Please welcome new G9 member Whattheheck - many questions, possible mets (calling Tall Allen!)

Our new G9 member posted on the G9 Crew thread. Reposting here so he can get some direct support from our knowledgeable forum members:

Whattheheck said...
Hello Everyone,

Sorry in advance about the length of this post. I'm a new poster on this forum and I just found this thread for us Gleason 9s. As I am sure you all know... Boy do I have questions! As a natural born researcher, my head has been fused to my laptop for several months. Here are my biggest questions/concerns for now:

There seems to be some question regarding the accuracy of my bone mets diagnosis. The initial CT and 3T MRI scans (both with and without contrast) did not show anything bone wise. The subsequent bone scan showed one possible met in one rib and one in my left hip. Due to significant arthritis in my knees, feet and hands (shown on recent, prior Xrays) it is logical to think it could also be arthritis in my hip rather than a bone met. The rib is also possibly some other glitch/old wound etc. (I played hard when younger).

Due to my urologist's possible questions with the bone scan credibility, he ordered Xrays which showed nothing on the rib and an arthritic hip so he ordered a Sodium Fluoride PET/CT scan.

This new scan is showing several more possible lesions including the back of my skull, two on the T1 & T8 vertebraes, two ribs and one in the pelvic or sacral area. I have read that the S.F. PET/CT scans are very sensitive and can lead to false positives in many cases, especially if the radiologist isn't very experienced with reading them. I am wondering if a bone biopsy might be a good course of action for me to confirm the mets.

The Urologist and Onc docs have jointly recommended Chemo (dosetaxel) but then the Onc doc said, due to the recently published results of one of the Stampede Studies, Zytiga with Lupron is also an equally good choice for me at this stage. Both the Urologist and Onc doc said that local therapy is not a consideration because of the bone mets, although the Urologist did mention something about minimizing the tumor burden and I think he was talking about local treatment.

At this point I am wanting second opinions on both the bone scans, if not a bone biopsy as well as treatment options. I also want to see a Rad Onc doc as well. I have read that in some studies, the triple threat which includes local therapy as well as treating any bone mets along with hormone therapy is a better choice in my case which is -initial PC diagnosis with bone mets.

I have also read some of your suggestions about finding the best doctors and to go there. Unfortunately, I am in Reno NV and on a PPO insurance plan. I can go out of network but then there is no maximum out of pocket and I will pay 40% of the non-negotiated rates, plus travel and lodging. I am afraid that I'd be in the poor house before I even got started.

Any help on any or all of this will be much appreciated!

THX

______________________________________________________________
Age 63, 4/17 PSA 16.4
5/17 3T MRI 2.5 cm tumor w/poss CE, 1 "irregular" node 1.9
6/17 Biop 22 cores G7, 8 & 9.
6/17 Bone scan- poss mets, 1 rib, 1 hip
6/17 SF PET/CT scan w/poss bone mets- 2 vertebrae, 2 ribs, 1 sacral
7/17 Lupron, 1wk of Casodex, PSA 17.0

Whattheheck-

Yes, bone scans are confusing. So are NaF scans. They tell you what areas have bone overgrowth or active bone growth, but may not be specific for prostate cancer. There are other PET scans that are more specific, but are expensive or not available everywhere. Bone biopsies are invasive and they aren't always in convenient places. The easiest way to sort out what is a bone met from what isn't is to simply wait a couple of months and re-do the scans. If the lesions are related to prostate cancer, they will shrink. Otherwise, they won't. Waiting a couple of months while you're on Lupron is safe - the cancer won't grow.

As for next steps, there's no one right approach. Here is a discussion of the several options. Note that Zytiga is no less toxic than docetaxel if used at this point:

Newly diagnosed, metastatic (M1), but still hormone sensitive - best options

Will your insurance cover a consultation with a medical oncologist in Las Vegas? If so, talk to Nicholas Vogelzang - one of the best anywhere.

If former moderator and HW member Tony Crispino pops in, I'm sure he can give you a glowing recommendation for Dr. Vogelzang, his doctor and mentor.

It takes a few months for Lupron to be maximally effective, and for guys like you, who are hormone-naive, there is no risk, and possibly some benefit to waiting. A shrinking lesion with Lupron is a sure indicator that it is a metastasis. It won't go anywhere but smaller while you take Lupron.

I can't speak for Dr Sartor. I think what he's saying is that ideally the results should be replicated, but owing to the vagaries of clinical trial funding, it probably won't be. Unless you have a heart condition, Celebrex is a safe drug. Zometa is prescribed anyway for men on longterm ADT who have metastases. So it's hard to see why anyone with mets on ADT wouldn't take them.

I don't think you have any clear next steps until your situation with respect to metastases is clarified. In a couple of months, you'll know a lot better. You are losing nothing by waiting, as nerve-wracking as it may be.

Whattheheck said...
According to the recent trials, if I don't actually have any bone mets, isn't the docetaxel route along with Lupron still a good choice with advanced G9 PC? Possibly with local radiation too?

