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

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

 

Unfortunately my latest test results requires me to shorten my “vacations” on the hormonal treatment. The PSA came at 0.13 ng/ml and the Testosterone at 2.52 ng/ml (252 ng/dL). This is upsetting because I wished to stay off drugs for 5 years but the exponential calculations of the PSA velocity shows that I will reach the threshold limit of 2.5 ng/ml in October 2013. This is the value set by my doctor to stop the intermitent period and re-start HT. I was looking for a period of 3 years with no drugs. Frown

Today’s results have increased from;

Nov 2011: PSA=0.02, T=0.32 (last Eligard 6-month shot)
May 2012: PSA=0.02, T=<0.01 (End of Eligard’s effectiveness; Starting Off-Drugs perio
Aug 2012: PSA=0.02, T=0.11
Nov 2012: PSA=0.03, T=0.56
Jan 2013: PSA=0.13, T=2.52 (PSADT=1.96 months; PSAv=0.20 ng/ml per month)

I need some sort of alternatives to prolong this "lovely" time on normal levels of testosterone. Castration brought me numerous but mild side effects . In any case what I am now experiencing is quite different from the symptoms while on castration.
Libido and nostalgic erections are back. I got more energy, more pubic hair and harder beard. I feel an elevated lucidity and better reasoning in dealing with things. Rheumatic-like pain is gone totally.

I read that guys on intermittent hormonal therapy take maintenance drugs while on vacations from the treatment. The common practice by famous oncologists is to administer 5-ARI (such as Avodart or Proscar) continuously. A well known PCa survivor who took intermittent HT as his solo prime treatment in the past 13 years (since 1999), manages to prolong the vacation period with the use of thalidomide and vitamin B6. He just ended his third off-drug period which is quite impressive. Thalidomide "prohibits" the formation of newer blood vessels required by the cancer to survive.

The National Cancer Institute says this on the matter;
“Cancer researchers studying the conditions necessary for cancer metastasis have discovered that one of the critical events required is the growth of a new network of blood vessels. This process of forming new blood vessels is called angiogenesis.”
http://www.cancer.gov/cancertopics/understandingcancer/angiogenesis

Thalidomide cause side effects and it may be nasty. Five alpha reductase Inhibitors (5-ARI) are easier to take and they do not lower the testosterone  (saving other possible health problems) but they also lead to lower libido.

I wonder where I am heading. My next test is in two months.

You may follow my story at; http://csn.cancer.org/node/244938

 

Best to all.

VGama  Undecided

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Dear V

I am saddened that you have concerns this vacation MAY not last as long as you first expected. I hope that the you will be surprised by the next reading. I hope  the best for you.

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Your are my light in this world, I'm believer that you are going to be there!

 

VGama, it's to early in the game!

 

Your psa could go back down, mine when Too ??????

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Got my results again. Unfortunatly they confirm the PSA in top gear, now at PSA=0.37 and T=3.19 (319 ng/dl).

My next consultation is scheduled for April 2. I am eager to know my doctors opinion.

 

Regards.

VG  Cry

 

 

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Keep us informed, your doctor will knock it out of gear.

Good luck

God Bless

Ralph

caseyh
Posts: 63
Joined: May 2002

 

Sorry to hear that your vacation has been cut short.  I see you as a survivor who WILL get his PSA under control. 

Dr. Bob Leibowitz at Compassionate Oncology posted a paper in the web singing the praises of using Thalidomide/Revlimid to treat PCa.   I n 2007 I began taking Revlimid for rising PSA after a 42 month vacation from hormonal therapy. I discontinued its use 26 months later. Dosage was 15MG & 25MG for 28 day cycles. I completed 8 cycles. Some at 15MG & some at 25MG.   I would get a temporary PSA drop that would bounce back up again within 2 to 3 months.  It was difficult to assess whether the PSA drops were having an overall effect on my PSA velocity. The side effects of the drug were numerous and serious.    Most importantly, my white blood cell count dropped to dangerous levels, my platelet count dropped and remains low to this day, my creatinine level rose substantially, and I developed neuropathy in my foot. I had to stop driving because of mental confusion. In short, this is a very powerful drug that has some devastating side effects. About a year or so after I stopped using Revlimid, a clinical trial found that it was of no benefit to PCa patients. I recognize that Thalidomide & Revlimid are slightly different drugs, but they are in the same family of drugs and sometimes used interchangeably.   Based on my personal experience, I would recommend that these drugs only be used with weekly blood tests, and preferably not at all until clinical trials show a benefit for PCa patients.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Thanks Ralph for the positive comment. It is scaring to see it rising so fast. I hope my body reacts well with Eligard again. I think that the HT protocol for the next/continuing phase will be double or triple blockade, adding Casodex and Avodart to the Eligard. Unfortunately Xtandi (or Zytiga) is not available in Portugal yet, and even in other EU country, not everyone has access to them.

Caseyh; Thanks very much for the tip. This is the first time I feel not being on the “drivers’ seat” in 13 years. I believe you too got this kind of feeling at some point in your journey. Your experience is priceless.

