Oligometastases (less than 5 bone mets)– New Study open

First a technicality which as you will see is very important in my case. My understanding is oligometastatis is less than OR EQUAL TO 5, versus just less than 5.

It's just the thread TITLE since Houseboy's first sentence back in July 2011 does say five or less.

I found out only yesterday that I have 5, which is small enough quantity to hopefully qualify me into UF & Shands Metastatic Disease Program. In my case Gainesville FL is a couple hours closer than Jacksonville FL.

I see several of you have experience with Dr "Snuffy" Meyers in VA (have seen one of his videos so far) and Dr Dattoli in another part of FL.

Like all of you though we wish we were not members of this august club, I find this thread particularly germane to my situation.

Had it not been for my PSA Doubling rate, I would not even had been biopsied at PSA = 3.68 Jan 2013 (Up from 2.62 Aug 2012, 1.7 Feb 2012 and 1.6 Jan 2011). My understanding is only about 1.5% of us are PSA <10 and Gleason >8,and in my case focal metastatic disease on first bone scan as opposed to as result of recurrence.

Both my primarily Urologist, my oncologist and my second opinion urologist diagnosed me as T1CN0M1B palliative stage 4. So all jointly agreed on Lupron Depot injection in my case 4 month, not sure why it was not the more common 3 month.

Waiting on insurance approval for a PET scan to augment CT scan and bone scan to decide on Xgeva ( and now I just read there is also a patch that may come into play). Fortunately at moment I have no pain or bone symptoms other than the bone scan and biopsy results

Thanks to another site (Inspire) I tripped upon before this one, I heard about the UF & Shands Metastatic Disease Program, completed their self assessment and only yesterday express mailed all my results to apply.

So I can thank you all enough for sharing your experiences, and expediting the journeys of us newbies.

Seems like most of the material I reviewed from Shands had people who were on complementary chemo or had had robotic surgery rather than Hormone Therapy alone but I am still in early stages all new within last 90 days.

Again thankfully no adverse side effects to Lupron Depot other than the spike in nightly urination that was expected, came and went. I did not do any pre-treatment to avoid the spike and I have my first PSA reading at end of month.

So still getting educated to know what questions to ask and when, but my main question at moment has to do with insurance.

I turn 65 in August, so Medicare eligible August 1st, 2013. I am assuming Medicare is better coverage than my current retiree high deductible PPO (I have put a sizable dent in the $5k deductible and will most likely exceed it by time I am Medicare eligible).

I suspect board rules prohibit any bad mouthing of various insurance carriers, but has anyone had particularly good experience with Medicare carriers such as UHC AARP, Blue Cross, Gerber etc?

In my situation I expect I will opt for supplemental plan F and a strong plan D to go along with plans A & B. Being flooded with mailing materials at moment, but devoting all my energies to fighting prostate cancer by arming myself with the solid information all of you have graciously shared.

Welcome Jim.  So sorry you are here.  My doctors missed PSA velocity which allowed my PCa to escape the capsule before I was diagnosed.  It is not commonly known up here in Canada, notwithstanding a Study published by John Hopkins University around 2008.

Thanks for sharing the Florida Clinic site.  Of course, as you point out, the procedure goes against the conventional 'Standard of Care' that Doctors commonly refer to.  Indeed, my urologist called it "absolute craziness".  But I am convinced the procedure has extended my survival time.  I wish the same for you.

Sorry, no can help on Insurance.  I am a Canadian and our system is very different.  I am part of a Study as well - otherwise our Medicare would have never covered it, and rad oncs up here just would not radiate.

The other point on which I am convinced is the C-11 PET/CT Scan with acetate available under Dr. Almeida in Phoenix.  My rad onc noted that it was more sensitive than the conventional scans up here that missed one of my mets.

I look forward to your posts from time to time,

Good Luck

Houseboy

 

Hi Jim, sorry that you are in this position, but you have come to the right place, and sounds like your medical team is tops. One thing that is important with approach to oligometastatic disease is that you have to find ALL metastatic sites before treating them, as it would not make sense to treat 4 and miss the 5th one.

The scanning techniques that will do this are still not widely available. We are not talking about a regular PET scan. The scanning techniques that can identify mets (soft tissue and bone) are C11 CHOLINE PET, or C11 ACETATE PET, or FERAHEME MRI, or (for bone only) F18 Sodium PET. If you want to go down this road you have to search for experts and institutions that offer this, as houseboy suggested, Dr.Almeida is one of them. Dr.Myers is great oncologist, if you can afford him. Or oncologists at big research university hospitals are usually up-to-date on treatments and are conducting interesting clinical trials.

My father also had a low PSA and oligometastatic disease, your PSA was even lower and there are quite a few men who have this, in my opinion the statistics somehow underestimate the number of men with PSA under 10 and metastatic disease. We also have had a great number of guys here with PSA under 10 and T3 disease.