They found that, among men with any mets, the benefit of early docetaxel use was limited to those who had 4 or more distant metastases, with at least one beyond the vertabrae and pelvis, or visceral mets.

Another RCT showed a very small advantage to adding docetaxel to IMRT in men with no detectable mets.

I would think so -- what did your PSA and bone alkaline phosphatase do in the interim? Their reduction is an indicator that mets are shrinking. If you can get insurance to cover the NaF Pet/ct scan, you don't really need the bone scan.

Your plan sounds good to me. If the bloodwork is good (low T, low PSA, low bone ALP) and your PET scan looks improved, you'll know they were mets.

I feel bad that it has taken me this long for me to post an update. Partly, I am not clear on navigating and posting here so don't do it. Until I learn better, I am sticking with this thread. Please someone let me know, S hould I continue here with this thread or post elsewhere?

Anyway, thanks to Tall Allen's suggestion I went to Las Vegas to see Dr. Vogelzang. I am so glad I did and thank you so much for the recommendation. Unlike the local Reno doctor's, Dr. V. Told me everything I couldn't get from my Reno Doctor's. He was up on all that I was finding in my research, plus much more. Here is Dr. V's treatment plan for me:

Started Zytiga in November and at the same time requested authorization from insurance to also start Jevtana. Insurance denied this as experimental so I got creative by adding a second insurance policy which approved the Jevtana and left the Zytiga and Lupron with the older insurance. I haven't found anything saying I can't do this and I haven't lied to anyone so hopefully it won't implode on me. Once the Jevtana is done I can drop the original policy and stay with the new one for treatment going forward.

Started Jevtana on January 4, 2018. As of today, I have had three of a proposed ten infusions. I have also continued Lupron since they started the end of June, 2017 and I'm still taking the Zytiga.

Rather than continue flying to Las Vegas every three weeks, Dr. V has referred me to the UC Davis Cancer Center with Dr. Primo Lara who worked under Dr. V when they were at the university medical center in Chicago. Dr. Lara is only a two hour drive away from me in Reno. Hopefully he will agree to continue with Dr. V's recommended treatment. If not, I expect I'll be back to flying to Las Vegas every three weeks. It's about a nine hour drive which is not realistic.

Dr. V's plan is to follow the Jevtana treatment with six monthly courses of Radium 223 and then prostate removal surgery after that. Dr. V also had genetic testing done which was inconclusive for known mutations.

I have yet to run across anyone else who has gone this same treatment route but I'd love to hear from others. I believe that having metastatic, with no prior treatment, PC is somewhat rare and this might lend my condition to the aggressive treatment plan. So far my blood has recovered well between infusions so the prospect of ten infusions seems realistic, though I'm struggling with sickness side effects from about days 4-10 after the infusions. At least I feel good by the time I need another infusion, yuck.

As for the second S.F. PET/CT scan to verify bone mets which I asked about befor, Dr. V convinced me that I had mets and didn't (or possibly wouldn't) order one. It also turns out that I had a few more mets than I thought. The most telling was the back of my skull. It's not likely that I have arthritis there along with about six or seven other spots.

So, while Dr. V hasn't used the word "cure," he is hoping my PSA will go to .01 and I will come off the ADT after two years from start. I am what appears to be a significant experiment but I have faith in Dr. V. His perspective is that the type of treatment thinking he is prescribing is along the lines of where other cancers have progressed to but prostate cancer science is behind the others. I like his logic but I know he isn't God, though he comes pretty close in my book. Time will tell.

I'd love to hear perspectives from others and especially Tall Allen. Thanks to all

May you all be well. May you all share in the blessings springing from the good I have done.

There is nothing, substantive that I can add, only that I wish you well.

Roger

You are on a wild journey. Thanks for the update. I wish you well with the rest of your treatments. Take care. -JR

Whattheheck said...
Your comment that surgery would not be nerve or bladder neck sparing is a concern. Is this a given for me if I opt for surgery? Also, is ePLND a given with surgery as well?

Nothing about it is a given - it's all entirely up to you. And I wish I could provide some better info to help you decide. As you saw, the oncological results were the same for RT and RP in that study. Some database analyses show better survival for RP, but when you account for age and comorbidities (that increase with age) those differences seem to vanish. In the MD Anderson clinical trial, patients can choose which they want.

The extent of debulking is up to you, but I think most doctors would want to eliminate as much of the detectable and probable cancer as possible. For RT, that would mean whole pelvic with a boost to the prostate and maybe even zap any distant mets with SBRT (as they did in the study I reviewed). For RP, that would mean ePLND and cutting wide because the original prostate tumors have been growing and probably extending outwards.

Now, you also have options with varying SEs about which kind of radiation to use. I think John16 just had IMRT, but it is also possible to include a brachy boost, understanding that the prostate tumor may have grown radioresistant. It should be possible to do the whole thing (whole pelvic + a prostate boost) with SBRT, but I don't know if you can get that done in a convenient location for you. Possibly at UCSF (Joe Hsu would be a good choice for a brachy boost).