An update on my latest test results, by way of background i finished my "on phase" in June 2012 and was undetectable until May 2013 when PSA rose to 0.022, it went to 0.065 in June and 0.095 in July doubling times of circa 21 days ,then 2.5 months, unfortunatley my test on the 26th September was 0.37 so a big jump almost a fourfold increase in 59 days. So as you can see the bandit is back with a vengence.

I am being philosophical about it, i will wait for another 6 weeks and see if it remains on an aggressive growth path but my "on phase" looms large and much earlier than i had hoped for. My Oncologist and i are debating what the right number is to restart and or when and if to have scans if we restart under a PSA of 2.

I will keep you posted on what the number look like in mid November.

VascodaGama said:

Striking birdies

 

Traveler

I know your feelings and I am sorry for the increase. I think that you should consider getting another PET/MRI before starting HT. The threshold of your doctor should consider the latest capabilities of the modern equipments.

I take our cases as similar with similar paths (and ages). Your treatment protocol has been different than mine but the clock to re-starting ADT may have equal assessments.
My oncologist has set me to re-start ADT at a threshold PSA of 2.5. In any case he is not considering any possibility on cure. He takes me as systemic and disregarded the worthiness of any image study.
I think that he is out of touch with the latest methodologies and theories on the Oligometastatic cases. There are already enough “materials” to plan a series of tests to look for and find the cancer. My opinion is that we should try to get the upmost benefit of the latest’s examinations. ADT will do the job again if we lay down T to castrate, no matter in which level the PSA is at the re-start if it is under the 10th mark.

I have recently talked with the radiologist of my SRT to get details on the RT protocol (areas and Gy level) he did back in 2006 to access any possibility in radiating over the same areas again. For my surprise he told me that they are also doing these latest tests with the C11 choline to find cancerous tissues. He commented about the relationship between the fast increases of PSA (short PSADT) which is related to periodical inflammations of the lymphatic nodes.

The practical theory is that our body fights the cancerous cells once these get into the lymphs and react against the “immune-cleaners” (anecdotally, they do not want to be turned into trash materials). The fight causes temporary inflammation, big enough in size to be detected by a scanner, and it promotes the cells to expel more PSA serum.
Accordingly, the condition could serve as the trigger for a C11 PET/MRI scan, even at low levels of PSA. In any case, I think that these tests should be done at more practical higher levels of PSA closer to the 4 ng/ml marker. 

In the past, famous oncologists would suggest re-starts of ADT with trigger levels of up to PSA=10.00ng/ml. The traditional was a PSA=5 to aggressive cases and PSA=10 to cases with history of indolence. However, this included all guys indiscriminately of previous treatments. (with or without the prostate)
A famous G7 patient, this year on his 14^Th year of survival, who chosen IADT as his only and solo therapy (prostate in place), now with three Off periods accomplished, reported to re-start ADT at PSA level of 10. He also had fast increases of PSA at the fourth month point when the effects of Celebrex or Thalidomide stopped.
He managed to have vacations periods of over 20 months, before reaching the PSA of 10. His T level increased to high numbers of 800 (8.0 ng/ml).

I believe that continuous IADT protocols are the perfect treatment for systemic cases but one must be properly diagnosed as Systemic with the best available methods at that particular time, because “things and methods” change to adopt the newer ways. I think you could explore conditions for the USPIO and the F18-FACBC PET, discussing it with Tucker in your next meeting.

Best wishes for many “birdie winning” games in this “long course” of your journey.

 

Regards

VGama 

 

Vasco,

as always wise counsel.

I will look into the scans you have mentioned so that i am up to speed when i next meet Dr Tucker.

I also received my CTC result yesterday, this has fluxuated between 0 and 1 for the last 18 months and jumped to 7 this time, 5 is the cut off point above which metastatic disease is evident. I think one of the good things about the jump is i beleive it is clearly testosterone driven, my T score has jumped from castrate levels in June 2012 and 1 in Feb this yr to 22.4 in the last test so it is fair to assume that when i go to "on phase" my PSA should drop again.

