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2-14-2015 Oncologist Update---Happy Valentines Day---I am on HT Break

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Posted 2/14/2015 4:53 PM (GMT 0)
THIS PLAN DOES NOT WORK FOR EVERYBODY, IN FACT NOT MOST OF YOU AND MAY CREATE DEBATE. BUT IT DOES WORK FOR ME AND MY JOURNEY WITH PCA

The meeting with my Onco yesterday was a lengthy and very involved discussion. We met for about 45-50 minutes and discussed every aspect of my treatments, tests, results and prognosis.

I am going to do a little recap for those that may find this thread for the first time.

Diagnosed June 2009; surgery September 2009; SRT December 2009; continuously rising PSA until February 2014.

My PSA was never undetectable. It rose to a high of 92.5 before a scan found 2 involved lymph nodes. A C11 scan found 2 more nodes.

I started Lupron and TAK 700 as part of a clinical trial in FEB 2014. I was removed from the trial with the TAK in AUG 2014 because of a rise in PSA. I have been on Lupron for 1 year and my last test had my PSA at 7.02.

My Onco feels that my PSA has flat-lined for the last 6 months. My most recent scans still show no bone involvement and regression or resolution in the nodes with no new ones showing up.

So I am taking a break from Lupron. I will be tested again in 6 weeks to get a new baseline of PSA and testosterone. 6 weeks later I will test again and meet with my Onco. Then we will go on 3 month testing or more if I desire.

Currently I am in a diagnostic clinical trial at the NIH and will receive another F18 bone scan and soft tissue scan in 4-6 months. I may even fly to LA or AZ for another C11 scan.

We have set a predetermined threshold of my PSA, at which time I will go back on Lupron or take a look at some of the new developing drugs that are coming to market.

I am not putting this threshold number out there, because quite frankly it would scare the crap out of most of you. But this plan works for me.

We discussed very deeply that my cancer does not appear to be of an aggressive nature. It took it 4+ years before the nodes showed up on scans.

Of course any or all of this plan can be changed at any time if there are any new developments. I do not have my head in the sand about Pca. Anyone who has been here for a while knows that I have been very diligent in research, discussion, testing, etc. I have followed the path of many here for almost 6 years and learned from every persons journey.

My plan is and will always be about living with this crud while maintaining as great a QoL as I can for as long as I can.

Every Day is A Bonus, I have lived my life this way for as long as I can remember. I strive every single day to choke the life out of each one I am given. I approach each day with the thought that I will experience something that brings me joy or I will bring joy to someone else.

I have no desire to have a shortened life because of Pca. But I do have a desire to live every day. I do not strive to just see the sun come up each day, but do strive to be able to LIVE each day.

That's my story and I am sticking to it, at least for now,

Sonny
Posted 2/14/2015 5:01 PM (GMT 0)
It won't scare us, and probably would help some, me for example. Whats the threshold?
Posted 2/14/2015 5:09 PM (GMT 0)
Sonny your way of thinking is much like mine! I too would be interested in your number, but also respect your wish to not share it. I'm guessing around 20.0. My email is available if you like.

Cheers, Doug
Posted 2/14/2015 5:09 PM (GMT 0)
Great news on getting the break.
Here's hoping it's a long one.

Go live some life,
Andrew
Posted 2/14/2015 5:45 PM (GMT 0)
Sonny,

Thank you for the update. It is always interesting to read your posts as you always thoroughly research your treatments and describe your reasoning.

Based on your experience, do you have any recommendations for other G7s (4,3) just starting down the PCa path? I'm not looking for you to second guess your treatment choices, I am wondering if since the time you started have treatments changed enough that new alternatives may now be considered? (Example: For G6s and low grade G7s, AS is much more conventional then it was 6 years ago).

Thanks for your insights.
Posted 2/14/2015 6:08 PM (GMT 0)
The threshold we agreed on would be about half my highest number or about 45.

