PSA velocity in Top Gear – I’ve to cut short Drugs’ Vacations

VascodaGama said:

Unsatisfactory consultation

In continuing my saga of increasing PSA, I report here the meeting with my uro-oncologist;

The consultation was not without surprises. According to my doctor, the worrying PSA velocity is OK because I am on complete drug’s free period (no maintenance medication). I was looking for a much longer period of vacations but he pointed out that I am a systemic patient. I will need “constant” control to pin down the bandit. His words; “Try learning to enjoy the moments without medication to the fullest. Think of it as a gift”
Well ! I did not like that comment.

My professional life involved numbers and calculations and I would think that I am right to think that the IADT threshold limit of 2.5 ng/ml of my increasing PSA (established by my doctor previously) will be reached in July of this year, but he wants me to restart IADT in September. This is according to my exponential numbers a level of 10. Did he changed his mind?

Regarding the protocol, he recommends me to continue with Eligard 6-month shot preceded by two weeks on Bicalutamide, and continue with the antiandrogen daily (50 mg). This is the typical IADT2. I question about adding Avodart but he said that the biggest volume of DHT (dihydrotestosterone) is synsitized at the prostate gland, which is none existent in my case. A small portion is converted in the adrenal gland and testes; however, he wants to see if we manage to get “control” with lesser drugs. He also commented about the usefulness in future of alpha blockers.
I was eager to listen about drugs to avoid angiogenesis such as Thalidomide but he become silent.

Next meeting is scheduled for May 2014. I will continue periodical PSA and T tests, as well as the Dexa, ECG and lipids. He does not see it necessary to have additional Bone scans or MRI for the moment. (I am not so sure about that.)

In conclusion; I am sceptical that this doctor is proper to continue assisting my progressive case. I know he is giving preferences to quality of life more than being more aggressive, but he seems to be too conservative and not in touch with the newer ways of seeing hormonal treatments.
I am not aware of any beneficial principle of using a PSA=10 as a threshold in IADT for guys with no prostate, particularly if the protocol is just double blockade. No comments about supplements or other means of added control.

I am not satisfied. What do my comrades think about the above?

It may be time to sail to other waters and look for a better oncologist. Maybe restart the time of the Discoveries as did Vasco da Gama in the old times.

Regards to all.

VG 

Vasco,

Sorry to read that your IADT “off” cycle may be shortened due to your PSA rising more rapidly than anticipated.  As always, you’re being proactive, researching your options and soliciting advice.  

When medically indicated and as you know, conventional diagnostic imaging tests are utilized to locate localized and/or distal PCa mets, i.e., the source(s) of rising PSA.  In come cases the source may be isolated tumors (oligometastases) and treatable. Other times, the disease may be systemic. Conventional imaging tests may start with a bone scan and a pelvic CT (with & without contrast).  Depending on findings, tests may progress to include an MRI and/or EMRI (using 3T technology).  Sometimes a CDU (color Doppler ultrasound) may be utilized.  When conventional test findings are negative in the context of recurrence with rising PSA, IMHO add’l imaging should also include an F-18 sodium PET/CT.  I wonder if you’ve had one.  However, since current conventional imaging technology may not detect micromets (undetectable microscopic metastatic cancer cells) in bone or soft tissue, diagnostic findings from conventional tests may turn out to be negative, despite a rising PSA.

In your case, with a rapidly rising PSA during the “off” or “vacation/holiday” cycle of IADT, and if all conventional diagnostic test findings (including an F-18 sodium PET/CT) are negative for mets as you seem to indicate, I strongly recommend that you consider the C-11 Choline imaging @ Mayo Clinic (MN).  Mayo does not use the Choline acetate injection. In fact, the FDA has approved Mayo as the first facility to manufacture the Choline C-11 injection:  http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm319201.htm