I wonder if I should just let the “wave” take its course and do not try any “manipulation” to lengthen the period on vacations. Surely I will miss the libido and the “lovely” moments at closing times.
My doctor may well accept my wishes but I would be the one confronting the symptom and risks.

According to my findings, Thalidomide may provide a “wealthy” six-month period of low PSAs. Such would extend my vacations until the end of 2013 giving me approximately 19 months of off-drugs.
I know that my case is incomparable to the guys taking Thalidomide because they have been on triple blockade while I was on mono blockade with Eligard alone. But their vPSA off-drugs seem to be similar to what I am experiencing of 0.20 per month.

Avodart would give me no particular reason to try prolonging the time on vacations, apart of sparing me from the risks of bone loss and diabetes. Libido would be lost.
Sincerely, I am confused.

Can you list me any other medication or supplement or “method” known to help in prolonging the time on intermittent hormonal therapy?

Is there any Antiangiogenic Cocktail by Dr. Bob (Leibowitz) proper for guys on vacation from/in intermittent protocols?

 

Thanks in advance.

Best wishes in your journey.

VGama

caseyh
Posts: 63
Joined: May 2002

I am not a patient at Compassionate Oncology, and I am not familiar with any supplements or methods that they might use to  prolong vacation periods for intermittent hormonal therapy.  I do know that Dr. Myers used to prescribe Leukine.  I'm not sure if he still does.   After watching my numbers climb for about two years post Revlimid, I went to Sand Lake for a USPIO MRI and subsequent treatment at Datolli.  That has proven to be a very good decision on my part.  My PSA is down and holding steady for the past 16 months.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

 

Caseyh

Thanks for the info. I know that Myers uses/used Leukine in intermittent chemo administration (after Taxotere). He used the drug with or without Ketoconazole to trigger immune response. This is in fact his approach for the second-line HT, adding estrogen patches. The two drugs taken together may cause blood clogs so “vigilance” is required

Probably there are other “applications” for Leukine uses but I think that my systemic status is not yet that advanced (touch wood). Image studies (traditional) have been negative (probably due to colonies of micrometastases). I am hopeful for “enjoying” still a decade on first-line hormonal drugs, but want to continue the intermittent modality. I am worried of taking continuously LHRH (over 30 months) because of the risk of permanent hypogonadism.

The controversial Thalidomide is an anti nausea drug (infamous sleeping pill of 1950th) which has been approved in the treatment of cancer. It is not used by everyone (girls) because of its relation to cases of birth defects but it is not harmful to be taken by the “quotidian” cancer patient.

Dr. Myers once commented about the Resveratrol in red wine that can turn tumour stem cells into “dormancy”. Well, that is not happening in my body because I drink wine everyday and the bandit is now on the driver’s seat speeding. Maybe Thalidomide would make it to fall a sleep. Just joking.

Have you ever experienced values similar to the vPSA of mine?
Can you tell your PSA velocity when on off-drugs?

I appreciate your help and discussions.

Best.

VG

 

 

 

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGAMA

I'm sorry to read about your situation with shorter ADT hormone drugs, this defies everything I read on the MEDSCAPE article I Posted & will be asking my urologist to possibly stop my ELIGARD injections tomorrow. Now I question the validity of the article ---- VERY CONFUSING.

I WISH YOU THE BEST --you have always given excellent advice not only to me but everyone on this site.  I'll let you know what the doctor tells me tomorrow after I Show him the MEDSCAPE articlre. I also have to get my second PROLIA shot tomorrow along with the ELIGARD (4 month shot).

I look forward to your reply----BLESS you & everyone who has theses prostrate problems

CORDIALLY

Radiation Hopeful 

 

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

I think that your next test the psa will drop, because of the Eligard.

As for me my psa last month went up to 0.8 and this month back down to 0.6.

Between the lupron and Zytiga its working.

Good news from MD Anderson, the doctor made some comment about a new drug. That is a shot to fight prostate cancer, this maybe closer to a cure or giving more time.Cool  He would not say more than that.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGAMA and friends

Thanks for the replies-----Wanted to let you know what the PA. told me at my appointment today.

First > extended my PROLIA shot another 4 months

Second> after showing him the MEDSCAPE ARTICLE on shorter hormone injections(ELIGARD) he informed me the jury is still out on this being a viable study but if I Want to stop he will allow it, HE said he attended a urological siminar in PHiladelphia where intermittent therapy was discussed & again it's only a short vacation from the affects of the drug, if the PSA goes back up, the injection MUST be given again until it subsides.TO make a long story short, I get my next ELIGARD injection next month ( 4 month shot) today was for PROLIA only which I didn't have due to the dentist requesting it be delayed. He told me it won't hurt to extend it another 4 months. I also asked for a script to check my blood lipids & testosterone. We will review them at my next appointment in APRIL. I'm currently feeling VERY GOOD & don't want to jeopardize my progress. I don't like the fact he told me I will have to take hormone shots the rest of my life. I sure hope a cure comes out soon. I told him about the cancer breakthrough using a persons own white blood cells, modifying them them & placing them back into the body to fight the cancer cells. He told me PROVENGE & chemo works similar to this, that I Shouldn't rule it out. HE also told me the elimination or shorter ELIGARD is a THEORY ONLY --it works on some men but not all.

