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

beyondworried- if you have enough pain to bone area, then radiation can eleviate that so may become an option, the ADT or HT drugs usually kick PCa way down unless one is more towards refractive or becoming hrpca/mrpca. Being a Gleason 10 you have more possible concerns about aggressive PCa cells, you might have better response with estrogenic drugs added or using leukine,Keto, Zytiga, MDV3100 and some others.

With your ultra low psa values and if you have disease progression then you have very aggressive PCa (the PCa cells, DNA ploidy could be the 3rd or worse type of DNA structure and does not respond to HT as well) or even have an undiagnosed variant type (which is not as easily defined as you might think). An onco doc should be monitoring other markers for the biology of the disease, this is mentioned as to what those tests are in DR. Strum's book 'A Primer on Prostate Cancer' and the CTC blood test can also be useful, especially when used in comparisons over time. I guess the lesion being 1.3 is around 1/2" in size, if that helps for comparisons.

Dx-2002 Mar-Apr., emergency room total urinary blockage from PCa, no bph issues, bPsa 46.6,  12/12 biopsies all high volume PCa 80-95% in everyone of them, PNI in a few, Gleasons found 7,8,9's (2 sets ), given Gleason 8 overall by Grignon pathologist, ct and bone scans appearing clear, 8 opinions and denied surgery by Dr. Menon (correct decision too), fired 1 onco and 1 radiation doc, started with ADT3 drugs prior to radiations using 2 machines Neutron rays (Cyclotron) 10 sessions & Photon rays (IMRT) 24 sessions thereafter, 2 yrs. overall use of ADT3, monthly psa tests done and started to fail on ADT3, switched to DES and did way better for the next 8 yrs. of useage (occ. intermittently), starting to fail on this and considering my others options, new scans just done and  getting advice and options on what I may do next.

Post Edited (zufus) : 11/11/2012 10:50:41 AM (GMT-7)

Hi Special Lady and Zufus:

Here is a quick update which may be of use to you with your questions.

After my treatment described above, my PSA dove to 0.1 over 5 months, and then immediately started doubling every 6 weeks. When it reached 2.37 some five months later, I had the C11 PET CT Scan with Acetate under Dr. Almeida in Phoenix (see his post above). Lo and Behold! A bone met clearly showed up in my left ischism - like a light bulb. No other activity was observed, even in the areas where I had my previous radiation, which to me seems to validate my previous SBRT treatment one year earlier.

Upon reviewing my many CT, Bone and MRI scans taken since diagnosis one year earlier, the left ischism bone met can be identified - just not recognized as such by the radiologists at the time .

Dr. Cheung again applied SBRT targeted to my left ischism with a curative dose over 10 days. My local Urologist in Canada considered this treatment to be "absolute craziness", but he had no explanation for the fact that over those 10 days, my PSA went from 2.39 to 1.98.

I am not a Radiation Oncologist, but what does this result tell you? My PSA continued to decrease to 0.45 over the next month, but that may or may not be the result of Zytiga that I began taking immediately after my last radiation. I am now waiting for my next PSA reading to see if this downward trend continues.

I will keep you advised. Sorry, your email above was blanked by our careful moderator so I could not reply to your request.

You should know as well that Dr. Kwon at the Mayo Clinic in Rothchester uses the C11 PET CT Scan with Choline, and then applies SBRT targeted to the mets that show up, with impressive results.

Good Luck to your Father,
Houseboy

Houseboy, thank you for your update, I wondered at times how you were doing. Reply to your thread was (I believe) my first on healingwell forum, and what an inspiring topic this indeed is. As you may remember, my father and I had a consultation with a radiation oncologist in Germany who is familiar with the concept of oligometastasis and has treated several patients based on this concept. He told us at the time, that a clinical trial is scheduled in Europe, but that it will take a while, and since PC is a slow disease anyway, the final results may be a decade or two away. After a long and careful consideration, we decided against radiation, but our decision was mostly based on practical issues and also my dad´s wishes.

In retrospect, I think this was a good decision because, I realize now, scintigraphy and MRI, were not sufficient for detecting all soft tissue or bone mets. I believe if you are going to attack these mets, you better know exactly where they all are, only then does it make sense to go after them. You have done just that with C11 PET, and that´s why you are on a good path to cure. You, just like Jerry L, seem to be in great hands, with aggressive doctors and aggressive treatments, this is what I would choose if I were in your situation. Your PSA is GREAT, and I am happy for you. It´s good to hear you have your PC under control after all this time. Hopefully this thread can serve as good source of information for future patients in a similar situation. All the best to you, keep in touch.

Hello Houseboy and others.
I'm also very interested to hear your progress. I'm 50 years old and diagnosed last week with PSA 21, Gleason 9, 12 positive biopsy cores, 90% grade 4/5, and 3 bone metasteses. Just started hormone therapy. Radiation oncologist mentioned oligometastases, which is how I found this blog.
Oncologist wants to do three months HT before considering radiation. So this thread is very good for me , as it gives me something to talk about with oncologist.
I'll also post any progress. The oncologist was very optimistic about survival, so hopefully I can post updates for a fair while :)

Hi There SteveOz:

So sorry to hear of your diagnosis, but as your oncologist told you, there is hope. Indeed, your PSA and Gleason 9 at diagnosis with 3 bone mets are similar to my stats.