Since the C-11 Choline is a functional imaging test, it’s best to be totally off ADT for the imaging, as you are now during the “holiday/off” cycle of IADT.  Mayo’s C-11 Choline scan may be performed with a “low” PSA recurrence level of =/>2.0.  The C-11 Choline imaging can assess the body’s soft tissue/organs including, and not limited to, lymph nodes.  Here’s the link to Dr. Kwon’s presentation about the C-11 Choline PET/CT: http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/   Also, here’s an older, but interesting discussion (be sure to read the comment section) on the C-11 Choline @ Mayo:  http://prostatecancerinfolink.net/2012/11/04/more-on-11ccholine-petct-scanning-in-men-with-recurrent-prostate-cancer/ 

While still somewhat experimental and certainly not a “silver bullet,” in my lay opinion, the C-11 is the best we’ve got right now for men with your PCa stats.  Again, BEFORE resuming the next IADT “on” cycle, the C-11 Choline Imaging at Mayo should be a strong diagnostic consideration if at all possible (considering your situation & geographical location).  I hope you and your (new?) medical team are soon able to find answers to mitigate your current situation. 

All the best to you and Mrs Vasco.

mrs pjd, wife of a T3 Stage PCa Survivor  

VascodaGama said:

Developments in my progressive case

 

Dear Mrs PJA; Thanks for the helpful support. I have been investigating exactly about the types of image studies that could be beneficial in verifying any possibility of means to control my progressive case.

Dear friend Jack (Jogger); Thanks for alerting me of the importance of supplements. Your note has “awaken” my interest in checking for possibilities in the world of supplements, another way of therapy. I fact I never pondered that one day I would need to be rescued by an holistic treatment. Maybe I was not expecting that to occur so soon.
In this little corner of Europe where I live, the food and natural produces are just the ones recommended as good in all cancer books. But as you describe a daily diet would not provide me with the “quantity” of an element needed to cause an instantaneous positive result.
I think I will be looking upon Pomegranate, Curcumin and Vitamin D. What would you suggest to add?

 

My good news is that the PSA doubling time has slowed down to 2.5 months. The last tests (Jun3) come as PSA=0.71 ng/ml and Testosterone=3.84 ng/ml (384 ng/dL). I am asymptomatic, slimmer, boobs have disappeared, got my strength back, full size balls and full libido. I am very happy. 
In recalculating PSA progress, I can now expect to reach the threshold PSA of 2.5 in October 2013. This is the milestone in my intermittent marker to restart the hormonal treatment.

The fact surprised me and I feel it difficult to draw a conclusion for the slowdown process. But since the last two weeks (after reading Jogger’s post) I have restart taking a daily statins (Sinvastatine 20mg) which is known to influence cancer progression. In any case, the slowdown of the progressive process started with the PSA of Mar19 (0.37) to Apr29 (0.55) and then to Jun3 (0.71). This corresponds to PSADT of 1.1 to 1.6 to 2.5 months. Initial results were indicative of a PSA=2.5 for June.

 

This post may be bordering my comrades for being so long but I write to the ones in similar shoes that may benefit from my narrated experiences and fidings.

Recently, I have been “thinking” and trying to get to terms with this new phase of my progressive case. Friends however have encouraged me in looking positively to a possible cure. I think of it as a dream because I have been diagnosed with a systemic case. Cure would be possible if our scientists find a Silver Bullet (as posted by Mike-Samsung above) or if I manage to find that the diagnosis is incorrect. So far all image studies done along the 13 years as a survivor, have never detected cancer. I have been symptomless and the only marker indicating cancer activity has been the PSA. Salvage radiation and HT were decided with references to the doubling time of PSA, velocity and doctor’s thresholds and typical therapy administration. In other words, everything has been done on guessing without focusing on the cancer itself.

Probably I am not seeing the facts straighten but I am not sure if there is still a possibility of killing the bandit. The newer image studies (commented above by Mrs PJD) are better to detect micro cancer colonies however, that requires higher PSAs above the 2 ng/ml mark, being 10 the preferred level in cases of micrometastases. I could let the PSA rise freely to those levels for the “photo shoot”, but, even if I manage to get a picture of the bandit and its location, to “zip-out” the culprit I would have to radiate areas that have been already radiated in my past SRT. This is not impossible but very difficult and risky. We are talking about oligometastatic cancer spots localized at the lymph nodes, which in my case were dissected in RP (9 numbers out) or radiated thoroughly in a detailed isodoseplanning. Spots at far places would be easier but more difficult to assure cure.