NOW I"M really confused----just passing along info I was told. I WISH everyone affected by this bandit a GOOD outcome & I for one will fight to the end. MY PSA is down to 0.27 thus the ELIGARD is working as my PSA was 0.30 last month.

BLESS EVERYONE affected by this disease & HAPPY EASTER. (I thank you in advance for any replies) "I'll update next month"

COrdially

Radiation Hopeful

  

os

 

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Dear Friend,

I have not been checking the discussion board regularly, and have only now learned of your disappointing report.  I add my words of encouragemt.

Sharing your knowledge about prostate cancer has been valueable to me and many others. Thank you.

Best wishes and continued happy days to you, VascodaGama.

Jerry

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Thanks Old-timer. I may need your instructions on your “secret way” used for the “lovely closing times”. It seems that shortly I will have to confront again the libido-less world.

Ralph, could you get more details on that “silver bullet” from MD Anderson. Zytiga has been so successful in your case that you may not need anything else. I wish you continuous control and hope you are doing well with the neuropathy.

Caseyh, thanks for the mail. It seems that your PSADT after the end of effectiveness of Zoladex was above 40 days which is much much better than my rate. In any case, without testosterone tests it is difficult to compare our cases because one does not know when you reached the normal levels out of castration. I wonder why you did not indicate/get the T test?

What can you recommend in regards to USPIO?
The theory that PCa stays in the localised lymph nodes is a point I would like to consider. So far it is “undetectable” in traditional scans which diagnose me as systemic. However, maybe a USPIO scan could find something if I allow the PSA to get higher than 10. In any case this is a value that my doctor thinks not proper as a threshold for my case, in this first phase of IADT.
Thanks in advance for the helpful information.

RadHope;

Your posts above worried me for your thinking. Please note that our cases are not comparable. You got your prostate in place and did IMRT with HT. You are now waiting for the final conclusion in regards to cure.

In my case, I come from two failed treatments (RP and SRT) and now am in the control phase (no cure expected) with HT. In my case there will be no “short term ADT”.
I have been put on intermittent modality of control with hormonal manipulations, thought to be right in my case. The intermittent modality has shown to be better than the continuous if done properly. Apart of controlling the progress of the cancer, it provides the patient with a relief period from the hypogonadism symptoms, allowing free flow of testosterone that is required in many dependent body functions.

The process for intermittent modality (IADT) requires that one takes HT drugs, continuously, until one manages to accomplish a constant period of one year in remission (PSA lower than 0.05 ng/ml). After that one stops the HT and will remain off drugs allowing the PSA to rise again until it reaches a threshold limit decided by the doctor (this limit different in each case).
In this first phase of IADT of my case it was set to be 2.5 ng/ml. From the PSA chronology (last results) I can calculate that this value will be reached sometime close to October 2013, which will be the start of the next phase on hormonal manipulations. The protocol of drugs for the next phase will then be decided according to my health status. My doctor will tell me what is reserved to me in the next consultation.

Your view in regards to the short or long term ADT, published at Medscape, is proper to your case. You can stop HT now to get unmasked PSAs so that you can check if the serum is stable (indicating success). If recurrence becomes apparent (constant increases of PSA without the effect of Eligard) then you can start HT shots again. Nothing is loosed.

 I wonder in what basis did your doctor opinion for you to have HT shots for the rest of your life. Does he consider your treatment as failed? Is there any positive test showing metastases? What is his principle to consider cure or failure?

Prolia is for your osteopenia problem, not cancer. It is given to guys on hormonal treatment because it is known that hypogonadism leads to deterioration of the bone.

I am glad to know about your low PSA result but you need to get such results from unmasked tests. You need to get the courage to stop HT for a period.

I want to thank you for inquiring with your doctor about the intermittent option. I know you did it for me and I am very grateful for your concern.

Happy Holiday season.

 

VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THANK YOU ----Once again I received words of wisdom from you. The PA doctor never said I had failure but did tell me I would have hormone shots for life. This was the PA not the oncologist doctor. I VALUE YOUR INPUT--- you should have been a doctor. NOW I ust muster up the courage to stop the hormone shots & see what happens. THANK YOU AGAIN FOR YOUR REPLY, IT's BETTER THAN THE DOCTOR. YOU ARE A INSPIRATION TO MANY ON THIS SITE. I Will keep you updated as time passes.

Radiation Hopeful                      Happy Holiday season

texhutch5
Posts: 4
Joined: Nov 2012

My nutritional oncologist recommended a supplement called Artemisinin to inhibit angiogenisis or the formation on new blood vessels. It is generally used for malaria, but is showing good results for cancer. No side effects with this stuff. Just quit taking it if you are going to have surgery. I am on my sixth month on HT vacation, and PSA is still undetectable.