I agree with you that it would be good to be able to identify the bandits location.

More research to do!!

Many thanks for you detailed response.

Traveler

traveler said:

Bandit spotted:

Since I last updated you on my PC post the IAD off period started my PSA results have been as follows.

 

 

 

 

·      On Sept 30^th my PSA was 0.37

·      On Oct 29^th it was 0.791

·      On Nov 27^th it was 1.391

·      On Dec 13^th it was 1.563.

This shows a doubling time of circa 1 month so very aggressive.

I had agreed with my Oncologist that we would do a scan on Dec 13^th also and we have decided that I will restart IAD on Mon 16^th Dec with 3 month Zoladex , Proscar and instead of Casodex we will try Xtandi this time given the great results it appears to be having.

I got the results of the scans today (the scan we opted for was a F18 Fluromethycholine PET/CT study) the results identified an area approx. SUV 7.7IM 2-186  on left Ischium (in the pelvis) interestingly this is the same spot where something was identified in a scan I had at Sloane Kettering in 2011 but it was to small to be certain of its type or nature.

Although I was due to see my Oncologist on Monday he contacted me today (Sat) and asked me to call him. He feels we should go for targeted radiation to this spot as well as restart the IAD. I am both excited and nervous. Excited because we have identified where the PC is ,nervous because I have had salvage radiation therapy and worried about Rads on Rads. My oncologist seems positive that because this in not in the prostate bed that they can target this area safely but he wants time to review the best option on where to undertake this. As I feel this is a one shot opportunity I really want to get the best advice and find the best location to have this undertaken.

I remain concerned about damage to bladder or rectum from radiation given these would have been hit with the salvage radiation therapy after biochemical relapse post RP.

Any information anyone has about the best-equipped clinic/ latest equipment for targeted radiotherapy and or radiologist who has the best reputation please pass on your information it is gratefully received.

I also am a realist and no that this may just be the largest of a number of micro mets not yet identifiable.

I can see that a lot of research will be undertaken over the festive season.

More will be posted after my consultation on Monday.

 

Further to my last posting : i met with my Oncologist today and we agreed that radiating the Met found on my left Ischium makes sense. I restarted HT today with Zoladex (3 month shot) and Xtandi, we will aim to radiate in March before my next shot.We had a wide ranging discussion on options available and there are a number to be considered, In the mean time my Oncologist is going to research the options we discussed further,  and also ascertain if we need to map the area now (beyond what is shown in the PET/CT scan) ahead of any future treatment as obviously come March it is unlikley the Met visable today will be  able to be seen on a scan if the HT is working.We are going to discuss options as information becomes available to assess but we aim to lock in a plan by mid Jan. It looks like i will head to the US for the next phase of treatment.

As we go through our evaluation process i will post thoughts / discussions had and invite comments suggestions.

Many thanks

T 

mrspjd said:

Note to Traveler

 

T,

You seem to be well informed about your status and I was impressed with the info you documented to date. For the record, my intent in asking questions about your diagnostic imaging was sincere and based on your invitation for comments and thoughts about the info you posted. If I misinterpreted your request or my questions were somehow misplaced, then please forgive me. My intent was simply to confirm my understanding  of the info you shared (from your perspective) and in doing so, I hoped to learn more about your recent choices and decisions. Perhaps others might also. The questions I posed did NOT have anything whatsoever to do with 2nd guessing the path you've elected going forward. Surely the situation that you're coping with is stressful enough. If in any way I infringed upon your thread, then please know that was never the intent. 

 

I hope the info I provided about Dr King, the radiation oncologist (RO) in SoCal, proves to be helpful to you or others. As before, I wish you all the best as your journey continues. 

 

mrs pjd

 

mrdpjd

i am sorry for the delay in responding, i have been on the move and away from my computer. Firstly you have no need to apologise your advice was most welcome.

On the question raised, my earlier scan (post triple blockade ) was a C11 Choline /acitiate though as my files are in transit i cant give you the exact detail. We opted for the F18 this time based on a view that there were less false positives on low PSA with this marker. Again i cant quote the studies.