Accordingly, instead of giving up with the dream of a cure (due to the difficulties in the process or still due to Rad over Rad), I have decided to investigate about the tests in Europe and found that C11 Choline, C11-Acetate and F18 are used at four locations. In Germany they do C11-Choline in a sophisticated Siemens PET/DW-MRI machine, since 2011. This uses the latest technology in scanning with 3 Tesla capabilities. In Holland they do C11 choline PET/CT and also Ferumoxtran MRI (similar to the Feraheme MRI done in USA) known as Ultra-Small Paramagnetic Iron Oxides (USPIO) Test. Other places are in Italy where they do the F18-FACBC PET scan, and in Swiss they do C11-Choline MRI. I also got places doing spot SK radiation (England, Sweden, Germany and Spain).

Information from a friend sets the capabilities of the tests; being the best the F18-FACBC PET scan because the system is able to detect tumors that are about half the size of what C11 Choline or Acetate PETs can detect. F18 is not nearly as good as C11. Choline or Acetate PETs often miss lymph node metastases that Feraheme/Ferumoxtran MRI can find. Experts and researchers say that the PSA should be in the range of 2 to 3 ng/ml for detection to be possible. A Dutch researcher named Dr. Fortuin compared C11 Choline PET to ferumoxtran MRI, and found that the MRI detected tumors as small as 4.9mm, whereas the PET minimum size was almost twice as big -- 8.4mm. The MRI detected cancerous nodes in 61% of patients, whereas the PET only detected 31%.
http://www.ncbi.nlm.nih.gov/pubmed/22417806

 

Here's the reference in regards to the benefits of F18-FACBC PET scan:
http://www.ncbi.nlm.nih.gov/pubmed/23591953

In resuming, I think that we are “presencing” the future way to diagnose prostate cancer. This is an incredible improvement from the ways back in 2000. One question remains for those patients with micrometastases (unfortunately this is my case). If the present contrast agents got still limitations in detection sizes (micro colonies), then false negative results will be most evident.
It is logical then to think that in a diagnosed case of micrometastases, a patient would not be free from future recurrences. The image study could accuse some small sized tumours but still negative in detecting already existing micro-tumours of millimetric sizes. Adding to this will be the problem in radiating the some area of previous spot radiation.
I wonder what Dr. Datoli would do when confronted with such a case. 

 

Confusing but a point to think about.

Best to all.

VGama 

 

Vasco,

Sorry for all your uncertainty.  Seeing how you research things, I feel, that the rest of us are going to get an education about thebandit.  I hate the reasons for it and am hopeful for a great outcome. 

Youalready have the best diet, your wine is great, the country is beautiful, and few people realize that this is one of the greatest healers for illness.  First thing they tell you with any bad disease, or surgery, is rest , remove stress, and so on, but everything points to a nice European country.  I would pick Allihes Mines, in county Cork, IR.  

Anyhow I wish you well, and I am sure everyone who comes to this site will benefit from your knowledge.  

Please take care as alot of us, although we never met, really like you and love your posts.

Mike

VascodaGama said:

Developments in my progressive case

 

Dear Mrs PJA; Thanks for the helpful support. I have been investigating exactly about the types of image studies that could be beneficial in verifying any possibility of means to control my progressive case.

Dear friend Jack (Jogger); Thanks for alerting me of the importance of supplements. Your note has “awaken” my interest in checking for possibilities in the world of supplements, another way of therapy. I fact I never pondered that one day I would need to be rescued by an holistic treatment. Maybe I was not expecting that to occur so soon.
In this little corner of Europe where I live, the food and natural produces are just the ones recommended as good in all cancer books. But as you describe a daily diet would not provide me with the “quantity” of an element needed to cause an instantaneous positive result.
I think I will be looking upon Pomegranate, Curcumin and Vitamin D. What would you suggest to add?

 

My good news is that the PSA doubling time has slowed down to 2.5 months. The last tests (Jun3) come as PSA=0.71 ng/ml and Testosterone=3.84 ng/ml (384 ng/dL). I am asymptomatic, slimmer, boobs have disappeared, got my strength back, full size balls and full libido. I am very happy. 
In recalculating PSA progress, I can now expect to reach the threshold PSA of 2.5 in October 2013. This is the milestone in my intermittent marker to restart the hormonal treatment.