Here is a link: http://en.wikipedia.org/wiki/Artemisinin

caseyh
Posts: 63
Joined: May 2002

T tests
Yes they were done, however, I do not have copies of those labs.  The lab reports are on file in the doctor's office, and not easily accessible to me.

Currently, USPIO scans for PCa are only available at Sand Lake Imaging, Orlando, and only by referral from Dr. Myers or the Datolli Cancer Center.  You can contact Datolli via there website, forward your records, and have a free no obligation telephone consultation.  Based on your consultation, if you wish, Datolli will make arrangements with Sand Lake for the scans.  Sand Lake will send you detailed reports of the results.  You can then decide if you wish to proceed with treatment.  If you elect to radiate lymph nodes/tumors found, It would very very advantageous to do it at Datolli because of their experience.   As you well know, I hold both Datolli & Sand Lake in very high esteem.  I believe that USPIO scans probably offer the best chance for locating your disease.  This is a big committment.  Fly to Orlando for the scans (3 to 4 days), and then spend an additional 10 weeks in Sarasota.  I believe it was well worth it for me.  I wish you success whatever you choose.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Texhutch5

Thank you for sharing your experience. I never heard of Artemisinin in the “weaponry” lot of ways to combat prostate cancer. Your suggestion is very welcome and I would appreciate if you share details of your experience with the drug and about your case.

Can you tell how you got it and how is it administered.
Is there any restriction due to interaction with other drugs or food?
What was your HT protocol before starting Artemisinin?
Do you know if there is any sequential (after HT but before chemo, etc) to take the drug?
Can you list the PSA chronology of your treatment?
Were have you been treated?

I found a paper (Pubmed) on the drug as a benefit to control angiogenesis and its ability against  cancer. In the article they say this;

“ …artemisinin and its derivatives have been shown to induce growth arrest and apoptosis (79), as well as inhibit angiogenesis by down-regulation of the vascular endothelial growth factor vascular epidermal growth factor and its cellular receptor KDR/flk-1…”

“…the highly stable artemisinin-derived trioxane dimmers was shown to inhibit the growth of and selectively kill several human cancer cell lines without inducing cytotoxic effects on normal neighboring cells…”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2629082/

 

Mark Moyad has no reference on the drug in his book (promoting Wellness BHT) which is probably the best collective data on drugs as options for prostate cancer treatments. Maybe we should invite him in adding Artemisinin to his list.

In another link there is a video introducing this drug used by the Chinese for the past 2000 years. The late discovery is about its benefits in the treatment of malaria.

http://www.youtube.com/watch?v=_Or8xLOGBu8
http://www.youtube.com/watch?v=Swr4SMAE0CM

 

I think that many in our boat will like to know about the drug. I thank you in advance for your info.

Best wishes for your improvements and continuing remission.

VGama

Samsungtech1
Posts: 350
Joined: Jan 2011

Vasco,

Sorry to hear this.  Beem going through a rough spot myself.  I really hope you get a rally going.  There were 2 scientists working with CBD1 or CBD2.  Anyhow they have killed cancer in all mice tested.  They just got approved for human tests.  I think Europe is ahead of. Us, except for this.  We are becoming experts atmarijuana.  Hell of a drug.  I use it every day.  Matter of fact have beeN using it since 1966.  

Good luck, my friend,  

Love,

Mike

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

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  Frown

mrspjd
Posts: 688
Joined: Apr 2010

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  

Samsungtech1
Posts: 350
Joined: Jan 2011

Vasco,

you loose confidence in someone then you need to replace him.  Otherwise you will be second guessing his every mood.  Interesting news, there is another team of scientists who are getting ready to start trials on another drug.  I believe you should check on these trials.  There are two really good ones coming up.  Being a numbers man you should know that as you go on the odds stack against you.  Something radical is probably called for.  Certain trials have better chances of working than others.  

PI wish you well.  Please check on trials.

 

Mike

jogger
Posts: 47
Joined: Nov 2009

Hi Vasco,

 

A short while back you wrote that  drinking wine for its resveratrol content did not seem to be doing any good.  You mentioned that Dr. Meyers recommended resveratrol, but I wonder if  he meant it should be taken as wine.  The Linus Pauling Institute has a chart showing various kinds of wine and their  resveratrol content per glass.  It ranges from 0.2 to 2.0 mg. per glass, whereas the typical resveratrol supplement contains 100 mg to 500 mg.  However, I'm not saying that taking the supplement  would guarantee better outcomes for you or any of us dealing with the problem of cancer.

Good luck to you!

 

 

Jack  from Jersey

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

 

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.  SealedSmileKiss
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.  Laughing

 

Confusing but a point to think about.

Best to all.

VGama  Wink

 

caseyh
Posts: 63
Joined: May 2002

 

I think that you should check with Dataolli to be certain that your lymph nodes cannot be radiated. The USPIO scan is from head to toe. I had previously had salvage radiation to the prostate bed, but the positive lymph nodes found by USPIO were above the area previously radiated. I completed treatment on 11/30/11 and to this day my PSA continues to fall. You may wish to do a telephone consultation with Datolli. The USPIO is effective at PSA levels under 2.0.