On next steps after discussing this with my MO (Dr Tucker) we have opted to use UCLA , my discs arrived there this morning and i am due to have a conf call with them in the next few days to discuss treatment plans. This is with Dr's Steinber, Kaplin and Cox , so i think i am in good hands and Dr Tucker who i have great respect for knows them and as he hails from LA we chose them over Dattoli.

Vasco

Thanks for your again insightful comments , and i am hoping that the plan in development allows me to have a sucessful outcome.

Not sure if my route will take me via Europe but if it does i will make sure i drop in at the Algarve for that glass of red to celebrate your good news.

I will keep you posted.

Many thanks to all for your assistance and comments.

Happy holidays

mrspjd said:

UCLA etc

Tra

Thanks.  Prior to your recent F18 FCH PET/CT study, it’s a little unclear exactly which specific diagnostic imaging studies you’ve had and when (timeline), corresponding to PSA values pre ADT3, IADT3 on-cycle, and IADT off-cycle while on Proscar.

 

You noted that Proscar was continued and Leukine started in the IADT off-cycle.  5-ARIs such as Proscar and Avodart are known to decrease PSA levels by approx 50%. If on Proscar when the F18 FCH imaging was done Dec 13, your adjusted PSA value actually may have been higher than 1.563, possibly double, +/-3.  I wonder if this might explain the high uptake value in the context of a “seemingly low” PSA (<2) when the test was taken.

 

Apparently, the F18 FCH study confirmed a lesion on the left ischium, the same location that a previous imaging study (perhaps the C11 acetate PET/CT) found a suspicious spot post ADT3, but sometime before the F18 FCH study, and also at a “low” PSA value while off ADT and on Proscar.  You indicated “this is the same spot where something was identified in a scan I had at Sloane Kettering in 2011 but it was to small to be certain of its type or nature.” And also wrote “In June 2011 (aged 60) I started CAB my PSA was 1 at that time, prior to the start of hormone treatment I undertook PET/CT scans all of which were clear.” And, “…my earlier scan (post triple blockade) was a C11 Choline /acitiate...” I wonder if/when an F18 Na (sodium) PET/CT study was ever done and if so, how the findings compared with those of the F18 FCH. It's a good idea to retain copies of your PCa medical records for your personal files and reference.

 

With one “hot spot” identified and the fact that you’re asymptomatic for SRE (Skeletal Related Events), the hope is that targeted RT would be with curative intent, rather than palliative.  However, as you’ve commented, and I agree “…I’m a realist and know that this may just be the largest of a number of micro mets not yet identifiable.”  Xofigo (aka Alpharadin, Radium 223) was FDA approved this year with a specific indication for late-stage, castration-resistant PCa with metastases in bone but not other organs. This option may be a consideration down the road and worth a current discussion with Tucker or PCa oncologists in the States.

 

Your concerns about the potential for rads on rads toxicity and/or collateral tissue damage are real and understandable due to your previous SRT post RP and the anatomical location of the lesion.  It’s wise to seek a team of experienced world class ROs & radiologists at a medical center of excellence, such as UCLA, to evaluate both the efficacy and safety of targeted radiation to the spot identified on the left pelvic base. After suggesting Dr King at UCLA, you indicated an upcoming phone consult was scheduled with Steinberg, Cox and Kaplin at UCLA. Steinberg is well known. What are the specialties and department affiliations for Cox and Kaplin at UCLA?

 
Dr Michael Steinberg, FASTRO, FACR, FACRO, is Chair of the UCLA Department of Radiation Oncology.  IMHO, he has assembled a world class RO dept by recruiting the best and the brightest in the field of radiation oncology to form a world class "brain trust" of RO experts at UCLA (including Drs King, Kupelian and others). Steinberg, collaborating with his RO team and radiologists, will evaluate your imaging studies & medical history to determine if the location of the isolated met can be safely/effectively targeted with either SBRT or IMRT. Unlike some other RO clinics that offer IMRT but not SBRT, UCLA’s medical center has both IMRT and SBRT technology available in its RT arsenal, as well as other forms of RT. Dr Chris King, formerly at Stanford, is best known for his work with SBRT and, if SBRT is indicated, he may oversee dosimetric planning.