The fact surprised me and I feel it difficult to draw a conclusion for the slowdown process. But since the last two weeks (after reading Jogger’s post) I have restart taking a daily statins (Sinvastatine 20mg) which is known to influence cancer progression. In any case, the slowdown of the progressive process started with the PSA of Mar19 (0.37) to Apr29 (0.55) and then to Jun3 (0.71). This corresponds to PSADT of 1.1 to 1.6 to 2.5 months. Initial results were indicative of a PSA=2.5 for June.

 

This post may be bordering my comrades for being so long but I write to the ones in similar shoes that may benefit from my narrated experiences and fidings.

Recently, I have been “thinking” and trying to get to terms with this new phase of my progressive case. Friends however have encouraged me in looking positively to a possible cure. I think of it as a dream because I have been diagnosed with a systemic case. Cure would be possible if our scientists find a Silver Bullet (as posted by Mike-Samsung above) or if I manage to find that the diagnosis is incorrect. So far all image studies done along the 13 years as a survivor, have never detected cancer. I have been symptomless and the only marker indicating cancer activity has been the PSA. Salvage radiation and HT were decided with references to the doubling time of PSA, velocity and doctor’s thresholds and typical therapy administration. In other words, everything has been done on guessing without focusing on the cancer itself.

Probably I am not seeing the facts straighten but I am not sure if there is still a possibility of killing the bandit. The newer image studies (commented above by Mrs PJD) are better to detect micro cancer colonies however, that requires higher PSAs above the 2 ng/ml mark, being 10 the preferred level in cases of micrometastases. I could let the PSA rise freely to those levels for the “photo shoot”, but, even if I manage to get a picture of the bandit and its location, to “zip-out” the culprit I would have to radiate areas that have been already radiated in my past SRT. This is not impossible but very difficult and risky. We are talking about oligometastatic cancer spots localized at the lymph nodes, which in my case were dissected in RP (9 numbers out) or radiated thoroughly in a detailed isodoseplanning. Spots at far places would be easier but more difficult to assure cure.

Accordingly, instead of giving up with the dream of a cure (due to the difficulties in the process or still due to Rad over Rad), I have decided to investigate about the tests in Europe and found that C11 Choline, C11-Acetate and F18 are used at four locations. In Germany they do C11-Choline in a sophisticated Siemens PET/DW-MRI machine, since 2011. This uses the latest technology in scanning with 3 Tesla capabilities. In Holland they do C11 choline PET/CT and also Ferumoxtran MRI (similar to the Feraheme MRI done in USA) known as Ultra-Small Paramagnetic Iron Oxides (USPIO) Test. Other places are in Italy where they do the F18-FACBC PET scan, and in Swiss they do C11-Choline MRI. I also got places doing spot SK radiation (England, Sweden, Germany and Spain).

Information from a friend sets the capabilities of the tests; being the best the F18-FACBC PET scan because the system is able to detect tumors that are about half the size of what C11 Choline or Acetate PETs can detect. F18 is not nearly as good as C11. Choline or Acetate PETs often miss lymph node metastases that Feraheme/Ferumoxtran MRI can find. Experts and researchers say that the PSA should be in the range of 2 to 3 ng/ml for detection to be possible. A Dutch researcher named Dr. Fortuin compared C11 Choline PET to ferumoxtran MRI, and found that the MRI detected tumors as small as 4.9mm, whereas the PET minimum size was almost twice as big -- 8.4mm. The MRI detected cancerous nodes in 61% of patients, whereas the PET only detected 31%.
http://www.ncbi.nlm.nih.gov/pubmed/22417806

 

Here's the reference in regards to the benefits of F18-FACBC PET scan:
http://www.ncbi.nlm.nih.gov/pubmed/23591953

In resuming, I think that we are “presencing” the future way to diagnose prostate cancer. This is an incredible improvement from the ways back in 2000. One question remains for those patients with micrometastases (unfortunately this is my case). If the present contrast agents got still limitations in detection sizes (micro colonies), then false negative results will be most evident.
It is logical then to think that in a diagnosed case of micrometastases, a patient would not be free from future recurrences. The image study could accuse some small sized tumours but still negative in detecting already existing micro-tumours of millimetric sizes. Adding to this will be the problem in radiating the some area of previous spot radiation.
I wonder what Dr. Datoli would do when confronted with such a case. 