All the best to you, and keep us updated.

Thanks again to both of you for your insights.

I will be better prepared if and when I have my fist consultant with UF & Shands.

I think I read somewhere that only about 1.5% or us have PSA such as 3.68 and bone mets from biopsy due to PSA doubling rate that led to a bone scan and CT Scan, rather than bone scans as result of recurrence.

There's a reason the windshield is much larger than the rear view mirror (no pun intended), matters less how we got there and more where we are going now that we're here.

I have been reviewing Dr Snuffy Myers' videos, some as far back as 2011 and still very informative. In a couple he referenced Oligometastatic and the work done at Rochester in 2005 to 2007 timeframe on bone mets.

For $9, one can purchase volume 10 #8 where pages 5-7 are devoted to this topic.

http://www.prostateforum.com/back-issues.aspx

Houseboy;
Can you contact me,i have questions about treatment 403-7306534 or rongor@shaw.ca
Thanks

To make sure I should not be being much more aggressive, I have my initial consult with Dr Scholz, Lam/ Turner in Marinda dek Rey California on Monday.

My last whole body bone scan showed the mets are gone thans only to Lupron since 3-28-13 not even Casodex, nor any surgery nor radiation nor chemo not even Radium 223 or Zytiga.

Testosterone is currently 003 and PSA = 0.10 still working on the less than sign to be officially undetectible.

LupronJim

Houseboy, I was looking for your article since there is a fellow Canadian on the Inspire.com site that is G9, and I referenced your case in that thread.

/www.inspire.com/groups/us-too-prostate-cancer/discussion/gleason-9-what-to-do-next/?msg_activity=reply_posted&reply_id=5949289

I have my copy

Oligo cure -5ed2c3d29_2_paact_summer_2013.prf

but have not found the link I got it from yet.

I should also update my results.

Thanks to the sage advice of Tall Allen I elected to have 5 fraction SBRT by Dr. Chris King at UCLA concurrent with Provenge to leverage the abscopal effect.

prostate-cancer.org/abscopal-effect/

As far as I know your doctors in Toronto, Dr King at UCLA and Dr Allen Katz in NY are the only 3 doing high Gleason SBRT.

So far so good. The 5th of 5 SBRT ended 10-20-14 and the 3rd of 3 Provenge ended 11-3-14. PSA pre SBRT was only 0.05 and currently <0.01.

Last 3 monthly PSA's have been <0.01, = 0.01 and = 0.0 yesterday which is impossible since I still have my radiated prostate. So treating it as <0.01.

No side effects.

My medical oncologist Dr Jeffrey Turner an associate of Mark Scholz and Richard Lam set a bogey of PSA = 1 rather than using nadir +2 since my PSA has never been very reliable as an indicator.

At that point hopefully far into the future, we do another set of F18 sodium and C-11 Acetate or equivalent scans du jour.

Sonny just posted about a couple of clinical trials that he is looking into. If I qualify I would do scans now (rather than wait til my PSA exceeds 1.0) just to see if there are any remnants of the 3 micro LN's contained within the pelvic area that was radiated (the whole pelvic girdle not just the 3 micro mets along with the prostate and what we would call the prostate bed had it been removed).

www.healingwell.com/community/default.aspx?f=35&m=3314922

I have been on Zytiga since 8-26-14 when I had my second PSA increase to qualify for Provenge. Plan is to try IHT if I remain undetectible until Memorial Day 2015 when I would then have been on Zytiga for 9 months and Lupron for 26 months.

Even if I do have more mets, most likely Lupron and Zytiga are masking them from even the most advanced scans whose best results are usually at PSA >=2.0. My rationale was even though the best scans cannot see them, the SBRT would zap them just on general principle.

Hope all is still well with you Houseboy.

Hi Again Jim:

Further to my recent post, MRI was negative, as were the bone and CT scans taken in 2014, including the C-11 PET/CT scan with acetate taken in December. My onc and Dr. Myers agree that cancer is there and growing with a DT of 3 months, but present technology cannot pinpoint it to allow it to be zapped with SBRT. Too early for chemo and/or Xtandi.

Will await future scans to ident location of mets and hopefully with SBRT knock the PCa back to undetectable.

Still continuing with Zytiga and Metformin.

If anyone is aware of trials for which I might qualify, I would be happy to try.

Houseboy

Hey Lupron Jim:

I would be glad to give you my email address if I knew how to do that on this site.

Dr. Andrew Loblaw is leading the oligometastic and SBRT studies at Sunnybrook. My rad onc is Dr. Patrick Cheung who works on this study. My med onc is Dr. Urban Emmenegger, also at Sunnybrook in Toronto.

Let me know how to give you my email.

As you can see from my signature, I am in a bit of trouble trying to slow down my DT. Any suggestions?

Houseboy