I gather that you are referring to your radiation oncologist – do you have a medical oncologist to give you a wider perspective? I have one main med onc in Canada and two med oncs in the US that I use for consults. My Canadian rad onc is really used just for targeting and radiating the spots identified by cutting edge imaging that I have to obtain elsewhere (see above), but he ‘spot’ radiates only as part of a special Study he is doing. Otherwise, I would never have found a rad onc in Canada who would ‘spot radiate’ metastases with curative doses, even at the so called ‘leading’ cancer hospital in Canada. However, my US med oncs indicate that this therapy although considered experimental is common in the United States.

My last report gave my PSA at 2.39 immediately before the SBRT, 1.98 immediately after the 10 day treatment, and 0.45 one month after the SBRT. I am happy to report that two months after my PSA was 0.07 (not because I drink Martinis), and three months after it is < 0.05. My main med onc and I both think that this remission is a direct result of the spot radiation and not the Zytiga that I started 6 days after the SBRT, although the Zytiga might be the reason for my Testosterone level going to < 0.2 L (my lowest level since diagnosis).

What lies in the future I do not know, but I think that my rapid conversion from a Gleason 9 PSADT of 6 weeks to an undetectable PSA has to argue well for targeted radiation of bone mets. On the other hand, as you know, radiation has its side effects as well as risks, and there is no evidence yet that this targeting of bone mets actually improves survival.

Having said all the above, I cannot emphasize enough the importance of cutting edge imaging – in my case the C11 PET CT with acetate in Phoenix, and reportedly also with choline at the Mayo Clinic in Rochester, and the MRI/PET at Sand Lake in Orlando.

Good luck with your choices and treatment, and keep us all advised on your progress.
Happy New Year,
Houseboy

Hi Paul:

I quote from above: "There are only a few places in the US where these scans can be done because both the Choline and the Acetate have a half life of only hours so they have to be produced on site and immediately infused in the patient. There are only a few sites in the US that have the required cyclotron to manufacture the Choline or Acetate."

The cost with Phoenix for me was $3000 without insurance. I do not know what Mayo charges are. With Sand Lake, you have to be referred by Dr. Myers in Virginia, and I am not sure of the cost these days but it is probably between $5000 to $10,000.

Sorry, but I cannot answer your other question about who else treats oligometastases.

Houseboy

Houseboy and Paul:  I had the Sand Lake scans done to include the Feraheme MRI and F-18 Pet Bone.  The MRI was covered by insurance but the Feraheme injection wasn't,  it cost $1,600, the F-18 was covered by insurance also.

Good luck

David

Houseboy,

Sounds like primarily the pelvic area. Same here. Iliac wing and Pubic Ramas. Had them radiated.

When will you be getting follow up scan?

JL

Houseboy,

I was looking back over this thread since it popped back up. You had commented that you could not contact SpecialLady because I blanked out her email in the post. I did that because there is a rule against including such information in an open post. As I noted at the time, she has included her email in her user profile, which you can see by clicking on her id in any post. 

I just realized I had not followed up on that, so just to close the loop -

what a great thread- we may actually be making progress- encouraging

I wish each of you a great new year with positive results in your treatments.
Thank you moderators for keeping all of us "In Line" and informed!

Doc-FA,

I'm interested in your involvement in PC. This month I will celebrate my 1 year anniversary of this disease. I'm sure, as many here, I have many questions but I don't even know what to ask. My uro acts like he's got everything under control, as does my primary doc does (if that were the case with my primary I wouldn't be in the condition I'm in). I asked my uro's office about info on an oncologist and they told me that I don't need one yet. my 1st psa test 3 mos. after my RRP was .008, 2nd psa test was .02, last psa test in November was .04 so I see a pattern but my uro tells me not to be concerned. My clinical stats were T2c and psa 9.6, after RRP I was upgraded to T3b, gleason 3+3. I had my surgery performed at Lacks Cancer Center in Grand Rapids, MI. on 1/25/12.

Happy New Year Jerry L:

Yes, DEXA is the conventional Bone Density measurement. I understand the new one is called the QCT, but of course, we in Canada do not have it to my knowledge.

Dosage of Estradiol is 0.025 mg per day provided by one patch a week (2.0 mg of estradiol spread over 7 days) - I know it does not compute but that is what the label says. How much estradiol do you get in 24 hours?

If you are on the estradiol patch, why the Xgeva? Did Dr. Myers also prescribe that in conjunction with the estradiol patch? How often did you have the Xgeva injections?

As you know, estradiol patches are highly controversial. Even Drs. Strum and Scholz do not advocate it. Only Myers. I know of no other doctor prescribing it.

Houseboy

House and Jerry:  Dattoli also prescribes estradol patches, I'm on .025 twice a week, it makes sense that Dattoli would also because a lot of patientss come from Myers.

David