Had a very beenficial initial consult June 9 with Dr Jeffrey Turner from Scholz/Lam practice

I had my first consult on Monday June 9 with Dr Jeffrey Turner an associate of Mark Scholz and Richard Lam at Prostate Oncology in Marina del Rey California.

Among their clients are Healing Well's Mr. & Mrs WorryWart see Dr Turner, Mr & Mrs. Wampuscat see Dr Lam and Ray the Steel Guy sees Dr Scholz. Sure there are many others on Healing Well and US Too Inspire.com that are also clients of theirs.

On this initial consult I only saw Dr Turner but the three of them collaborate in their diagnoses and treatment planning. I will likely meet Mark Scholz and Richard Lam at my next consult.

The flexibility in their practice is because they are a private entity not bound by university protocols that dictate standards of care at UF & Shands, MD Anderson etc. who are all very good, just restricted.

For example I was not deemed eligible for Zytiga since I am responding so well to Lupron. To qualify for Zytiga, one typically needs to have rise n PSA, become testosterone resistant to Lupron etc. Ditto for clinical trials that I seem never to be eligible for either for these reasons or because I have been on Lupron too long for the trial (since 3-28-13).

Dr. Turner order the Zytiga for me yesterday.

Game plan is for me to go to AZ Molecular Imaging in Phoenix (I am a big fan of Dr Fabio Almeida who gave me a lot of free telephone consulting even after it became clear I was not a candidate for his clinical trial).

We will do the more high powered scans C-11 and F-18 to identify any micro mets and lymph node involvement not visible on standard total body bone scintigram and CT Scans of Thoracic Spine, Abdomen and Pelvis with Intravenous contrast that are limited to macro level mets > 2 mm.

A recent whole body scan showed my former Oligometastasis is no longer evident on whole body scans. Opinion is that some trace of the former mets are still there but only visible with C-11 and F-18 higher powered scans offered by Dr. Fabio Almeida in AZ, Sand Lake in Orlando, UCLA where OSnny got his scans, and a few other places.

So the initial game plan Dr. Turner and I agreed to is:

1. Do both a C-11 and an F-18 with Dr Fabio Almeida in Phoenix ASAP

2. Order the Zytiga on June 9

3. Meet again when we have the results from Dr Fabio

4. Radiate whatever mets and lymphs the C-11 and F-18 identify.

On the latter I could either see Mac Roach up here at UCSF with some logistics help from a friend, or a Chicago radiation oncologist when I am there in late June thru mid July or my radiation oncologist in Florida who I am very comforatable with.

I would like to go to AZ Molecular Imaging ASAP so that we will have time to do our second consult in Marina del Rey before I leave for trek to Midwest on June 24th.

Depending on logistics, I could either fly down to Phoenix from San Jose CA if it's this week or next. I have lots of airline miles from when I traveled every week for IBM from 1998 to 2005.

Either same day with scans later in day or fly in night before, whatever time slot Dr Almeida can squeeze me into.

My reason for seeking a consult with Dr Scholz/Lam/Tuner (or Dr. Charles “Snuffy” Myers) is a general felling that though I am responding extremely well to the traditional one remedy at a time in my case Lupron first that my medical oncologist at Univ of Florida & Shands employs, perhaps I should be doing much more to kick the aggressive G9 PCa where it hurts while it is down rather than playing Russian Roulette waiting for each remedy to fail before initiating the next one serially, i. e., a cocktail approach Tall Allen and others often speak of.

I was expecting a good consult but my first session with Dr Jeffrey Turner was way beyond my expectation, well worth my time and any cost Medicare might not cover.

I will keep you all informed on next steps and progress on this initial game plan.

LupronJim

Great report Jim, sounds like you are staying ahead of the curve and hopefully keep the cancer knocked back. Go for the cure!

Jack

That is a great report Jim and sounds like you are in good hands.
Michael

Thanks for the update. Like Tall Allen mentioned, I didn't think the C-11 would pick up anything unless PSA is higher. By the way, hope your wife is still doing well. I am sure that took your mind off of PC for a while.