 

Confusing but a point to think about.

Best to all.

VGama 

 

Vasco,

This website has a detailed explanation why the author, a naturopath, considers each food useful.

 in dealing with prostate cancer.

http://www.prostate.net/2011/articles/lists/top-supplements-for-prostate-cancer/

To save your time  I  can show you  the list:

cayenne     genistein     green tea     lycopene     magnolia bark     mushrooms     omega-3 fatty acids     pectin     pomegranate   quercetin     resveratrol     turmeric     vitamin D     white tea     zinc

Good luck!

Jack from Jersey

tarhoosier said:

What is next

VdG:

 

I went through something like this last year. My psa was at a DT of 25 days and Myers sent me to Sand Lake for Feraheme 3-T MRI and f-18 bone scan. Myers preferred a psa of 2-5 and I was headed to 10 at the time. He approved casodex for up to two weeks prior to the scan, which I took to mantain some control of psa. The MRI showed excellent quality images and I have nothing to be concerned of in my interior organs. There was no sign of cancer in nodes, but two bone lesions by F-18.

I think your psa trigger of 2.5 is reasonable for normal situations, however if you seek this kind of advanced imaging then waiting until 5 or more could be advantageous. I think Dr. Barentsz can offer great opportunity. What psa does he prefer for men such as you?

I did start ADT full treatment two days after returning from Sand Lake Imaging. My radiation at Dattoli started two months later and they treated the lymph nodes even though they had not shown cancer. They just wanted to do all they could, along with the spine and hip lesions.  I agreed. Why wait and go through this again?

In reality I can do the whole imaging thing again and if higher nodes (above the diaphragm) are identified, the whole process could be repeated. I have no regrets. I have just started my off treament period after 12 months of ADT following the scans last year. I am hoping for a longer psaDT. During radiation/ADT last year my psa fell farther and faster than ever before, so until more evidence is accumulated I will take that as a good sign.

I know that casey has posted here about a similar experience in 2011.

tarhoosier,

thank you for the info, Can i ask what your prior treatment for PC was leading up to the rad?

thx

Traveler

tarhoosier said:

What is next

VdG:

 

I went through something like this last year. My psa was at a DT of 25 days and Myers sent me to Sand Lake for Feraheme 3-T MRI and f-18 bone scan. Myers preferred a psa of 2-5 and I was headed to 10 at the time. He approved casodex for up to two weeks prior to the scan, which I took to mantain some control of psa. The MRI showed excellent quality images and I have nothing to be concerned of in my interior organs. There was no sign of cancer in nodes, but two bone lesions by F-18.

I think your psa trigger of 2.5 is reasonable for normal situations, however if you seek this kind of advanced imaging then waiting until 5 or more could be advantageous. I think Dr. Barentsz can offer great opportunity. What psa does he prefer for men such as you?

I did start ADT full treatment two days after returning from Sand Lake Imaging. My radiation at Dattoli started two months later and they treated the lymph nodes even though they had not shown cancer. They just wanted to do all they could, along with the spine and hip lesions.  I agreed. Why wait and go through this again?

In reality I can do the whole imaging thing again and if higher nodes (above the diaphragm) are identified, the whole process could be repeated. I have no regrets. I have just started my off treament period after 12 months of ADT following the scans last year. I am hoping for a longer psaDT. During radiation/ADT last year my psa fell farther and faster than ever before, so until more evidence is accumulated I will take that as a good sign.

I know that casey has posted here about a similar experience in 2011.

Vasco,

Thank you for the intersting info. I should have been a little clearer in my earlier post. The CT/PET scan i had was C11Acetate/F-18 Fluorodeoxyglucose PET-CT Study.