From JOURNEY published by the Dattoli Cancer Foundation, Spring 2013.

“The clinical relevance of USPIO was reported to have “the potential to identify neoplastic nodes down to a resolution of 3-4 mm, thereby markedly improving the detection of metastatic lymph node disease.” (We have actually seen the USPIO reveal nodes down to a resolution of 1.3mm.)”

“While the process (USPIO) is not currently FDA approved, it is on a fast track to gain approval”

 

 

 

Samsungtech1
Posts: 350
Joined: Jan 2011

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

 

starr15
Posts: 31
Joined: Oct 2011

Kansas Unversity Medical center does C11 acetate PET/CT, but I think the PSA has to be higher. They have. web site. 

jogger
Posts: 47
Joined: Nov 2009

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

STC
Posts: 21
Joined: Jun 2011

FYI

The drug, known for now as CFI-400945, is a new class of cancer agent that targets an enzyme involved in some malignancies, among them certain types of breast cancer, and ovarian, colorectal, pancreatic and prostate cancers.

http://www.cbc.ca/news/canada/toronto/story/2013/06/18/toronto-cancer-drug.html

all the best

 

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

STC

Thanks for posting about this new wonder drug CFI-400945. The media is all over the world reporting about the discovery. It seems that it took ten years in raising money, researching and manufacturing the CFI drug. Probably it will take another ten years to get approval for human “consumption”, but this is good and fair. It brings hope to the ones like us that never give up in the fighting and manage to hold tight during long years.  Laughing
That is for those who may benefit from future opportunities of better/newer ways to treat the disease.
These are drugs in the line of those being approached (studied) under the new “treatment path” of the genomics. We have done some discussions before too. Here are some links;
http://csn.cancer.org/node/227447
http://csn.cancer.org/node/201399#comment-1020958

According to the scientist, this CFI-400945 targets the PLK4 gene(an enzyme that regulates the duplication of cells which leads to the spread of cancerous cells). Without duplication the cell is doomed to die. It is not known yet if by preventing the “duplication” in the cell life cycle it will affect significantly the other ones not cancerous. Let’s cross our fingers for the success.

May I ask how are you and your friend doing? What are his latest results?

Continuing the Zeros, I guess.

http://csn.cancer.org/node/221375

 

Best Regards.

VGama  Wink

traveler
Posts: 21
Joined: Jun 2011

Vasco,

I am an avid reader of your case and while I joined the board over 2 yrs ago I have to date read information discussed but have not posted until now. At the time I joined I was contemplating "what to do next" having suffered a relapse after both RP (Gleason 7 (3+4)) in 02/2008 rising PSA reaching 1 by 01/2009 when I undertook SRT , PSA fell to <0.03 by 04/2009 but started to rise again in 08/2010 with a PSADT of 2 months.

 At that time I visited many hospitals (St Vincent’s  Sydney, Sloane Kettering NYC, Marsden London) all of whom recommended a mono-line hormone therapy, with a stated conclusion that I would become hormone refectory and had a median life expectancy of 4 years. That was not an exciting prospect and I wanted to look for other options. I had read Snuffy Myer along with others who have used CAB for aggressive forms of Prostate cancer but as I live in Singapore contact/ consultation was going to prove difficult. If you recall at that time via the board you drew my attention to Steve Tucker an Oncologist who had recently moved from LA to Singapore and who has been fantastic in terms of his approach to my case.

In June 2011 (aged 60) I started CAB my PSA was 1 at that time, I had undertaken PET/CT scans all of which were clear prior to the commencement of my treatment.

I had 3 monthly shots of Zoladex , and took Casodex and Proscar  daily, my PSA dropped to 0.04 within 30 days and <0.008 in 60 days and Testosterone to castrate levels in 90 days.

I followed this program for 1 year ,along the way I took daily supplements of vitamin D, Curcumin, Pomegranate, Omega 3,and resveratrol.

At the end of 1 year (06/2012) I dropped back to just Proscar , along with the supplements  and started taking Celebrex  daily and started Luekine injections, 14 days on 14 days off.

My testosterone took 9 months to recover and my PSA remained <0.008 until May 2013 (11 months off) when it rose to 0.022,  6 weeks later it risen again to 0.065 a doubling time of 22 days.

While this is a short doubling time  I have noticed that when my PSA rose after RP and again after SRT it increased quickly initially and then adopted an almost linier growth rate which resulted in a slower PSADT albeit still circa 2.5 months, we shall see what happens this time.

I am now waiting for  1 more reading (in consultation with Steve Tucker we agreed 2 readings at week 6  and week 12 post the initial rise in my PSA to get a trend line), my concerns are this PSADT signals is consistent an aggressive PC, I hope it slows after this initial flare as it has in the past.

