Hi again. The last time I posted was Apr 29, 2009 seeking advice about hot flashes from HT. Oh, how things have changed. A little background, I was diagnosed Dec. '07, GS9 and PSA 8. I started 3 month injections of Lupron Jan. 08 and Casodex and Avodart Apr. 08. I had local therapy(cryo) in Aug. of '08 and got my last 3 month shot of Lupron in Aug. of 08. The last dose of Casodex was late Dec. of '08. I have continued Avodart and will probably take them ad infinitum. I did well after the cryo, reaching a nadir of <0.01 in Oct of 2008 and maintaining until Aug 2010 when it climbed to .02. Then it started rising at the rate of 4-9 months DT until Jan 24 of this year and is now 1.15 with a DT of 3.5 mos.
I have been using Dr Barken for coaching since by disease started. I talked to him recently about my condition and he recommended a naF bone scan and a C-11 Choline or C-11 sodium acetate PET scan. The C11 Choline is only FDA approved at Mayo in Minn. and requires a 45 minute appointment with Dr Kwon and then another visit, if approved for the test(FYI $17,000 and only partially reimbursed by a few private insurance companies). The The C 11 Acetate PET scan is done at Phoenix by a radiologist, Dr Fabio Almeida, and according to Dr Barken the results are comparable. Since my disease seems to be progressing at a alarming rate I decided to go to Phoenix. The other test he recommended was a repeat of the blood bio-markers. I have the results and if anyone is familiar with the normals and out of range I would be glad to post them.
I will close for now but would appreciate any dialogue.
Last edited by herefishy; 02-27-2013 at 08:12 AM.
My good friend had the C11Acetate PET by Dr Almeida. He had to come off ADT and let his PSA rise to 2.0 in the hope that something would show up. The finding was that he had one iliac lymph node that was questionable, and on follow-up endorectal coil 3T DCE MRI, it was very slightly enlarged. We decided to nuke it. He went back on IADT - Lupron plus Zytiga this time, and added 2 weeks of Leukine pretreatment as well. Dr Kupelian targeted that node and a couple of inches upstream and downstream from it with SBRT, which he had last week. He'll stay on the ADT for some yet to be determined time period. Hopefully, when he comes off it, his PSA will be undetectable or at least the PSADT will have slowed (it was 2 months).
I am not on the board much but noticed your post. I am a Gleason 9 with PSA 45 pre op in 2005. Roughly 3 years later after 1 year on Lupron, 1 year off and 1 year on the lowest I was able to achieve was .8-1.
I made the trip to Dr Myers in Virginia (recommended by someone on this board) and he has had me on Lupron, Casodex (generic) and Avodart intermittent triple blockade since. I have been successful in getting to <.01 twice during my on periods. However as soon as I went off it would start to rise. Last off period doubling at abot 3-3.5 every 3 months.
Last summer he sent me to Sand Lake Imaging in Orlando Fl for feraheme MRI along with other scans. The MRI with Feraheme contrast was successful in identifying lymph nodes outside the area of my previous salvage radiation done pre Myers. I was in Orlando for 3 or 4 days and the only thing not covered by insurance was the Feraheme injection which was $1500.00 or so. In my case well worth it. The F-18 bone scan showed nothing as did all the other scans.
I believe you must be referred by Dr Myers or Dr Dattoli from Sarasota. Dr Myers actually recommended Dattoli Cancer center for the radiation, Mike Dattoli did Dr Myers back in the late 90's when Dr Myers was diagnosed. I won't know the results for some time as they leave you on hormones for a period of time after but the Dr's are very optimistic.
Also Dr Myers uses a number of strategies to attack the cancer in those who have cancer that is resistive to first line hormone therapy. I find him to be have a great and positive way of dealing with patients. I only see him once a year when I commute to the mainland USA, the rest of the time I deal with him through his web site patient portal.
It is not unusual for Dr's to paint a negative picture for those of us with cancer that spread outside the prostate, with Psa's that don't drop below .05 after treatment even with hormones, especially if the start PSA was high and a higher Gleason. However, Dr's that are on the forefront like Myers, Bravo, and Dattoli plus a number of others take a much more positive view.
Time will tell if my latest venture will have long term results but nothing ventured nothing gained. I hope you find your solution. The more time we buy, the closer we are to the magic bullet.
I think that you may well wait until more assurances of detecting cancer are achieved.
Most respected doctors like Myers, Strum and Scholz, believe it difficult of detecting cancer while the PSA is lower than 2 to 2.5 ng/ml. The spot treatment you may be looking for would also not differ were the PSA higher.
The important aspect on your recurrence is to get the cancer’s “hiding” location to zap it for good. Parametric image studies seem also to be required to fire a precise shot.
I would recommend you to get specifics on the tests, discuss them with your doctor and decide later. Some bio markers will be important to check for any interferences with the contrast agents of the tests.
Best wishes for the perfect shot at the “bull’s eyes”.
Thank you all for the replies. My tests in Phoenix are scheduled for Tuesday/Wednesday of this week and all reservations have been made. If nothing shows on the tests, it will be just one of many that I will be taking in my future. I will be talking further with Dr Barkin and a prostate oncologist here in New Mexico who went to school with Dr Bob Leibowitz. He also consults with Drs Sholtz and Lam.