 

As you’re aware, restarting the ADT cycle on Dec 16 may lower PSA and shrink the current lesion over the next 4 months, making it less well defined on any subsequent image study taken in March, when you plan to travel for possible tx.  Advanced imaging studies like the C11 Choline or acetate, taken at low PSA values (</=2) may make findings unreliable and it is often recommended that the patient be off ADT at the time of C11 Choline or acetate scans.  However, I understand your decision to restart ADT and the double edged sword dilemma if you didn’t.  With this in mind, even with the pelvic met “area mapped out” or outlined on films from the December F18 FCH study, most medical professionals/institutions, including the UCLA team, will likely require that you undergo an advanced imaging study, such as a C11 acetate PET/CT, at their medical center prior to any tx they provide.  This is necessary for optimum therapeutic RT planning in order to compare, verify and confirm the findings from other medical institutions.  Precise target planning and dosing are critical to avoid an undesirable outcome of over or under tx. An imaging study prior to tx may identify adjacent areas of involvement that could make focal RT impossible without risking collateral tissue damage & serious side effects.  Or, it could identify other suspicious lesions that also might be candidates for targeted RT.

 

It’s important to understand and consider all factors that make up the big picture with PCa, as you’re doing.  Here’s hoping that the location of the isolated lesion(s) can be focally tx’d and the outcome is successful.

 

Best,

 

mrs pjd

wife of a T3 stage PCa survivor

Mrs Pjd firstly let me apologize for misspelling your name in my last response, I was clearly having a bad day at the keyboard in a number of ways (misspelling other names and incorrectly naming others in that posting, end of year fatigue maybe!). You make some good points about my scans and the impact of Proscar on both the scans and my PSA. The scans I had at Sloane Kettering were pre any hormone treatment and with a PSA of 1 so not surprising the matter identified was not clear enough to be classified. At time they recommended an endorectal MRI to be done and fused with the CT/PET if radiation was to be considered. I can confirm that I am now scheduled to go to UCLA on Jan 21st and will begin simulation and consultation. I understand that to name Dr’s on the forum is frowned upon but I am seeing all 3 of the Dr;s you mentioned. I requested that they all be involved in either setting the treatment program or reviewing it and allowing me to discuss it with each of them, and they were fine with this approach. On the basis of an initial review of the Dec 16th scan the feedback from UCLA is I will need 1-3 treatments to sterilize the lesion ,prior to treatment the planning/ simulations will involve having an endorectal MRI and may require further PET/CT depending on what the fused images show. In the course of email exchanges /discussions on timing (including with my MO)it has been agreed that treating sooner might be better and certainly no worse than waiting until end of March. The plan is that on the 21st Jan I start the consultation / simulation process which will take 3-5 days and the treatment will flow on immediately following, so hopefully by the end of Jan I will be finished. Clearly I will remain on ADT3 until Dec 2014 and hopefully my PSA will drop to undetectable in the next 3 months and remain that way during the “on phase”. Once I go to the next off stage we will then be able to see if the program was successful. To be honest my biggest concern remains the side effects of rad on rad and that is an area where I will be focusing my questioning when in LA. I will keep you posted on nest steps on my journey. A Happy New Year to everyone Kind regards Traveler

nuclearduck said:

Thanks for great information

I would like to thank Traveler, Mrspjd, and VascodaGama for their comprehensive and insightful information about Traveler's treatment.  I have been undergoing HT for the past six months and, after experiencing PSA less than .008 for that time, have just seen a rise in the PSA indicating that at least a portion of the Pc has become hormone indepent.  The various posts in this string have given me excellent options which I will be discussing with my oncologist.

Firstly many thanks for the kind words, advice and encouragement from all especially VG who is unbelievable and tireless in his support too so many on the journey we all find ourselves on.

It is now 3 months since I started my second "on phase" of IHT and 6 weeks since my SBRT session at UCLA.