My discussion with Dr Tucker following this rise led to an agreement that we watch how the PSA progress’s and other signs that may emerge via my bloods, I will have a PET/CT scan again in early August and if that is clear (which you would expect with a low PSA) then I will wait until my PSA is circa 2-3  and then restart the hormone blockade.

In the interim I need to work hard to shed the weight I have gained before I start on the hormone blockade again.

Like you I am clearly very disappointed that the "Bandit" has reappeared and will now have to contemplate what steps to take next. Clearly the doubling time is going to influence that. Like you I doubt if Rad on Rad  is an option even if a new type of scan could identify where the micro mets might be. I have read some real horror stories about parties who have had Rad on Rad  and I know that is a path I do not wish to follow.

There are many new drugs to consider and I am hopeful that the on / off program will be able to be repeated a few times and in the meantime some of the drugs in testing may offer more targeted treatments.

In addition to the normal bloods taken every 60 days I have had the paraffin slides of my prostate analysed and the  tumour DNA mapped (a process undertaken at Washington state) which provides updates on its interaction with new drugs being used / trialled along with existing drugs. This mapping is in its early days for PC but there has been a lot done in this regard for Breast cancer which is assisting in the treatment programs adopted. I also have CTC (circulating tumour cell) count taken each time my bloods are done (every 60 days) and right now there has been no rise , my count is currently 1 (on a scale of 0-5 with 5 being a cut-off point above which there is a clear indication the disease is progressing) and has been since I started CAB http://www.veridex.com/cellsearch/ForPatients.aspx

As I am not (or at least appear not to be)resistant to Casodex and Zolodex ,  my guess is we may stick with this when I go back to the "on phase". .

I have to say that during the "on ' phase I had limited side effects, a little hot flushes at the start, I have put on 7kg and I have just started to lose this extra weight which I need to shed before I go back on CAB again. I regret that my sexual function died after SRT and so that is now a memory, but my relationship with my wife if anything has become deeper as we have both sought to address the problems PC brings.

I try to exercise 3-5 days a week walking 8-15k and play golf twice a week often carrying my bag (though not when in Singapore as it is just too hot!) in addition I have started some gym work (resistance exercise’s) and intend to add swimming to my exercise regime (though as I travel a lot for work my programs often suffer as motivation seems to fall the further I am from my wife for some inexplicable reason!).

As with the progress of my PC from the very beginning, I have had no physical symptoms, I recovered from RP quickly, had no side effects during SRT and coped well with CAB, it is only evident via PSA readings, which, as you alluded to in your posting is somewhat frustrating in that we are dealing with something who's physical position in our bodies cannot be identified.

I am a positive person by nature and my view is there are way too many golf courses in the world I have yet to play and way to many vineyards producing great red wines I have yet to sample to let the "Bandit" cramp my style.

I look forward to reading the next chapter in your dealings with the "Bandit" and  I will promise to keep you posted on my next moves also.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Traveler

I am very pleased for your posting. Thanks for sharing your story which in some aspects is similar to mine. We also share similar thoughts.

I am glad to know about the success you managed in controlling the cancer. Our exchanged opinions occurred two years ago. Time passes so quickly. http://csn.cancer.org/node/220246

It seems that you trust Dr Tucker and in my opinion his approach has been balanced and good in you. I think you can rely on his professionalism. You are also in the “right track” by getting involved with genomics to follow the action of the medication vizaviz the cells’ reaction. Newer drugs on the drawing boards are being evolved from researches on the DNA. I call it “targeted” medication (maybe the better term would be “guided missile”) because it targets the cancerous cells directly. It looks into the intratumoral effect and actions.

Unfortunately I could not find yet a Portuguese “Tucker” or “Myers”. The oncologist most close to where I live (Albufeira), remarkable for his works on prostate cancer, is “friendly” with the vaccines treatment (like Provenge) which is out of reach to the many of us. The immunologic therapy costs over 85K in Europe and not all patients get approved under the national or European social health programmes.

Celebrex and Leukine are typically used by renowned oncologists in risky cases. I see myself as risky but my doctor does not advise similar protocols. Maybe in Europe doctors are too conservative or restricted by the conservatism of their associations. It seems that oncologists in EU do not share the same “common sense” among them, and move in the “second ranks” along other specialists.

In my times in Asia I knew of PET/CT in Singapore and Australia, however I am not aware of the newer machines in those places, but I image that that they have significantly improved (since 2000). You could try having a PET/CT with the C11 contrast agent or the F18-FACBC PET scan before starting CAB.
Last week I received an answer (mail) from Dr.
Jelle Barentsz (Radboud Prostate MR-Center, Netherlands) indicating that I could do the USPIO scan (
ferumoxtran contrast agent) in the beginning of 2014. This is not so far away but it may be late if I follow the threshold milestone of my intermittent approach, the PSA=2.5 ng/ml. I am still undecided on what to do.
Ironically, my present doctor (uro-oncologist) has not suggested the test and I cannot understand his reason for not accepting more advanced and proved diagnostic ways.
This October I will have to visit Japan and I am thinking in taking the opportunity to meet my surgeon of 2000 (urologist) to get his opinion or find out about the newer image studies there. Maybe I will have to start doing the things I believe on my own.