My latest PSA went to 1.35(double that on account of taking Avodart) so it is progressing at a steady pace. I will post more when I get back from Phoenix.
Last edited by herefishy; 03-11-2013 at 08:11 AM.
Reason: add psa info
The results from C11 acetate scan and NAF bone scan by Dr Almieda revealed PCa in both seminal vesicles but no indication of metastases
in other organs or bone. He advised me so see Dr Bahn and get a CDU and biopsy, so I have an appointment with him Apr 2nd.
Here is the wording from the report:
Mild focal increased metabolic activity is noted in the mid anterior aspect of the prostate gland,
SUV max 2.1 on axial slice 292. Additionally there is mild focal increased metabolism in the
proximal right seminal vesicle, SUV max 1.4 on slice 285 and mid left seminal vesicle, SUV max
1.7 also on slice 285. These would be concerning for areas of local recurrence.
Does anyone have suggestions for the questions I should ask Dr Bahn and/or possible treatments for my condition?
Well that's good news that it seems to be a local recurrence as far as they can tell. If you've failed cryo once, what is the thinking behind going back to Dr. Bahn for more cryo ablation? Have you thought about treating the recurrence with SBRT?
The CDU and biopsy reports came back with Gleason 8 in both seminal vesicles. Dr Bahn said he does this type of cryo but in my case the tumor is close to the trigon of the urinary bladder and rectal wall so in order to be safe he might only be able to debulk the cancer and leave a few cells.
He stated radiation is an alternative but has the same risk problems due to the location of the tumor. Dr Barken recommended talking to Dr Roach of USF, Dr Fuller in San Diego and Dr Grimm in Seattle. I have contacted all three and have received a response from Dr Fuller's office staff that he does not do his procedures on high Gleason patients.
Tall Allen: Did your friend communicate with Dr Kupelian before his appointment? Any idea or calling or emailing Dr King?
Does anyone have any further experiences or hear of any with radiation and high risk patients?
Thanks again for your time.
Last edited by herefishy; 04-04-2013 at 02:53 PM.
Reason: improve usage
I communicated with Dr. King just last week about treating high risk patients -- he said he's working on a new protocol. But I think he is only treating previously untreated patients. You can ask. Dr. Allan Katz in NY routinely treats high risk patients with SBRT.
My friend had an appointment with Kupelian before his C11 PET scan. We discussed both that and feraheme MRI (which I favored). Kupelian might agree to treat you -- all you can do is ask. Another possibility at UCLA is Dr. Demanes who does HDR brachy. I think they would all want to give you an IMRT spray on top of the SBRT or HDR boost, because seminal vesicle invasion so often is a pathway into surrounding tissues.
You may want to check mike dattoli at dattoli cancer center in Sarasota fl. You can google it for info. He treats high Gleason, high risk. When I was there I met a number of gleason 8 & 9's being treated by radiation
Thanks for the replies Tall Allen and Guamjohn. Dr Demanes's assistant has my records and is showing them to the doctors. I hope to get an answer this coming week. Dr Grimm wrote back and said that an implant would not be advisable. I will start communication with Dr Katz and Dr Dattoli.
I heard back from UCLA and the HDR doctors said to come over for a consultation with Dr Kamrava, who is on the team with Dr Demanes. I will also have a 3D MRI but must wait for 6 weeks after my biopsy which is May 15th. I think this waiting and not knowing is the hardest thing. Don't know yet if they can do HDR on me, think I hope so, from the sound of it the routine is much easier on your body than conventional radiation, even if they use IMRT also. I also wonder if they will recommend any ADT or a supplement like Leukine.
You are right that hypofractionated radiation (SBRT or HDR) is easier on surrounding tissues than IMRT. They have consistently found no benefit to ADT with hypofractionated radiation. I'm sure they will not mention Leukine -- that was something I pushed for, and there is no clinical evidence for it. Will you be seeing Dr. King or Kupelian while you're there?
I went to UCLA to consult with Dr Kamrava about HDR and UCSF about whatever Dr. Roach would recommend. At UCLA, after my 3tMRI, he suggested HDR with a Lupron(22.5) shot now and a total of 6 to 9 months. He also said to stop the Avodart since it is apparently not doing any good. I would get the Lupron shot and 3 weeks later 1 day of prep and HDR the following day. Followup EBRT would last 5 weeks.
Dr Roach at UCSF said that he would prefer Cyberknife over HDR. The reasoning being that CK is more precise to my location, no anesthesia, and all done as an outpatient. The treatment would consist of placement of the gold markers, a MRI/CT with and without the endorectal coil. The coil being for spectroscopy. Then in another week I would have 4 or 5 treatments of CK to the seminal vesicles and the base of the prostate which would equal the dose I would receive with HDR. At the end of the radiation I would get a an initial treatment of Degarelix(Firmagon) with a total of 4 months. If I tolerate ADT, I would receive 2 or 3 years of treatment(I didn't think they recommended that much ADT with SBRT). There would be no extended EBRT.
I am pondering what to do!
I would appreciate comments.
Last edited by herefishy; 05-24-2013 at 04:06 PM.
Reason: add last sentence