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TIP Testosterone inactivating pharmaceuticals Treatment Option

SantaZia
Posts: 64
Joined: Apr 2018

One of my consults will be with the Dr. Turner of the Mark Scholz group in L.A. (The Key to Prostate Cancer, 2018 and The Prostate Snatchers). I am also meeting with Radiation Oncologists at MD Anderson for Proton and UNM Cancer for Photon therapies. I was recommended not to have surgery and RT may also have some extra negative effects for me with my bladder neck scarring due to TURP and intermittent catheterization.  The increased risk is around 25% of incontinence verse 5% for those without the problem. Surgery is much higher but not recommended.  So, if I go on hormonal blockage alone I will have to increase my exercise and watch my diet, take ED drugs and other stuff but not deal with chance of complete incontinence.  Another recent leaning experience was that because I have been on finasteride since my TURP my PSA of 14.9 should be doubled. Although I have a 3+4 =7 Gleason and a small right-side tumor confined to the prostate capsule and genetic tests confirming my intermediate range there is no guarantee.  So, I am seriously considering TIP. Your thoughts please.  Thank you! 

Old Salt
Posts: 720
Joined: Aug 2014

Are you referring to Androgen Deprivation Therapy (ADT) or is TIP something else?

artie
Posts: 30
Joined: Jun 2018

What is AS?

SantaZia
Posts: 64
Joined: Apr 2018

 Androgen Deprivation Therapy (ADT) is what they are calling TIP with some modifications 

 

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

I do not know details of your case or age but I am curious about your interest in hormonal treatments. There is a survivor also G7 as you that cared his case with ADT as prime. You can read the story of this "famous" survivor named Jim (IADT3since2000) at HealthBoards forum, in here;

https://www.healthboards.com/boards/cancer-prostate/1039151-screen-not-screen-18-years-ago-tonight.html

When ADT start showing failure after three consecutive intermittent hormonal periods (over ten years later) he then follow radiotherapy at the advice of Dr. Myers, keeping the gland in place. You may like to read his many past posts where he narrates his experiences regarding the treatment protocol, the side effects and how he did overcome them. Please note that ADT was the only treatment he used to control any advance of the bandit during the time that the present newer drugs (TIPs) were still in the drawing boards under clinical trials. The arsenal weaponry of present drugs is wider but the protocol in administration/sequential is the same. 

Best wishes,

VGama

SantaZia
Posts: 64
Joined: Apr 2018

Thank you VGama for the link. I am 68 a runner in good health longevity in the family. I was planning a little longer AS than 3 months but need to start treatment soon based on my PSA numbers. Best wishes. SantaZia

artie
Posts: 30
Joined: Jun 2018

What is AS?

 

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Santa,

The search engine of CSN's forum is not friendlier so that I cannot find the details of your case, but I think that you are a low risk patient for being recommended to AS. This is the best way to handle PCa cases if the conditions permit that. I wonder why you are giving up with AS.

In any case, if your cancer is hormonal dependent, ADT may be enough to control any advance of the cancer till your 80/90th yo. Intermittent administration can take you to that route but you need to be vigilant, have periodical health follow ups and follow a well establishes protocol, including monitoring tests and exams. Patients on ADT are subjected to several risks for the lack of circulating testosterone. Many of our systems depend on androgens so that a careful plan on substitutes should take place. Food wise, supplements wise, physical fitness, etc. become important. Another aspect to consider are the silent illnesses that will come while we age. These must be taken into consideration from the beginning. The cardiovascular system and any other dependent on its proper function will need to be accessed coordinately. The Liver, kidneys and muscular structure will be affected.

I believe your doctor Turner knows details on the matters I am referring to. He does well in incorporating nutrition in PCa treatments (his trade) but not all he says is to be accepted. You need to "command" and follow only what you trust or think it better. He will accept your wishes. Living with quality is the reason for choosing AS or a palliative therapy. It should be your motto.

Best wishes,

VG

SantaZia
Posts: 64
Joined: Apr 2018

Good information VG.  I was intermediate 3=4=7 with -15% in two cores one was 3=3=6 I had a PSA of 14.9 on my last test. PC is only in prostate bone scan and T3 MRI.  Neurogenic bladder and recurrent bladder neck contracture with urinary retention. I go to MD Anderson for a Proton consult next week.  After looking at the hormonal only option I agree with you it would not be the best for me. I will cancel that consult. My surgeon who was recommended AS and had my medication was not sure I was taking Finasteride and was not 2x my PSA to 28-30.  I sure wasn't told that during the time I was taking Finasteride for 14 years. Another problem was my PSA was suppose to be tested each year if I took the drug. It wasn't from 2012 to 2018.   I am just going to have to bite the bullet and hope that Proton or Photon radiation works with damaging my bladder neck.  