Dr. Jelle Barentsz is introduced in the site of Dr. Barken (http://vimeo.com/41757202).
His presentation regards the diagnosis of PCa using 3T-MRI and one can see in his video how ignorant urologists are in regards to the potential of the newer machines. He is teaching the medical community on how to effectively make use of the MRI. He does not sale equipments but the technique.

 

I am hopeful to meet you one day in one of those golf courses “you have yet to play”. Have you given a though of Portugal? Here you find both; good wineries and good courses.

Best wishes for continuing success.

Regards,

VGama  Wink

tarhoosier
Posts: 181
Joined: Aug 2006

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.

traveler
Posts: 21
Joined: Jun 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
Posts: 181
Joined: Aug 2006

dx 5/06, psa 15, 11/12+, G9. Declined radiation, surgery at Duke U, 6/06, residual psa 2.7 @ 30 days and again @60 days. ADT2 intermittent, 18 months on, 8-9 off over 6 years before tx outlined above.

traveler
Posts: 21
Joined: Jun 2011

Tarhoosier,

Many thanks for the info, i wish you all the very best in beating the bandit.

I clearly have more reading to do especially on how and when the variety of tracers can be utilised to locate the mets/ micro mets. As my post op histology was good, negative margins, LN clear, it was assumed initially that a residue was left in the prostate bed and that view was further reinforced when the SRT saw my PSA drop to <0.03 ,hence the advice i had about rad on rad not being an option.

I guess as you mentioned in your comment to Vasco , there is little choice but to allow the PSA rise to a level circa 2-3 before most current scan tecnology can identify where in the body it is knowing it may still not register. I guess the other conundrum i am trying to deal with is, is it better to let my PSA rise further in order for mets to be identified than accepting a clear scan at 2.5 and starting ADT again.  

Thanks again for you info and i look forward to reading more about your progress on this interesting journey we are all on.

Best regards

traveler
Posts: 21
Joined: Jun 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. Smile

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Tarhoosier; Thanks for the support and tips. You and Caseyh are priceless to this forum.

There is no doubt about the potential of these “newer” tracers in image studies (USPIO, C11 choline/acetate, F18 fluoro/CBC) for identifying and locating cancer. In fact I believe that we are now seeing a newer phase of treatment in the traditional sequential in treating PCa. We may introduce Oligo-spot RT in between HT and Chemo. We may see the traditional to become like this; from the radicals to hormonal to Oligo-RT to chemo to immunological to Xofigo to holistic to …….
It seems that the oligometastatic theory is providing another way of looking into each case and giving a chance in all recurrence cases, even to the ones diagnosed as systemic.  Laughing

I find your case interesting because the tests were negative (did not show metastases) but the spot radiation of the lymph nodes and lesions at spine were successful in hitting the bull’s eyes. This is an example of the limitations of USPIO in the presence of a PSA as high as close to 10.
I would think that sort of micrometastases are behind the false negative. Nevertheless, the image study identified the bone lesions and positioned the peripheral lymph nodes, providing targets for the radiation.
The field may have included unaffected areas (clean of cancer) but in overall the treatment was successful in knocking down the cancer again. This is extraordinary. I hope you get the best outcomes when the ADT wears off. 

I am not sure but I think that in the case of Caseyh the tests were positive and they successful radiated the affected spots providing his continuous decreasing PSA serum experience, after a bounce and without any intervention (HT drugs) of hormonal effects. His PSA was lower at the time of the MRI being close to 1.5 ng/ml.
Patients in other forums have reported about their experience with the same “protocol” (Myers+Sand Lake Imaging+Dattoli Radiation) which have significantly lower their PSA. These are encouraging news for me to consider a try; however I have to look into the cost of such protocol plus travel expences because it would not be covered by the EU social health care. I would have to pay the whole bill out of my pocket.  Money Mouth

Traveler; You have been to my “grounds” (Quinta do Lago) and maybe you would beat me in the play, but you are still welcome. The golf course I most remember from my travels and become nostalgic to play again is the second oldest golf course in Asia, at Myanmar (Burma), the Thayet Golf Club set close to the banks of the Ayeyarwaddy River. Do you know it?
I am curious about your business in Portugal that made you to go after the golf courses. 

Regarding the PET/CT scan you will perform, I think that you could consider changing the tracers. You could try to get this time a different “picture” to contrast against what was found in the previous test F18/C11 Acetate. Make your own question list before the consultation with Dr Tucker. You may send him in advance a copy of this link about findings in regards to the several contrast agents;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3012154/

As discussed above I believe that we still got a chance at cure if we ever manage to pin point the bandit. It is a very narrow possibility but ADT alone cannot reach those levels.

Best wishes for continuous success.