Tall Allen said...
LupronJim,

I've met Scholz & Lam - haven't met Turner yet, and greatly respect their approach.

You seem eager to get the C11 Acetate scan, but my understanding is that it isn't likely to show anything much until your PSA rises to over 2. Is it your plan to go off ADT for awhile to allow that?

There are a few PET indicators in clinical trials now that may allow for imaging even when PSA is very low.

The problem with getting Zytiga or Xtandi when one is still Lupron-sensitive isn't the doctor ordering it - a lot of doctor's will Rx it off label. The problem is getting insurance to cover the high cost. I know Scholz got it for my friend, and it is a mystery to both of us how he got the insurance company to cover it. I never asked because I didn't want to look that gift horse in the mouth.

- Allen

Hi Tall Allen.

Yes I ws not as clear on that as I intended.

Dr Turner thinks at most there will be micro mets at T4 & T9 (T7-T8 that used to show up was actually a benign hernated disc with sspinal compression that I never knew I had since I have no pain). I also formerly had mets in right sacroiliac. Though they no longer show on standard bone scan, there may still be some residual < 2 mm just itching to be xapped.

He ais also virtually sure there will not be much in way of nrew micro mets as you allude since PSA was 0.10 (have not seen results of yesterdy's PSA toi see if I finally achieved that elusive less than sign, nor Testosterone result yet since I left Marina Del Rey to drive to San Jose to spoil grand kids.

The thinking was that if perchance there is a micro lymph node or unexpected micro met, as we do the spot readiation to T4, T9 and right sacroiliac, can zap anything nearby and play whack a mole if ncessary, but nuke as much as we can while we are int he neighborhood without shooting blindly and affecting good cells.

LupronJim

compiler said...
Jim:
I know Lam mentioned that when my PSA rises above 2.0, that would be a good time to do the C-11 scan. He mentioned Mayo

Mel

Thanks Mel.

I guess I just missed you when you were in Florida, as we were prepping for 3 month Horace Greeley go west young man starting May 30th shortly after you were here.

I had been over to see Steve a/k/a 81GyGuy on May 13 th I think it was since I go to Gainesville every month for my Xgeva shot. Had also stayed in contact with Big Mac who lives in Boynton Beach area quite a hike from us, and with Sonny who I believe you were able to see when down from Michigan visiting Florida.

BigMac and I and his spouse Lorna and my spouse Karen are going to do the Clearater Prostate Cancer aswareness walk together on Sept 6 in Clearwater. He did it last year and says it was a fun event.

I live in remote area of Citrus county about 90 minuted due North of Tampa and NW of Orlando, and South of Gainesville.

Hope to meet you in perosn at GFMPH Rochester last week of Sept to exchange fellowship around the nightly campfires.

In my distant past I was a math major and an Actuary but post Lupron I am not the compiler I used to be so will leave that to you and your HW handle.

LupronJim

Lupron Jim,

Sounds like you had a great visit. Good for you for being proactive and taking charge. You know me...I'm like Columbo..just a few questions:

- Even though you and I didn't have "high volume" mets, did you ask the doc about the recent trial about chemo+ADT? Just curious what he would say.

- So, you're getting the Sodium F18 Pet/CT Bone Scan? I only ask because there is another F18 Pet scan that uses a different agent...(Just so you know, this should be generally available throughout the US. I get this every 6 months and I know of 3 locations within 20 miles)

- Is the C11 covered by your insurance? I'd be interested in that scan as well, but doc never tried to get it for me...probably like others have stated, waiting for my PSA to rise.

- Radiation: Just so I get this clear...you haven't had any radiation at all, correct? not even to the prostate bed? Is there any benefit to do the pelvic bed like regular adj. radiation and spot radiate anything that shows up?

And like Columbo would say...and just one more thing....if you go on the Zytiga, do we then change your name to ZytigaJim? We should take a vote...

Thanks,
Jerry


-

Bill:

 

We shall see. I'll revisit this in early October.

