I recently took my 2nd fluciclovine PET scan even though I had almost no evidence of cancerous growth. My PSA went up a little after being under control for most of the year following but all other labs continue to be the best they have been in 20 years for me. Glucose, Alkaline/Phos ratio, cholesterol, liver functions have gotten steadily better. The first test in May of 2018 showed 3 bony Mets and no tissue or organ involvement. Seemed to be under control after zapping the three Mets and having my PSA go all the way back to .6. Unfortunately, the May 2019 PET test is showing evidence of additional Mets in several spots. Still, no tissue or organ involvement and I am completely asymptomatic. I ran 8 miles today and knee and back pain I used to get before becoming a vegan and escalating my exercise program from 3 days a week to 7 days a week has disappeared.
While I hoped to avoid systemic treatment for a while longer, that no longer seems like a prudent path. Maybe it never was, but I wanted to try it. I test my PSA monthly and do more comprehensive labs quarterly. There has been no evidence this report would be bad, so hopefully, I did not cost myself too much. It really makes me angry to feel so good physically and have such shit going on inside.
I have a question for the group about opinions regarding the top specialists in metastatic disease. I am being treated at Penn Med. I love the oncologic radiologist there and the urology department. I am not comfortable with the medical oncology department. I have a couple of consultations this week at top institutions (Sloan Kettering and Mt Sinai) and expect to be on a new protocol by the end of the week. I think I have no time to screw around. Nevertheless, I would like to find out who is at the crest of the wave CONCENTRATING on metastatic disease, if that is a thing.
FYI, I read about the fluciclovine PET scan last year and I asked for it after getting an MRI that was negative while my PSA was rising post surgery. My guys thought it was a good idea and fought for me with the insurance company then. The second one seemed easier. My Doctor actually called me to schedule about a week before it was on my calendar to request. She is a spectacular Dr and human being.
The PET scan changed the radiation therapy plan in 2018. I did not need to be treated then, or now, in the prostate bed or lymph nodes. That is where they were headed after the MRI and before the PET scan.
Personally, I believe that everyone, like me, with a high-grade Gleason (9) at diagnosis with 2.7 PSA should have one. In my amateur opinion, I think it might have been productive prior to deciding on the RP. I have advised several people to seek it and I know of one individual who's medical team changed their mind on the initial treatment.
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Philly13
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Do you have the option of irradiating the new mets (May 2019)?
I've learned that the leading research urinary oncologists usually want to see disease "progression" following primary treatment and while on ADT. By this they usually mean PSA approaching or exceeding 2.0. This is a generalization and is certainly not true for everyone. It sounds like you are getting excellent care (I am biased being Philly borne and bred...).
I saw Dr. Daniel Danila who was recommended by dr. Howard Scher, who does not see new patients. I also saw Dr. William Oh at Mt Sinai. I really liked both Doctors a lot. I chose Dr. Danila because of the reputation of Sloan Kettering.
I took further labs and learned that my PSA climbed rapidly to 47 and T grew to over 900. I started with Firmagon right away and both Doctors recommended further treatment with Abiraterone or maybe Lupron in a couple of months. Next step TBD at my next appointment.
I continue to feel good physically, though I have been depressed since the Auximen PET scan results. All other labs remain quite good. An additional CT scan did not show additional cancerous growth that did not show up in the Auximen PET scan.
Not relevant any longer, but interesting. I saw 2 medical oncologists at Penn Med and did not connect well with either one. I asked to see the 3rd Doctor in the practice and they said no. I got fired as a patient from their practice. I suppose they might consider that I fired them. Nevertheless, it is disappointing they wouldn't let me choose which Dr. was well suited for my communication preference. There was no warm and fuzzy message from Dr. Oh or Dr. Daniela. However, both looked me in the eye throughout the discussion and communicated the reasons for optimism while not dismissing the gravity of the situation. They both listened and responded and never dismissed a question or observation with their words or body language. I have an excellent relatiohship with the Doctors in the urology department and the radiation oncology departments. I don't think I am a difficult patient, but even if I am, I think their posture on allowing another consultation is unacceptable.