This is what is planned again in early Aug. I noted in an earlier posting a discussion of C11 Choline V C11 Acetate , and thought the attached link was interesting

http://www.medscape.org/viewarticle/461317

it discuss's a study in Germany (very small sample so may not be statistically relevant) which said 

"The other report emanating from Germany compared C-11 acetate and C-11 choline PET scanning in 12 patients who underwent both studies.^[19] Urinary excretion was noted only in patients with C-11 choline. Based on this intraindividual comparative study, the uptake of both radiotracers was nearly identical in both the primary tumor and the metastases and no definite advantage could be perceived between the 2 tracers. This finding may be due to the fact that both acetate and choline reflect the malignancy-induced enhanced anabolic lipid metabolic pathways, albeit through different mechanisms. Basic science investigation in animal models suggests that choline may be more advantageous in imaging the early androgen-sensitive tumors, whereas acetate may have utility in imaging aggressive androgen-resistant tumors."

I will discuss this with Dr Tucker before my next scan.

Vasco, i hope to get back to Portugal in the next couple of yrs, i had some wonderful times there about 10 years ago when i had business investments there. I was lucky enough to play a number of courses in the Algarve (Qunto Do Lago, Pine cliffs, Penina) on the Estorlil coast nr Cascais (Qinto Da Marinha) and Obidos north of Lisbon (Praia D'El Rey) and a course near Porto in the north who's name escapes me.

I am also a fan of the red wines from the area near Porto. 

VdaG:

I know that odd feeling of disappointment when the USPIO showed no positive nodes, followed quickly by the rational reality that this is a GOOD sign. Oh, the emotional effects on thinking!

The Feraheme may be in Netherlands, as well as Florida, thus a closer and less expensive option. And the radiation may be performed anywhere top equipment and personnel reside. This includes Portugal and other sites in Europe. It will require some negotiating, perhaps. In my time at Dattoli there was a man from Sydney Australia who followed me into the treatment room each day and he was paying for his treatment himself, with a lower negotiated amount (which I do not know) surely well below the "list"  or stated public price. Any doctor here with expensive care options will be eager to offer a lower price, perhaps much lower than the public price, for cash payments.

I have no idea how effective a Carbon isotope (acetate/choline) would be in such situations as ours. This just came out today:

http://www.urotoday.com/Prostate-Cancer/11c-choline-pet-ct-scan-in-patients-with-prostate-cancer-treated-with-intermittent-adt-a-sequential-pet-ct-study-abstract.html

from Italy.

I am convinced that your education requires your doctors to provide the very best options available

tarhoosier said:

The money, honey

VdaG:

I know that odd feeling of disappointment when the USPIO showed no positive nodes, followed quickly by the rational reality that this is a GOOD sign. Oh, the emotional effects on thinking!

The Feraheme may be in Netherlands, as well as Florida, thus a closer and less expensive option. And the radiation may be performed anywhere top equipment and personnel reside. This includes Portugal and other sites in Europe. It will require some negotiating, perhaps. In my time at Dattoli there was a man from Sydney Australia who followed me into the treatment room each day and he was paying for his treatment himself, with a lower negotiated amount (which I do not know) surely well below the "list"  or stated public price. Any doctor here with expensive care options will be eager to offer a lower price, perhaps much lower than the public price, for cash payments.

I have no idea how effective a Carbon isotope (acetate/choline) would be in such situations as ours. This just came out today:

http://www.urotoday.com/Prostate-Cancer/11c-choline-pet-ct-scan-in-patients-with-prostate-cancer-treated-with-intermittent-adt-a-sequential-pet-ct-study-abstract.html

from Italy.

I am convinced that your education requires your doctors to provide the very best options available

Tarhoosier,

Thank you for your informative posts.  You seem pleased with the recent imaging & tx results you've had. I'm happy for you.  

If I understand correctly, no LN mets were identified on MRI with the contrast agent but the F18 sodium PET/CT found two bone hot spots. Is Myers recommending Xgeva? Continuing with a 5-ARI (i.e. ADT3/CAB)? I wonder if you might share the RT tx protocol (fractions, total Gy) you received to LNs and bone lesions.  Thx again and best wishes to you and yours.