My latest blood tests have shown my PSA at 0.01 down from 0.04 in Feb, I had a bounce in my T to 1.8 but this occurred at the 3 month point in my first “on phase” and then dropped back so I expect the same to happen this time.

My cholesterol has risen but I had to switch from Lipitor to Crestor because of the interaction with Xtandi and in doing so dropped from 20mg to 10 mg so I am now going back up to 20mg. My family has a terrible history of heart disease so regardless of diet and exercise I am genetically predisposed to high cholesterol, something i need to keep a careful watch on.

The good news also, is my CTC (circulating tumor cell) score has been “0” for   3 months in a row, while it is not perfect test it is a positive indicator.

I am continuing with my exercise program and have lost 1 kilo and while that might not seem much, in the prior cycle I gained 6kgs in the first 3 months so I am hoping I can keep the weight gain out of the picture this time around and more importantly I have not had to ban red wine to do this, which is always a bonus!

I have had my second Zoladex 3 month shot yesterday and will post and update in 3 months time at the half way point of this second "on phase" of IHT.

Once again thanks again to everyone for your support and good luck on your individual battles with the Bandit!!

T

VascodaGama said:

Yet another excellent update

Traveler

It feels good to read your good news. I hope you return again in three months time with yet another excellent update. 

You have not shared your treatment protocol in this second "on phase" of IHT. Is there any fixed period for the use of Zoladex? What are the other meds you are taking?

Regarding statins, I am taking on/off periods of Sinvastatine (20mg/day). I knew of meds interactions but thought that the typical statins taken in lower doses would be OK with Xtandi. Thanks for mentioning about your experience with Crestor. Dr. Myers also advice Crestor (rosuvastatin ) for guys taking Zytiga with the intent to help Zytiga in being more efficient in blocking the CYP17A1 used by the cancer to produce own testosterone. In other words, high cholesterol (LLD) goes hand in hand with HT refractory.

Due to your risk (family history) of high cholesterol related problems, you may be interested in listen to Myers video explaining about the effect of High Cholesterol, Cancer and Zytiga. Here is the link;
http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonvajBZKXonjHpfsXx6OosT/rn28M3109ad+rmPBy+24MIWp8na+qWCgseOrQ8lV4JV8e/Us0RraQ=

In this link you can also read about the opinions of statins users comparing Crestor with others;
http://www.medhelp.org/posts/Heart-Disease/Crestor--vs--Simvastatin/show/1420140

Red Australia wine, yes yes……….., I had it and paid many corkage-fees in Sydney’s take-a-long restaurants. 

Best wishes for complete recovery and a good final outcome.

VGama 

I am providing an update as I had blood tests early ahead of a long planned holiday, the next update wont be until June.

My PSA fell again to <0.008 which is the same low point it reached in my first round of IHT and my T dropped back to 0.9, my cholesterol also has started to fall after increasing the Crestor to 20mg.

In answer to VG's question, my medicine program now is as follows

·      Xtandi 160mg per day

·      Proscar 5mg per day

·      Celebrex 200mg per day

·      Zoladex  (3 monthly)

·      Xgeva 120mg (denosumab) monthly

·      Supplements

o   Curcumin 800mg per day

o   Pomegranate 800mg per day

o   Vitamin D3 3000 IU per day

o   Fish oil 3000mg per day

o   Resveratrol 250mg per day

o   CoQ1O 100MG per day

o   Calcium 600mg every second day

Right now I am feeling fine no side effects, I am having to work hard to force myself to exercise and focus on keeping my weight under control.

I had hoped to keep losing weight but have leveled out in the last 3 weeks.

Just to put this in perspective when I started the first phase of IHT I weighed 82kg, at the end of 12 months I was 94 kg , I am now back to 82kg and want to get back to 80kg and long term to 75kg ( my height is 1.75m).

While I have been walking circa 70-100k a week I need to focus on some resistance exercises to stop muscle wasting so while keeping weight under control is important it is also important to look at BMI to ensure muscle is not being replaced by fat.