If I were to be going through this today I might look harder into seeds. At the time I was the caregiver to my wife who had been dealing with cancer. Surgery allowed me to be gone for about 8 days. Seeds and radiation would have meant about 6-7 weeks away from home. Her health would not have allowed her to travel with me. The day I was diagnosed she was put into a drug induced coma that lasted 8 weeks in ICU. She passed away almost exactly 3 years from the day I was diagnosed. Surgery allowed for a quick recover and I was there for her completely for those 3 years.

Sometimes we are faced with decisions that have to take more than ourselves into view.

Sonny
Posted 2/14/2015 6:13 PM (GMT 0)
Thanks for sharing all that Sonny. I don't think anyone understands our reasons but ourselves, at least initially. Thanks again!q

Cheers, Doug
Posted 2/14/2015 6:31 PM (GMT 0)
Sounds like a good plan to me Sonny. I have learned to love any break that I get from HT. And in all reality it is up to each of us to make the choices that we are most comfortable with.
Michael
Posted 2/14/2015 7:43 PM (GMT 0)
Sonny, I've read your comments about your philosophy on living each day to the fullest before. And thank you for repeating it. It is what I aspire to and hope I can get there some day
Posted 2/14/2015 8:21 PM (GMT 0)
Sonny, thanks for sharing. You have always been diligent in your PC journey. And knowing you, I know you are living life to the fullest.
Posted 2/14/2015 9:45 PM (GMT 0)
Sounds like a plan, Sonny...good for you!
Posted 2/14/2015 11:21 PM (GMT 0)
Once again I thank you folks here at HW for your support. I know that this whole plan is thinking outside the box and I appreciate you not taking me to task for it.

I love this place,

Sonny
Posted 2/15/2015 1:56 AM (GMT 0)
Sonny, look at the guys who posted, tells me something! Cudos!

Cheers, Doug
Posted 2/15/2015 5:31 AM (GMT 0)
Sonny:

Thanks for the update.

Enjoy your HT vacation. Mine was too short, but nice while it lasted.

Interesting that your doctor said yours was not an aggressive PC. As you know, in many respects my journey has mimicked yours (we had similar stats and we both failed surgery and srt and we have done HT).

Based on my PSA, mine is aggressive. But, based on the lack of Mets, it may not be. Any insight?

One query: if METS show up(hope not), would that trigger HT?

Mel
Posted 2/15/2015 1:07 PM (GMT 0)
Mel, you can have low PSA and mets and vice versa. I'm not sure if I would agree that PSA alone is a yardstick for aggressiveness. Mets being detected would certainly trigger some form of treatment and HT would certainly be high on the list. Don't recall your stats offhand so just thinking out loud here.

Cheers, Doug
Posted 2/15/2015 4:47 PM (GMT 0)
Doug:

You are not contradicting my point.

I had a very fast-rising PSA (PSADT about 6 weeks). That certainly implies an aggressive cancer.

Yet, no METS.

I think worse might be a low PSA/PSADT but a bunch of Mets since there are some strains of very aggressive PC's with low PSA.

My PC has been very hormone sensitive...for now.

It's hard to pigeonhole this in terms of aggressiveness.

I'm just wondering what Sonny's game plan would be if more METS showed up.

Mel
Posted 2/15/2015 4:57 PM (GMT 0)
Yeah Mel, I've got the low PSA, relatively speaking, and mets, my PSADT was around 3 months prior to Orchie.

Cheers, Doug
Posted 2/15/2015 6:17 PM (GMT 0)
Sonny,

I really liked getting that Lupron holiday. I hope yours is long-term. Sounds like a good plan is in place.

Yeah, if I hit that PSA level I would freak out, but my uro, onco, and me agree on the 50% logic, and are using that.
Posted 2/15/2015 6:37 PM (GMT 0)
Mel, you are absolutely correct.

I own a lot of baseball hats and not one of them say "Dumbass" on it.

If something new shows up or there is any kind of rapid growth in the nodes that I know about, I will back my arse up to the needle in a NY second. I have no desire to put my future Bonus Days in jeopardy. I have no desire to leave this earth before I have to. And I will go out kicking and screaming.

But for the time being, I will leave it alone as long as it leaves me alone. I have been fortunate, I believe, that I have never been one to angst over PSA test results. They just are what they are in my world. But I will monitor closely and respond accordingly.

