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Welcome new member Ed-Bar - G9, mets, ADT, considering radiation therapy

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Posted 8/30/2014 2:43 AM (GMT 0)
Ed-Bar's first post was on our G9 crew thread. He's facing a pretty tough situation, and considering some options. Reposting here for more visibility for him, and for a warm welcome!

Ed-Bar said...
Hey Guys, glad I found this thread, I'm new to this sight but have spent some time on UsToo over the past few months. I was recently diagnosed in March 2014. I'm 55 years old, had a rising PSA for several years, two previous 12 core biopsys were both negative, just showed some inflamation in the second one, other than that nothing unusual, so I was convinced that it was probably chronic prostatitis. I got away from having biopsies, thinking they were doing more harm than good. I went back to the urologist after a few years when some urinary problems and lower back ache made me suspicious. 3rd biopsy showed Gleason 9 with bone mets and nodes.

Started on Lupron and Casodex immediately upon diagnosis. PSA went from 88.7 to 0.6 after 3 months and most recent PSA after 4 months on HT was 0.2. I will begin IMRT of my prostate next week to eliminate the primary tumor, seems there have been some recent studies showing a survival benefit from eliminating the primary tumor and there is a larger Stampede study looking into this as well. I guess it's a bit out of the norm considering the reluctance that I heard from my urologist but my Radonc, Dr. Stillwagon in ATL feels it would be worthwhile considering my age and health. After doing a lot of research I concluded the same. I want to do everything I can to keep the beast at bay, I don't plan on going anywhere soon, I've got a goal to die of something other than PCa. Since diagnosis I've changed my diet - no red meat, lots of chicken, fish, veggies and fruits, I excercise daily and I'm on the supplement regiment that Snuffy Myers recommends in his book.

The side effects of the HT suck, but if it's keeping me alive I'm willing to deal with it. I'm looking forward to posting with you guys for a long time to come on this site and plan on staying positive and fighting the fight.

Date PSA
7/14 0.2 T <33, DHT <5
6/14 0.6
3/14 88.7
History since 2006 high/varying PSA, 2 neg bx

Dx 3/2014 age 55
Bx 9/12 pos, 5 were G9 4+5(100%, 80%, 70%), 2 were G8 and 2 were G7
Mets to my spine, pelvis, ribs,
Mets to multiple lymph nodes

Ed

Post Edited (Redwing57) : 8/30/2014 8:08:11 AM (GMT-6)

Posted 8/30/2014 3:00 AM (GMT 0)
Hi Ed.

Welcome to Healing Well. Great place for information and support.

Plenty of guys that are walking in those same shoes so hang in there...

Thanks for checking in on our little corner of the world...together well hold this beast at bay...

Jerry L.
Posted 8/30/2014 11:58 AM (GMT 0)
Thanks Jerry,

Great to see someone on this thread who was diagnosed back in 09 and is on an HT holiday to boot! Not sure that I'll ever be able to do that (the HT holiday that is...) but it's one of the goals I have.

One question - how did you end up on Xgeva, was it a preemptive strike or did you have some bone deterioration and how did you determine that, bone density test?

Ed
Posted 8/30/2014 9:00 PM (GMT 0)
Hi Ed,

I agree with your assessment that de-bulking the primary prostate tumor (and pelvic area)with radiation may be beneficial. You may have seen the following study:
Is There Benefit of Radiation Therapy for Primary Tumor in the Treatment of Patients With Metastatic Prostate Cancer?

In light of recent evidence (the CHAARTED study) that early Taxotere has a big benefit when there are extensive mets, have you considered that as well?

I hope Lupron Jim sees this and responds because he managed to get Provenge before his upcoming radiation treatment, which I think may have a synergistic effect.

You may also be interested in my thread about Zometa/Xgeva and its controversial role in delaying PSA progression and skeletal-related events (pain, fractures, spinal compression) in men with bone mets who are still hormone sensitive. It would be interesting hearing your oncologist's response to all the conflicting evidence.

Zometa for mHSPC?

- Allen
Posted 8/31/2014 12:14 AM (GMT 0)
Ed,

Hello and welcome to our group, but sorry you have to be here.