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

I am surprised for your above comment in regards to the error from your doctor that recommended you to AS. Even a PSA of 14.9 ng/ml would be alarming in a guy with a G7 score. In any case, I think you doing well to get the opinions from MD Anderson physicians. The issue at the  bladder neck and any existing scar tissues could prohibit RT intervention. It is a fact that radiologists do not like to administer radiation to scar tissues because killing the DNA of weaken cells can cause fistulas. I think it better for you to check the area properly and then get the opinion of the radiologists before signing the RT agreement that relives them from any wrong outcome. You may want to avoid surgery for the side effects but radiation (protons or photons) is not a walk in park. It is serious and got consequences too.

I recommend you to get several opinions from various specialists including medical oncologists treating with TIPs.

Beswt

VG

SantaZia
Posts: 64
Joined: Apr 2018

Yes the cancer is contained in the prostate.  You are correct. Best research I found "Urethral stricture after RT is a late complication usually observed 1–3 years after radiation. Several risk factors for the development of a urethral stricture have been identified. Previous transurethral resection of the prostate (TURP) increases the stricture rates up to 15% compared to 6% without prior resection"  I would love some additional recommendation on Medical Oncologists or other specialists.  I thought the Mark Schultz group and Dr. Turner might be good however from my recent reading they would be recommending a combination of treatment for me which would include RT.  Thank you! 

Grinder
Posts: 441
Joined: Mar 2017

Still wondering why the alarm isnt being sounded about TURP and future treatment limitations.

TURP and AS was one of the options presented to me with my Gleason 6 3+3 score. I went with RP. The rest is history.

DEll1958
Posts: 1
Joined: Jun 2018

My tumor was on the left side only. Gleason 4+3. I had what was called High Intensity Focused Ultrasound. They burn the tumor with UV rays. 5 months later just some bladder isues, but PSA went from 4.3 before to 0.04 last month. But my Insurance wouldn't pay for it.  Doctors in Jacksonville Florida advertise it in the Sunday Paper

Old Salt
Posts: 720
Joined: Aug 2014

But it would be so nice if you would start a new thread because your topic is unrelated to this thread. 

Just use the Add new Forum topic 'button' (on the left side of the main screen)

artie
Posts: 30
Joined: Jun 2018

have been treated with RT and degaralix ,cancer is gone but left with very low testoterone.Sme drs suggest getting testoterone supplementation but ther are against.Not sure what to do?

Old Salt
Posts: 720
Joined: Aug 2014

Posting the same question twice is not considered good form on Forums such as this.

SantaZia
Posts: 64
Joined: Apr 2018

Just to bring this back to the original threat Mark Scholz in his 2018 book the Key to Prostate Cancer has a chapter devoted to this.  His view is that intermediate PC with a good response to hormones should be considered for treatment with hormones alone. He has followed a number of patients who were successful for 15 to 20 years with this.  I decided to go with radiation after my 6 months of Lupron because he discusses there can be issues with hormones as a standalone treatment. Of course, the recent clinical study of 10K breast cancer patients being treated with hormones resulting in good results as with chemo does indicate that perhaps some clinical studies comparing hormones without radiation to other treatments might be worth the time and effort. 

artie
Posts: 30
Joined: Jun 2018

What is AS

Grinder
Posts: 441
Joined: Mar 2017

artie... it stands for Active Surveillance... there are guys in this forum whose Gleason scores are low enough to qualify for active surveillance as the prostate cancer does not pose an immediate threat. My dad was diagnosed with PC, but it never was seriously progressed enough to merit treatment, because Prostate Cancer is not a threat as long as it stays contained and dormant inside the Prostate. My dad passed away at 90 of unrelated causes.

Usually, a PSA baseline is established, and as long as PSA scores remain steady without dramatic rises, that is an indication that there is no increase in cell activity.

Other guys can address this better than I can though, who are currently on AS. I opted out of AS because of other problems.

