, for years, she has told me how terrible some family members are - about forcing treatments on patients, that don't want the treatments, and how prolonging some people's lives is just short of cruel and unsual punishment. Sometimes, the family members are being selfish, and the prolonging the life of the patient is really their way of saying that they themselves, can't deal with the pending loss of a loved one.

I, for one, do understand what you are saying and thinking. And that is a choice that you and you alone have to make. I don't consider what you are saying, or what I am saying here, is in any sense of the word, "giving up". It's called making a choice, and a very personal choice at that. At the end of the discussion and debate, it is your life we are talking about here, and what you decide with your life, is your business entirely.

I wish you the best, regardless of what you decide or not decide to do. Just wanted you to see that there is another perspective on this subject. If it were up to me, your cancer would evaporate and you would live for 50 more years, but then, I don't possess such powers, lol.

David in SC
Posted 8/19/2013 2:56 PM (GMT 0)
Welcome Percy, glad you made the effort to join us. You have had a tough battle at a young age.
Although I can't relate to what you are going through, I agree with what Purg just said. It is your body and your choice and you need to make the decision for you regarding the SE.
I am 1 year out of surgery with ED and Continence issues. I have accepted that I may never be completely dry and have decided against any other surgeries to correct these issues. ED is the same. I am not where I want to be yet but, at this time, I have decided against injections. I had a long talk with myself a couple of weeks ago and acceptance of my SE has been embraced by me. I knew going in what was to be expected and I am okay with where I am. Not happy but okay. My wife supports me and is very happy I am undetectable. Nothing else matters to her.

Be true to yourself and do what you need to do for your QOL

Bill from Florida cool
Posted 8/19/2013 3:14 PM (GMT 0)
Hi Percy from a fellow G9. You've been riding a tough road and although I'm a decade older than you, I'm still in the early stages of my journey. I don't necessarily have the breadth of experience yet to provide advice. I can say that your comment about worrying that you might be a big baby isn't accurate at all. As Purg has suggested, QOL is a big part of the fight and you're right to be concerned about that.

All the best to you brother and I salute your spirit that has carried you this far and will continue to help you battle this beast in the months, years and decades ahead.

Michael
Posted 8/19/2013 5:47 PM (GMT 0)
Percy-

When I first had my PCa diagnosis, I went to see a therapist who taught me a great coping strategy called Mindfulness, which helped me deal with the anxiety and depression. It's easy to learn and with practice becomes almost automatic. It's useful for lots of things -- This week I hurt my lower back at the gym (again), and used it to get through the pain without too many drugs (I did take Aleve). It's the opposite of avoidance -- instead of avoiding pain, or anxiety, it helps me experience it fully and come out the other side more quickly. It's biggest value to me was in dealing with my cancer as it is right now, and not dealing with expectations and regrets. I also joined a prostate cancer support group (kind of like HW, but with real-time interaction), which has also been a godsend.

Assuming you get a good PSA response to your Lupron shot, you would seem to be a good candidate for intermittent ADT. This will give you periodic vacations from the side effects of ADT. I checked the clinical trial qualifications for the study that Peter mentioned. They don't allow previous ADT, but I'm wondering if you can make the case that your last Lupron shot was part of the adjuvant ADT linked to your salvage RT (I know it's a stretch, given the gap in between). Anyway, here's the contact info if you want to call them anyway:

Bipolar Androgen-based Therapy for Prostate Cancer (BAT)

And, speaking of clinical trials, there may be others that you can get in on. Dr. Logothetis at MD Anderson is arguably the top urologic oncologist in the US and is known for his clinical trials. Other innovators include Drs. Myers, Scholz, Lam, & Strum, among others. You might want to consult with one of them for a second opinion.

BTW, I think the doctor who told you 5 years is out of his mind, given that you are still very hormone-responsive and have no known mets. I'm glad you changed doctors. Also, the pace at which new therapies are emerging is mind-boggling, so if you can live with intermittent ADT, there will be many more new therapies on the way.

- Allen
Posted 8/19/2013 6:05 PM (GMT 0)
Percy,

 

Welcome to HW.  Great place.

 

There is some evidence that Continued Hormone Therapy is better than Intermittant Hormone Therapy.  Just search HW for the subject of CHT or IHT.  That said, I am currently off HT and my last Lupron shot was last October...and I am a G9 t3b and known mets.  

 

If you go down the IHT road, I would recommend frequent PSA and scans to monitor disease progression.

 

Jerry 

Posted 8/19/2013 8:03 PM (GMT 0)
Jerry L,
That was only in the case of M1 disease, which is not the case here.
- Allen
Posted 8/19/2013 9:24 PM (GMT 0)
Tall,

Now that I'm thinking about that, you are right. Thanks for clarifying that...
Posted 8/20/2013 2:31 AM (GMT 0)
Percy:

Hi brother ... I haven't been walking with this as long as you, but i can tell you how i think of it ... I'm focused on getting through the next 4-5 years; even if it's a slog (and many days it is). I'll trade 4-5 years of lower QOL for the pretty good chance that new immunotherapies and other advances will make the next 10-15 good. Not to mention that by then i'll be marrying off my daughters. In the meantime i throw everything i can at it (or at least everything the insurance company will pay for).

I'm a big fan of aggressive treatment (blow torch and pliers if needed). And i'm a big fan of Scholz/Lam in LA. They helped me go after this with multiple tools.

We're young, we've got a chance to play for the long game ...

Ray
Posted 8/20/2013 3:38 AM (GMT 0)
Except for the we're young part, I agree with SteelGuy Ray.

I have not been on ADT as long but have the same goal of milking Lupron as long as I can, then alternating between IHT and ADT.

Then hormone resistant drugs when eventually necessary as long as I can til technology advances outpace the disease.

LupronJim
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