Good luck and Best wishes to all on your respective journeys

Kind regards

T

VascodaGama said:

At even-par

Traveler

 

Congratulations. I hope the stress has dissipated with these latest results. You are at even-par. Will you aim the birdies?
But …………… do you need more? You are a winner already. 

 

Thanks for sharing your treatment protocol. It seems to be the typical Total Blockade (ADT3) with Xtandi replacing Casodex. Both are antiandrogens but Xtandi is more “refined”. It works at intratumoral levels. The Celebrex (COX2 inhibitor) was big news back in 2006. The famous STAMPEDE trial for the use of this tumour growth inhibitor was incomplete in my view and has shown little effects, even at daily doses of 400mg, but some patients managed to get high points in the control of advanced PCa. At the time I checked about possibilities for my case of micro mets but opted to continue with the daily aspirin 100mg. Xgeva may have been added to the protocol to help in bone “repair” after radiation (???).

The list of supplements seems to be the best and complete. CoQ10 100MG become big news in 2005 after a Spanish trial have shown that CoQ10 managed to lower PCa cells growth without affecting cell growth in the non-malignant cell lines. Our buddy Charles (Chuck) Maack from the PCa support group at Us TOO has an interesting blog with the views of Dr. Myers and listed articles. I provide the link below to the many reading your thread and that may be interested in your treatment. The title is COQ-10 (COENZYME Q-10) – GOOD OR BAD?

http://www.ustoowichita.org/pdf/COQ-10 GOOD OR BAD .pdf
http://www.ustoowichita.org/

The excellent outcome in this start of the second phase of IHT (with first line HT drugs) shows that you got “extra options” for the fight, would that become necessary. I hope you do not need it but I say this because of your concerns commented in your post above. You say;

“…I am a realist and know that while only one spot showed up on the PET/CT scans there are likely more micro mets but I am also an optimist …”

Any future PET/CT examination may give you peace of mind, in any case I believe that the spot RT eradicated the bandit and that now you should enjoy and engage in things you like doing best. Enjoy and celebrate. 

 

Best

 Vgama 

 

Hi everyone, I am a regular reader but have not posted for a while.

In my last post I had undergone SBRT for one met identified on my left ischium, this occurred at UCLA under Dr Steinberg a marvelous man and a marvelous institution.

At the same time I restarted IAD program consisting  3 month Zoledex, 160mg of Xtandi daily (as opposed to Casodex which I used in my first “on phase”) and 5mg Proscar.

As I mentioned in my last post my PSA dropped to <0.008 within 3 months (March 2014) and has remained there ever since.

I am now in my “off phase” having finished the hormone treatment in Dec 14. I still take proscar and inject Luekine 14 days on 14 days off, to stimulate my immune system.

During the last “on phase” my weight increased again, back up to 90kg and I noted muscle loss also.

Unfortunately I have injured my back and this has caused problems in my hip flexor and ITB that makes walking painful so my exercise regime has suffered. I am having Physio 3 times a week and things are improving but it is a slow business (over 3 months so far). I have detailed this because I feel that muscle loss is cumulative and we all know that past 40 it is harder to replace muscle and much harder past 60 (I am 64) but when you go through hormone treatment I now realize you have to do much more gym work on resistance exercises if you are going to arrest the decline.By this I mean 1-2 hrs daily for 3-4 days a week of some form of resistance exercise.

I had very little side effects during the on phase, at first the Xtandi made me tired but when I switched to taking it in the nighttime these side effects passed.

My hope is that I can last longer on this “off phase” than the last time but I am also a realist and know that the “bandit” in the form of dormant cancer cells is still likely lurking in some dark corner. The CTC count oscillating between 0 and 1 evidences this.

During the year I had the good fortune to meet Vasco and his beautiful wife in Portugal, he is as kind and considerate in person as he is in his virtual world.

I enjoyed his company and we discussed many of our shared experiences over fine food and wonderful red wine. I can tell you he is building a beautiful home in a wonderful orchard where he has planted many exotic fruit trees from his second country (Japan)

I hope to get the pleasure of meeting him again in the not to distant future.

I wish everyone the very best and I will continue to post updates on journey as we fight the Bandit!!

Best Wishes

T