SantaZia
Posts: 64
Joined: Apr 2018

I explored AS even though I was not the best candidate for it after finding out I had PC in Feb. 18. I am 68 years, a runner in good health, 12.7 PSA May 18, 3+4 confirmed by John Hopkins, 4+3 MD Anderson Proton Center, Finasteride 5mg 15 years. TURP 2003, neurogenic bladder and intermittent cath. use.  T3 MRI discovered a1.8 Lesion, contained, a clean bone scan. Today I go in for a colonoscopy. It was due in 1.5 years, but it is better to have one before radiation treatment than after.

My 3-month exploration of AS was based on Ralph Blum's story in his book with Mark Schultz, The Invasion of the Prostate Snatchers.  It is a great read.  Ralph started taking hormones over the 20 years that he had avoided treatment. He really wasn’t doing AS that long.  AS is a treatment option that is best for men with at 3+3, a stable PSA, no genetic mutations or family history of PC or other risk factors. After I was convinced that I was more of an unfavorable intermediate PC and with family longevity AS would not be a good idea, I considered TIP which is a treatment option more for advanced prostate cancer where hormones are used with periods of time where they may be stopped or changed.  Below is a post by Harvard Prostate Knowledge on AS or ADT use by men like me. * I ended up with 6 months on Lupron. I am in month 2 and I will start Rapid-Arc Radiotherapy Technology form of IMRT in September with a phase 3 trial of ProstAtak® an immunotherapy in combination with radiation therapy for patients with intermediate-high risk localized prostate cancer. I had considered Proton treatment at MD Anderson, but I wanted to participate in the trial and hopefully reduce the chance of reoccurrence.

 

*Using data from the Surveillance, Epidemiology, and End Results program and Medicare files, researchers identified 19,271 men diagnosed with localized prostate cancer during a 10-year period who did not undergo surgery or radiation. Of that group, 41% were treated with ADT, also called hormone therapy. The rest pursued active surveillance, a “wait-and-see” approach to treatment. The median age of participants was 77, and they were followed for nearly seven years, on average. The researchers found no overall survival benefit for men who used ADT as their primary therapy for the treatment of prostate cancer. They also concluded that men who took hormones were actually more likely to die from prostate cancer than their untreated peers.The findings don’t apply to everyone. All of the men in the study were at least 66 years old; results could vary for younger men. Also, other studies have supported the use of ADT in men with high-risk or advanced prostate cancer, which has spread beyond the prostate. Men suffering a recurrence of prostate cancer may also benefit from taking hormones. https://www.harvardprostateknowledge.org/questioning-hormone-therapy-as-a-primary-cancer-treatment-for-older-men

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

I am glad for knowing your final decision and treatment. I believe and hope all goes into your favor. Please let us know your experiences as treatment advances. The title of this thread would not serve well to those oncologists that support ADT over any other PCa treatment. In my lay opinion I think that ADT does not substitute a radical so that I wonder why giving up with AS in preference of a palliative approach. After all, ADT also got its side effects that can turn things nasty similarly to those from radicals. They are just different so that the choice is wider and we can avoid what we most dislike.

Here is a link with the details on ADT's side effects as they occur by experience;

https://www.medscape.com/viewarticle/589251_1  

The Invasion of the Prostate Snatchers is a good book for the references of Dr. Mark Schultz and for the steps followed by Ralph in procuring a salvage treatment but the story would be quite different if it has been written today. The image studies have improved significantly (opposed to the ones done by Ralph) and the data on ADT drugs and therapies have now newer players in the game, leading to modified cocktails.

In my opinion, the contents in the book discourage surgeries giving preferences to ADT or RT. I think it being biased which creates suspicious on the authors' interest in publishing such a book. I enjoyed reading (7 years ago) their view in regards to active surveillance for initial monitoring rather than choosing a radical but they only recommend AS in reference to surgery creating ambiguity among experienced readers that have some knowledge on PCa matters.
Mark Schultz is one of the greatest ADT's oncologists administering the therapy as prime. He pairs Dr. Myers (my hero) in terms of monitoring patients in ADT but it seems that he does not explore the means to detect or locate the cancer as Myers does. Surely, without due targets a radical has higher probabilities for failure so that rather than waiting for that to happen one could as well involve ADT from the beginning.
Probably our vast exchanged opinions recently posted in this forum complete better the references described in the book.

Best wishes for a successful outcome in the combo.

VGama

SantaZia
Posts: 64
Joined: Apr 2018

VGama thank you.  I have found that your comments and others have been extremely helpful. This is a great forum for discussion.  I appreciate the input.  My second month on Lupron not too bad. I will keep updating along the journey. 

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