I will be looking for a coordinating MO team in Philly to work with the doctors at Sloan Kettering, so I don't have to go to NYC to get get most treatments.
Well it's too bad about how you were treated by those A-hole doctors at Penn Med. Now I know if it were me (NOT YOU) I would post their names here as doctors to be avoided. Nothing bad but just "to be avoided". Well I am glad that you're getting good medical care at MSKcc and from Dr. Danila. As a patient at MSK I can assure that you're at a top notch cancer hospital. I know it's very important to have a good and open relationship with your M.O. since they are responsible to get you through this shitty disease. I don't look for warm and fuzzy messages from my doctors but only kisses on my lips. 👀 Well Hopefully things will work out for you regarding the NYC team and the Philly team working together (but not in sports however). Stay positive... and Well...
Hello Philly13, Thanks for your detailed posts about your approach to treatment. Since you are in the Philadelphia region, have you thought about checking Jefferson University Hospital? Their Sidney Kimmel Cancer Center (SKCC) is rated highly and my MO Dr Wm. Kevin Kelly and cancer team are excellent (Before he was hired at Jefferson, Dr Kelly was at Yale and Manhattan Sloan Kettering: blog.kimmelcancercenter.org... ). Also, SKCC collaborates with the SKCC-funded centers at John Hopkins and Manhattan Sloan Kettering (kimmel.org/interests/sidney... ). Similar to you, my diagnosis was Gleason 9, stage iv, some mets, but PSA 20+. Opted for surgery (May 2017), afterwards PSA continued to climb, "spiking" was one dr's comment. When it passed 35, my cancer team decided on ADT for me. PET scan requested by Dr Kelly denied three times by insurance company (first time he was unable to get the PET scan approved for one of his patients). Placed on ADT in Late August/early Sept 2017. Within nine months of ADT, PSA fell to 0.4. (PSA started to climb in autumn of 2018. Small area on my thoracic 9 vertebrae. That was zapped with SBRT and PSA fell back to 0.5 and continues to remain there.) In addition to the cancer team, SKCC has an excellent Wellness Center for cancer patients and caregivers giving massages, lectures, support, information, etc. SKCC recently started their Palliative Care Dept. headed by Dr Brooke Worster and her medical staff, all impressive. I am now 60, almost 61 years old, eat healthy, but am not a vegan, and exercise regularly. Bested my original bleak prognosis by 18 months and counting. Continue to be aggressively positive but recognize the gravity on my circumstances. Best wishes for success. If you have any questions about SKCC please ask or message me.
There is no pain and there may be too many spots to treat with RT. fluciclovine PEt does not really measure some aspects of the METs. Further testing to be done.
Discuss with your consultants the possibility of treatment with Lu 177 PSMA. If you could afford the cost, perhaps it could be possible to get the treatment in Europe or in Australia.
I screwed up not getting one in advance. There was non offered and I had no idea it would show what was going on. You are 100 percent right
Danila said the PSMA may be better and we may do that soon. He also said that fluciclovine is good but other tests are good to complete the picture. With Gleason 9 I will push for analytics regularly.
An update. I have seen a lot of Doctors and absorbed a lot of information over the last couple of weeks. After consulting with Dr Danila at MSK, Dr. Oh at Mt. Sinai, I chose Dr. Danila because of MSK. Both are great Doctors and have terrific bedside manner for me. Since my PSA shot up to 47 in a very short period of time, I drove from Philly to NYC to begin Firmagon injections on May 8th. Dr. Danila recommended I establish a relationship with an oncologist in Philly. He also prescribed a CT scan, an FDG PET scan which confirmed Mets throughout my skeleton.
I went to see Dr. Kelly at Jefferson last Thursday. He was also terrific. The only difference between the 3 was Kelly and Oh suggested immediately that I add Zytiga as soon as we can get it ordered. Danila said in the first meeting that we should start with Degarelix (Firmagon), move to Lupron for the 3 month frequency and then see what the next step would be.
As I walked into the meeting with Dr. Kelly, Dr Danila called him on the cell phone. It was great to find out they have a long and personal relationship. Dr. Kelly apparently convinced Dr. Danilla that adding Zytiga sooner rather than later was a good move. So it is ordered. We will see how long it takes to prepare the pills.