Additionally, I am lined up for about 4 or 5 scans in the next six months. These will allow me to monitor things very closely.

The one thing I will be researching deeply in the next few weeks, is how many or how much scanning is too much and when do I reach the threshold of "OK" that's it, no more scans for you.

Sonny
Posted 2/15/2015 7:00 PM (GMT 0)
sounds like you have a great plan sonny...Believe me...I wish I could take a HT break myself just to remember what it feels like....best of luck to you.
Posted 2/15/2015 7:28 PM (GMT 0)
Mel-As far as aggressiveness...I think Gleason 7s can be a bit more of a risk taker than say a Gleason 9. For example, I don't think I could have my psa go really high without consequences...unlike others that might be able to buy some quality time off HT and let the psa rise to higher levels...

Sonny--I can't remember...have you and/or your docs talked about adding Avodart in the off season to increase the time off HT?

Doug-just reread your signature...man, you've had some tough decisions to make followed by some tough treatments...good for you though....
Posted 2/15/2015 8:20 PM (GMT 0)
I am having a tearful HT-fueled moment.

I read this thread and I tear up. I so greatly HATE the distraction to our otherwise fine lives that PC causes. Look at all the time and effort we ALL spend analyzing this tx./strategy and this/that road to take in this battle that we never wanted to have.
'
Sorry -- I just HATE this friggin' disease!

End of rant

Mel
Posted 2/15/2015 8:57 PM (GMT 0)
Mel,

Sometimes I wish PC was more of an exact science without so many options. Like if you would break a bone...treatment-put a cast on it...there is no debating among patients on that...

Hang in there, Mel..I am glad that you guys and gals are out there...

Jerry L
Posted 2/15/2015 9:35 PM (GMT 0)
Mel, just rant away brother. We all need it once in a while.

I guess that my approach to this is dramatically flavored with my circumstances in life.

One has to be my approach to life itself. There ain't a farkin thing is this world that I can do about having Pca except to give it the attention it requires and be as pro-active as I can.

Two is the circumstances in my life when I was diagnosed. My late wife had already been dealing with her cancer for 3 years when I was diagnosed. My journey thus far is a minor inconvenience compared to hers. In her first 3 years she had been through major chemo therapy that killed her entire immune system in preparation for a stem cell transplant. And then the transplant that kept her in isolation for 60 days. She was on pain meds from the time she was diagnosed until she passed. Constant drug changes and so on. She was 5'11" for most of our 30 years together until the last year. Compression fractures to her spine left her just barely over 5'4" when she passed.

My journey has no comparison to that. I have had just short of 6 years dealing with this and for almost all of it I have lived the life I always had. A career in college umpiring, outdoor sportsman and constantly active.

Thirdly, while I would rather not have cancer, look at the wonderful people that have come into my life because of it. I have shared in-person times with about 100+ people that I have met here on HW. Some of those are friends that I will have for life. Many of them I share phone conversations with on a daily or weekly basis. These friends have filled holes in my soul I did not know existed until I met them.

We go through life calling many folks friends, but what we truly encounter are "Situational Acquaintances". Deep and abiding friendship comes along very seldom. I have found more of those folks in the last 6 years than in the previous 60.

So while I agree with you that this crap sucks, I refuse to let it rob me of enjoying each and ever day of the blessings that have come my way.

That is not to say that my approach may not change if or when I encounter much more dramatic physical changes, but for now I can't let that affect me. I just can't waste today worrying too hard about tomorrow.

It is just me, but that is the way I have to LIVE,

Sonny
Posted 2/15/2015 10:06 PM (GMT 0)
Sonny:

I definitely agree. There are many worse situations, although we don't really consider that.

I understand your points.

But, understand, that while I am doing relatively well on HT, every so often it shall we say has an impact.

Very often a moodiness (HT-fueled) comes upon me. Fortunately, it only lasts a brief while (just like the hot flashes). This time, I just decided to post my thoughts.

I do admire your ability to truly consider every day as a bonus!

Mel
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