As you may well know, we have a great number of members here that are very educated on PC and hopefully will chime in.

You will be my thoughts and prayers.

Dave in Bartlett, TN
Posted 8/31/2014 2:43 AM (GMT 0)

Tall Allen said...
Hi Ed,

I agree with your assessment that de-bulking the primary prostate tumor (and pelvic area)with radiation may be beneficial. You may have seen the following study:
Is There Benefit of Radiation Therapy for Primary Tumor in the Treatment of Patients With Metastatic Prostate Cancer?

In light of recent evidence (the CHAARTED study) that early Taxotere has a big benefit when there are extensive mets, have you considered that as well?

I hope Lupron Jim sees this and responds because he managed to get Provenge before his upcoming radiation treatment, which I think may have a synergistic effect.

You may also be interested in my thread about Zometa/Xgeva and its controversial role in delaying PSA progression and skeletal-related events (pain, fractures, spinal compression) in men with bone mets who are still hormone sensitive. It would be interesting hearing your oncologist's response to all the conflicting evidence.

Zometa for mHSPC?

- Allen

Allen I know Ed-Bar from the Inspire.com site.

Ed, the best way to explain what Allen is referring to is to quote him from another board on the "abscopal effect". His monaker is AllenE on the cyberknife board:

www.cyberknife.com/Forum.aspx?g=posts&t=5390#jumptobottom

www.ncbi.nlm.nih.gov/pmc/articles/PMC3523399/

Tall Allen has been by mentor throughout the process and advised that I should try and time my Provenge treatments one before SBRT, on e during and one after, and it looks like the timing will work out as he advised

Sep 19 First of 3 Provenge Cell Collections
Sept 22 First of 3 Profenge infusions

Oct 3 Second of 3 Provenge Cell collections
Oct 6 Second of 3 Provenge Infusions
Oct 6 First of 5 SBRT treatments

Oct 8 second of 5 SBRT
Oct 10 third of 5 SBRT

Oct 13 fourth of 5 SBRT
Oct 15 final SBRT

Oct 17 final Provenge cell collection
Oct 20 final Provenge Infusion

Welcome again Ed.

When you get a chance, please update your profile with emailID and your story.

www.healingwell.com/community/profile.aspx?f=35&m=3170294&p=204294

most of which you can cut and paste from

[url]http://www.inspire.com/EdBar/[.url]

LupronJim
Posted 8/31/2014 2:39 PM (GMT 0)
Tall Allen,

Thanks for the article, that is one that I had not seen yet but comes to the same general conclusion that the articles that I have studied does.

I considered Taxotere, but I don't want to deal with the side effects of chemo, plus I've heard varying opinions on the study, plus the fact that when the study was done some of the newer level 2 HT drugs were not available. I'll save Taxotere for a later date.

For now I'm going to take it a step at a time, remain on HT for the foreseeable future, have the IMRT done and monitor T, DHT and PSA levels regularly and go from there. Together with the changes in diet, exercise, and supplements outlined in Snuffy's book. Also added Metformin and increased my dosage of Simvistatin with my PC's blessing, trying to keep my already low LDL even lower - less food for the beast.

I am in the midst of scheduling a visit with Snuffy Myers, seems like I cleared the first hurdle in what appears to be a slow process - I completed my new patient information form that his assistant sent to me and I am waiting for them to schedule my first visit. If anyone has gone through this process let me know how long it generally takes.

Thanks for all the well wishes out there, I'm in this fight for the long haul.

Ed
Posted 8/31/2014 5:16 PM (GMT 0)
Ed,

I don't know what you've heard about CHAARTED, but in the medical community at least, I haven't read any contrary opinions. For men like you - with multiple mets and hormone sensitivity - the survival advantage is 17 months over ADT alone, whereas docetaxel only has a survival advantage of about 4 months if one waits for castrate resistance. Keep in mind too, that the newer hormone therapies like Xtandi and Zytiga only become available to those who are castrate resistant, while the CHAARTED study only included men who were not. The other consideration is that the side effects of Taxotere become less tolerable if one waits until health deteriorates. If you want to hear a presentation of the study by one of the authors, click the following link and enter "Vegas" as the password.