VG  Wink

tarhoosier
Posts: 181
Joined: Aug 2006

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

mrspjd
Posts: 688
Joined: Apr 2010

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. 

tarhoosier
Posts: 181
Joined: Aug 2006

Correct, the Feraheme 3T MRI showed nothing in soft tissues. F-18 which is dramatically better than Tc bone scan showed the left ileum and a spinal spot. The treatment was 40 fractions, total 72 gy, and I do not know if there was differential dose to the locations. Side effects were predictable and minimal.

In my case Myers is reluctant to advise bisphosphonates due to the side effects and I agree. I have a neighbor who has been on long term Fosamax and now has had dramatic splintering fractures with catastrophic consequences for her. Also ONJ issues are a concern, thus no bone treatment. Bone density test is scheduled in November. I also take daily D3 and strontium orally. This is my newest experiment.

I did ADT 2 and then ADT 1 when T went to <3 ng, psa was <0.01 and DHT was also at bottom of scale, thus no need for other interventions.

tarhoosier
Posts: 181
Joined: Aug 2006

This thread needs a new heading of its own as we go on about treatments. Vasco has lost his own thread, I am sorry to say that I have participated

mrspjd
Posts: 688
Joined: Apr 2010
Tarhoosier,
What did you participate in--a discussion about recurrent PCa?  And you're sorry for that? Please don't be.  With all due respect, I don't believe any poster (myself or you included) is intentionally trying to distract or detract from Vasca's subject thread (although that's ultimately his call).  I see most CSN members as caring individuals who are trying to be helpful.  Discussions, shared info, and questions often arise in threads like this one and morph/evolve into add'l pertinent/relevant PCa info.  This can be an opportunity to learn or a springboard to more research. IMHO, that process contributes to a richer, broader understanding of the Original Poster's subject matter, even if some questions may be directed to other members. Everyone's contributions/posts are valuable in one way or another and I, for one, hope to see more of yours, here and on new threads.  OK, NOW this is a distraction. Have an enjoyable July 4th holiday with family and friends!
VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

I started this thread but I do not own it. I welcome any one that wants to share or opinion or question about any discussion thrown in it. I always try to encourage people to chatting even if their English is worse than mine.

We are all in the same boat and we all want to help and we all need it.

Thanks for the concern.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

 

I was surprised with my latest PSA result. It come at PSA= 0.73 ng/ml (T=344 ng/ml)

This is the second time I am surprised by a lower than expected result. The previous test done two months ago was PSA= 0.71 and it corresponded to a slowing curve after the aggressive rising of previous results. You can see from my above posts how unpredictable the results have become. The rising curve is now flattened and I hope that the next required “action” is far from being on the “scene”.   Tongue Out
Could my initial wish of a 5 year ADT vacation be still possible?

On a tip from Mrs PJD I found and contacted a radiologist-oncologist in Coimbra Hospital University. He became interested in follow my case. We have discussed on my progressive diagnosis and he agreed with the idea of a C11 PET/MRI testing or the F18-FACBC PET which both are done at their facilities. I did not know that these tests were available in several hospitals in Portugal (Lisbon Coimbra and Porto in the north). They do not do the USPIO test.

I am happy for the result but intrigued and in defiance of its veracity (typical of a freak patient). The laboratory assured me that there were no errors. I will wait until the next test when all the lipids are to be checked too.  Embarassed

 

Best to all.

VG  Wink

 

ncobjim
Posts: 35
Joined: Nov 2010

VG

 

It's nice to read good news once and awhile. Hope you have continued success. My PSA is also rising at a slower rate. Currently at 0.26. No new treatments at this time. We just have to keep going and hope for the best.

Jim

 

 

 

 

 

 

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Enjoy the great results...............forget the defiance.....a toast of California Red for you

STC
Posts: 21
Joined: Jun 2011

FYI good news ...
http://pubs.acs.org/doi/abs/10.1021/ja403609x?prevSearch=prostate%2Bcancer&searchHistoryKey=

 

 

 

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

Vasco, I do not think you are going to get much satisfaction trying to get your reserveratrol from red wine.  You need a supplement, but be careful.  There are many, many resveratrol scams out there, and the prices can vary greatly.  However, reseveratrol has proven to decrease aging by as much as 30% and has been recommended as a supplement of benefit to Pca.  

Good luck on your present situation.  It sounds like things are getting much better for you, and you have so many admirers for all of your help and huge knowledge. By the way, more than 50 years ago, I spent two months in Portugal, which I enjoyed very much.  I thought the men were super handsome, but I was not impressed by the looks of the women.  I stayed mostly in the government run pousadas (?)  At that time, I think I was paying less than $10 a day for room and board.  It was an enjoyable time, and the people were very friendly and helpful. love, Rakendra  

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Just to imform "ya" about my latest PSA of 0.88 ng/ml (Sep 17). This confirms previous slower increases, now with an average PSADT of 10 months.

Thanks to all for the many opinions and concerns.

Rakendra, you are welcome to my place at this little conner of the Europe, I promiss to find you a bed for still the 10$ a night, thought the bed may be a little harder.

VG  Wink

traveler
Posts: 21
Joined: Jun 2011

Vasco,

greta news, i toasted your results last night with a very good red!!

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