 

Mel

Jerry L. said...
Lupron Jim will insert his comments into JerryL's text to make it easier to answer and for othes to follow. I now know the F-18 will be June 18 at 1:45 PM and the C-11 will be June 19 at 10:00 AM with Dr Fanbio also spending time with me reviewing the battery of bone scans, CT scans, MRI's and bone density tests I have had in past 15 months

Sounds like you had a great visit. Good for you for being proactive and taking charge. You know me...I'm like Columbo..just a few questions:

- Even though you and I didn't have "high volume" mets, did you ask the doc about the recent trial about chemo+ADT? Just curious what he would say. Jerry, Dr Turner and I did have the conversation. If I recall this is the one with about a 17 month benefit as opposed to most of these treatments offering about 4 months each. We spoke in terms of in the future, not before we spot radiate anything and everything we find on the F-18 and C-11.

- So, you're getting the Sodium F18 Pet/CT Bone Scan? I only ask because there is another F18 Pet scan that uses a different agent...(Just so you know, this should be generally available throughout the US. I get this every 6 months and I know of 3 locations within 20 miles) The F-18 Sodium Floride is widely available, reason for going to Dr. Fabio Almeida and AZ Molecular Imaging is their strict protocol and their skill at interpretting the result. The C-11 is only available here in AZ, at K-State and at UCLA where SOnny did his testing, and maybe one or two other places

- Is the C11 covered by your insurance? I'd be interested in that scan as well, but doc never tried to get it for me...probably like others have stated, waiting for my PSA to rise.Will try to get Medicare to pay but quite frankly with my PSA now at 0.23 and the C-11 generally not showing anything useful until PSA>=2.0, it is a luxury test that insurance should not pay. So I will be self funding the $2,500 for C-11 but expect my AARP UHC Plan F to pay the $1,000 for the F-18

- Radiation: Just so I get this clear...you haven't had any radiation at all, correct? not even to the prostate bed? Is there any benefit to do the pelvic bed like regular adj. radiation and spot radiate anything that shows up? Dr Turner discused that after we see the results of the F-18 and minimal if any results from the C-11 with respect to micro lymph node involvement , we need to decide not only what remnants of my Oligo mets now < 2 mm and only visible on F-18 not standard bone scan, to zap but also need to decide what if anything to do with the shrunken but cancerous prostate. It won't be surgery but may be some form of radiaiton or previous alluded to chemo. Dr Fabio Almeida is also starting a triall with Aplpharadin Radium 223 that requires castrate resistant but I am going to see if I can get in. It's a double blind, one with Zytiga only and other with Radium 223 but I was going to start Zytiga anyway so nothing lost if I get into the arm without Radium 223

And like Columbo would say...and just one more thing....if you go on the Zytiga, do we then change your name to ZytigaJim? We should take a vote... hah, I think I will be still be on Lupron along with Zytiga, but whatever I get called I have been called worse. Of course thanks to the Lupron I am more sensitive and may cry a bit mroe when name callling starts:}

Thanks,
Jerry

Thanks Jim.

Just a fyi---I always get denied initially from my insurance for my 6 month F18, but after a consult with my doc...it has always been approved.  It pays to be persistant.

be aware of the disclosures on radiation, especially on the spine, high dosage and one day would have more risk for collateral issues is my s.w.a.g. (guess), amazingly you didn't have pains, but my first issue seen by scans was T-9 and I had no pain at the time, too. My femur pain came on quickly and all at once, turns out I escaped possible fracture but had to radiate like 8-12" of femur, it did stop the pain related and added Prolia for additional bone health....best to what you end up doing....

Luptiga rolls off the tongue much more easily than Zytipron!

Thanks for posting all the new recommendations you've gotten...very interesting.

Lisa

David, rather than reply publicly to your bon voyage message, I will send you an emial after I have some clarity on next steps since by then you may no longer be posting on HW.

My guess is it will be a while before anyone else logs 23,788 posts. I am full boat since a year ago and only accumulated 865:}

Should free up a lot of time for you to enjoy life with your spouse and continue to pursue treatments best for your situation

LupronJim