CHAARTED Presentation by Dr. Nicholas Vogelzang

I also would suggest that you think about the "one step at a time" approach - it is not an approach that Snuffy Myers advocates. There are many clinical trials now that are looking at what happens if we attack the cancer on multiple fronts at once, rather than sequentially. We know that the sequential approach allows the cancer, perhaps encourages the cancer, to evolve ways around it. It's too early to say whether a "cocktail" approach will work any better - there are many growth pathways the cancer can use to get around anything we now have to throw at it.

You may be interested in a series of threads I wrote about growth pathway inhibitors that are now available for off-label use. It includes metformin and statins and many others. Here's the link:

Drug Repurposing for Advanced PC

If you care to discuss these when you meet with Snuffy Myers, I would love to hear his comments.

- Allen
Posted 8/31/2014 9:47 PM (GMT 0)
Ed, the debate over whether to keep one's powder dry and only pursue one remedy at a time never giving the PCa an advance look at what else we have in our arsenal is one my original medical oncologist at University of Florida & Shands adheres to.

I was concerned that as a Gleason 9 even though I was responding remarkably well to Lupron, that I was not giving the advanced PCa the attention it deserves. So that's when I started seeing Dr Jeffrey Turner an associate of Mark Scholz and Richard Lam in Marina del Rey CA, and started on Zytiga rather than a lower strength alternate like Casodex.

To Tall Allen's point, Dr Charles "Snuffy" Myers in a few of his videos makes the point that if PCa had a hypothetical 10% chance of combating a remedy that attacks one type of testosterone production, if you attack the testosterone from two different angles concurrently, PCa can then only overcome it again a hypothetical 1 % of the time (0.1 * 0.1) instead of 10%, and with a three prong defense only one tenth of 1% of the time.

The debate will never be solved as there are merits to each argument, the counter being that if the cocktail approach fails you have less to throw at the PCa.

For me it came down to do I want to just keep buying time, or do I want to take on the beast head on.

LupronJim
Posted 9/3/2014 3:17 AM (GMT 0)
Hello Ed-Bar,
Sucks about the G9 etc, for sure, but welcome aboard, Brother! Now to kick the rotten bas**rd's butt with the best single or combo treatments available! You and your pros will need to put a lot of thought in how to attack it.

As LupronJim's post shows, a lot of big brains have different thoughts on this. And here I sit with nothing but surgery for now! shocked But that's how my brainy guy from Vanderbilt thinks we should go for now, and my local guy seems to agree, and I am with them for now. Pros and cons!

May you come to a confident decision based on some good advice!

Bill
Posted 9/4/2014 1:23 AM (GMT 0)
Hey Bill,

Thanks for the welcome. My decision was actually made when I first joined the crew, I had my second round of IMRT today - only about 38 to go ;-). Also got some good news... my second bone scan when compared to the first one when I was originally diagnosed in March showed a "decrease in the intensity of the bone mets and no new bone mets - consistent with favorable response to treatment" reads the report. So the ADT is doing it's job starving the beast and keeping it at bay while I'm also working on nuking the prostate and pelvic lymph nodes. I was pretty jacked to get the bone scan news today. Good luck to you, let us know how it goes.

Ed
Posted 9/4/2014 2:13 AM (GMT 0)
Great news, Ed. 'Favorable response to treatment' sounds really encouraging!
Posted 9/6/2014 9:01 PM (GMT 0)
Ed:

It seems like you've gotten some good advice ... one thing i noticed is that some of Snuffy's recommendations have changed since he wrote the book. For instance, Selenium and Vit E have been shown since the book to not have a positive effect. He changed his recommendations and covered it in one of the videos on his blog. I had to throw out a couple of bottles i'd just bought! There might be other changes as well.

Keep a close eye on the beast so that you're ready for what comes your way.

Regards,

Ray
Posted 9/6/2014 10:24 PM (GMT 0)
Thanks for the heads up Ray!  I only recently subscribed to his video blog, I must have missed that one.