I have tolerated the Firmagon well and asked Danila and Kelly if I could stay with that rather than switch to Lupron. Monthly injections vs quarterly makes no difference to me.
so why change unless the results prove are not what we hope for. They both said that was fine and said there was really no differenc other than convenience. I think I have seen comments and read articles that there may be slight differnces.
I am taking a Nuclear bone scan tomorrow. The location is near my Daughter and 9 week old granddaughter, so I was hoping to go see them while waiting the 3 hours between the injection and the scan. It occurred to me that having the radiotracer in my system might be a problem with the infant. The first person (a tech) I asked said no problem. It seemed like a place for an abundance of caution so I reached out to the Doctors office and they said I shouldn't hold the baby. I cancelled the visit and decided if holding the baby was a problem, I would avoid being in their home. I am not sure why that depressed me. Since, being diagnosed I have worked hard to be healthy and physically fit. I think the symbolism in my mind of being poisonous for my precious granddaughter produced an outsize reaction in my head.
All these tests have confirmed that there is no evidence to date of tissue or organ involvement. Hopefully, we will aggressively deal with the skeletal Mets and it will hold it in check for as long as possible.
Another interesting point of information is that they scheduled my injection and scan 6 hours apart. They had said it would be 3 when I made the appointment. I called to ask about the extended time period and asked if the radiotracer would work the same way after 6 hours. Turns out the answer is no 6 hours is too long. They made a mistake which is now fixed.
My friends and fellow Pca club members often make fun of me for asking too many questions. The oncology group at Penn fired me for that reason. This note contains 2 examples where asking questions avoided mistakes. The service providers work under tremendous pressure with countless moving parts. I let the Doctors make the decisions but make sure I understand the thoughts behind it and the process.
Just beginning the second phase of this journey and it helps me to read the things others share.
I have been more emotionally troubled over this last month than the year and half preceding it. My Dad died from Pca 35 years ago today at the age of 60. The visions I get when I close my eyes are of a 6'1 225 physical specimen shriveled up to about 100 lbs. I am intellectually aware the world of treatment is completely different now, and there is good reason to be optimistic. He suffered as much or more from the treatments then as he did from the disease. As I begin the process of these treatments which have side effects it will take me a while to move past the sadness associated with reliving the last 6 years of my Dad's life in the late 70's and early 80's.
My thanks to all who participate in these discussions, the value is tremendous. My apologies for this personal venting. There is probably not much value for the group today, but it was therapeutic to articulate my thoughts.
Hope you are tolerating the Zytiga well...I have been on it for 7 months and working well for me so far....depending on the number of mets you have, if less than 5, there is a trial for oligometastatic recurrence at NCI and for 4-10 there is SABR-COMET-10 trial... there is some evidence that radiation with ADT is synergistic ...worth looking into IMHO--here is the oligo-recurrent trial:
I haven't started Zytiga yet. I am likely to start by the end of this week. First injection (double) of Firmagon on May 8. I am taking Lipitor for 3 months now. Also Metformin but my sugar has elevated dramatically since the Firmagon injections. I track it every morning. I am anxious to get started with the medication as I think the cancer which was in check in the fall is now a fireball. I remain asymptomatic but my gut says it is taking off.
Zytiga first order has been a little bit of an adventure. The hospital specialty pharmacy said that the price is $9300 amonth and it is the same with my prescription drug plan. Turns out they are wrong. It is about $4300 a month through the PDP preferred provider (CVS). The donut hole is the same but 5% per month co-pay is a significant difference. I am waiting today for confirmation. Illustrates the necessity of checking everything twice.
Thanks for the information about oligometastatic recurrence. I think I am beyond 5 METs but since none are causing pain I will ask at the follow up on June 6 about whether there is a grading of METs that might affect treatment options. I believe it is still early for my lesions.
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docrok; 15 year update. Rising PSA, Pet Choline Acetate Scan test results Mayo Clinic, Minnesota. 
PSMA PET SCAN AND PSA
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Axumin PET scan with undetectable PSA
Fallout from PET/CT Scan