Ed

Posted 9/6/2014 10:30 PM (GMT 0)
Hey Ray,

With the favorable decline in your PSA as of late why the chemo?  Just wondering.

Ed

Posted 9/7/2014 12:12 AM (GMT 0)
Ed:

Both of my doctors agreed that based on the CHAARTED study it was likely that a few months of chemo will buy me more months or years down the road of life maybe even remission.

Personally i'm in the "kick it while it's down" camp, so i signed on -- after a lot of consultations with my brothers here and prayer with a bigger brother, it seemed like the right move for me.

Ray
Posted 9/7/2014 12:30 AM (GMT 0)
Steelguy, you're inspiring with your full frontal attack mindset.
Posted 9/7/2014 1:45 AM (GMT 0)

BillyBob@388 said...
Hello Ed-Bar,
Sucks about the G9 etc, for sure, but welcome aboard, Brother! Now to kick the rotten bas**rd's butt with the best single or combo treatments available! You and your pros will need to put a lot of thought in how to attack it.

As LupronJim's post shows, a lot of big brains have different thoughts on this. And here I sit with nothing but surgery for now! shocked But that's how my brainy guy from Vanderbilt thinks we should go for now, and my local guy seems to agree, and I am with them for now. Pros and cons!

May you come to a confident decision based on some good advice!

Bill

Bill, my medical oncologist @ Univ of Florida & Shands is of the keep your powder dry school, one remedy at a time milk Lupron as long as you can and keep the aggressive PCa guessing what we may throw at it next.

After talking to Ray the Steel Guy, and others at the two GFMPH sessions my spouse Karen and I have attended so far, where 50 or so in total men with PCa and their partners go semi-annually (not also the same 50 and all are welcome), I decided I was not giving the G9 the care and feeding it deserves.

Both sides of the discussion have valid points, so more a matter of personal preferance, and I decided on the cocktail approach with an infinite amount of mentoring from Tall Allen on the treatment particulars, and encouragement from Sonny3, Wampuscats, WorryWarts and other Scholz/Lam/Turner disciples. All 3 in Marina del Rey are good medical oncologists in their own right and collaborate on all the cases.

Since Shands MO is so local and offers a point, counter point perspective, as long as Medicare keeps paying for me to see both, I will, and try to discern the best of each's advice and counsel. The best doctors not only do not mind us seeking second opinions, they encourage it since no one can keep up with all evolving treatments.

The ones that object to seocnd opinions tells you something too.

LupronJim
Posted 9/8/2014 4:57 PM (GMT 0)
Hi Ed, welcome. Your numbers seem similar to my husband's. We are also not having chemo but making enquiries in the US re IMRT to the prostate. It will not be given up here in Canada as the oncologists assigned to us see "very little value" despite us waving the study in their faces. We are also seeing Dr. Myers next month. So glad to hear of your latest CT scan results! That is sounding very positive. My husband has not responded very well to ADT unfortunately.
Posted 9/9/2014 12:11 PM (GMT 0)
Hey Moonlight,

Has your husband had his testosterone level checked to see if the current HT is working like it should?  Could be that he needs to change drugs.  I've used Lupron since the start and granted its only been 5-6 months but it seems to be doing the trick.  Its possible that his PSA is rising if his T is not being held in check and continues to feed the beast.

As for the IMRT hope you're able to work through that, I use Dr. Gary Stillwagon here in ATL, he was the one who first proposed the idea to me and after a lot of research I decided to proceed.  He is one of the top docs in the area and has some prestigeous credentials and is a really nice guy to boot.  One of the things that I read that helped in making the decision came from Snuffy's book on page 50 and page 82 where it talks about an MD Anderson study that looked into where hormone therapy failure initiated for a group of men with metastatic PCa and it found that more than half the time it intitiated in the prostate.  So it made sense to me to have mine zapped along with the pelvic nodes - another possible site where HT failure can initiate.  Granted, I still have the bone mets - the other site where HT failure starts frequently but I feel like I'm improving my chances.  I'm not a doc, and urge you to do your own research, but I thought long and hard about it and decided to be aggressive and go with the IMRT.

Ed

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