Hello, new to list but not to PCA

[DenDoc]

I am a 74 year old retired Pediatrician who knew nothing about prostate cancer prior to my diagnosis 17 years ago. Have soft tissue mets(lungs) and with a rising PSA after 7 years on ADT, I am about to start a new chapter. It has been and continues to be an interesting journey. These forums have been a great help.

Will post my data for those interested:

Bob Lederer: Diagnosed November 1996, age 56, bPSA 11.6, Gleason 6(3+3), T2a, Gland size 75gm, EBRT 2500Rads, Lupron x1, 98 I-125 seeds implanted in Seattle (Seattle Prostate Institute) by John Sylvester in April 98. Partin table prediction: 55% chance outside capsule.

Impotence after 2 years but responded well to Viagra. PSAs fell and had expected bump at 18 mos. All below 0.1 until 7 years out. June 2008, (11 years out) rising in a linear progression but accelerated doubling time from 12 months to 7 months. Currently 2.91.

August 1, 2008-Focal Cryoablation at the University of Colorado Urologic Cancer Center. Preop PSA was 4.2. Prostate size 18 gms on color Doppler.

PSAs rose post op so Bone Scan and CT ordered. Scan neg but CT showed Left Lower Lobe lesion in lung. CT/PET scan showed activity in lungs and thyroid. Hemithyroidectomy March 2009, benign tumor. April 15 scheduled lung biopsy. Found extensive small mets on pleura of left lung. Biopsy revealed PCA in mets with cells appearing very similar to original cellular description from 12 years earlier. PSA was 11.8 at time of biopsy.

ADT begun with Lupron on April 26. 2009.

Early 2014 PSA’s 0.3 until August=0.35. Sept0.45

Definite trend up.

Repeat PET scan, April 2014. No activity noted

Follow up Bone density in April, 2011 also normal

T =10. Baseline bone density normal and Vit D normal..

No depression.

Current therapy is Lupron every 4 mos. Zometa every 6 months (IV infusion)

Taking multivitamins and a Vitamin D supplement daily.

Hot flashes present but tolerable till 2014.

Added Estradiol patch 0.225 mg weekly, April 2013 to control hot flashes. (Avoid sleep disturbance)

PSA rises are very slow. Currently 1.1 and doubling time is about 12 months so no change in therapy yet, though will discuss a new drug next month.

The photo is me celebrating Movember with my two youngest grandchildren. Their mustaches beat mine!

[Darryl Partner]

Very cool photo! Great that your Estradiol patches are helping you to get a good nights sleep. How do you think that your work as a pediatrician influenced(s) your treatment choice making?

[DenDoc in reply to Darryl]

Thanks Daryrl. Not very much. I am completely self educated on PCA. 17 years there were few sites on the Internet. I started out on one called Seedpods. Do you have any PCA docs monitoring or moderating this site?

That generally helps keep discussions on subject. I am still a scientist at heart and like facts.

[Darryl Partner in reply to DenDoc]

I "remember" seedpods. We just in day two of on boarding folks, with much of that heavy lifting to occur in the next month. Our current moderators are exceedingly experienced. I am one of them, an oncology social worker (and published "social scientist"), focused on prostate cancer since 1997. MD's will likely join up in a month or two, after we get our population as numerous as on our other platforms. Do feel encouraged to channel your inner scientist as you comment and post, here.

[maack1]

Geez! I just typed quite a bit of info and it "got lost," so starting over.

You mention being on the LHRH agonist Lupron which is likely the LHRH of your physician's choice, but you don't mention having been prescribed an antiandrogen, with bicalutamide, generic of Casodex, most often prescribed at one 50mg tablet daily. Lupron has no effect on testosterone also produced by your adrenal glands, so without an antiandrogen that testosterone has open access into the cancer cell nucleus via the multitude of androgen receptors on every cancer cell, thus can stimulate cell growth and proliferation.

You also mention receiving Zometa/zoledronic acid infusions. How often are those infusions? Reason I ask is because recent information states that an infusion every 12 weeks is just as effective as being infused every three weeks.

You also mention that your Vitamin D level is normal. The question is "what is your normal?" Prostate Cancer patient's normal range should be within 75ng/ml and 94ng/ml. Actually desiring between 60ng/ml and 75ng/ml, but since most all equipment used to measure 25-hydroxy Vitamin D is somewhat inaccurate by about 20%, best to shoot for at least 75ng/ml. That may require a daily intake of 7000 IU as a supplement, particularly if you don't get much sun.

Another test you should have done with a next blood draw is to check your Prolactin level. Too many physicians are unaware of how important it is to know this level. If at a level of 5 or higher, cabergoline should be prescribed to get the level down well below 5. Please review this paper explaining: tinyurl.com/7w5omeo

I would see the necessity of adding the antiandrogen bicalutamide ASAP to see if that reins in continued PSA elevation. If you have already had bicalutamide as part of your protocol and it eventually failed to block PSA rise, then I would expect your next consideration would be a choice of either Zytiga/abiraterone acetate or Xtandi/enzalutamide. Zytiga is very effective in shutting down testosterone production from the three sources, testicular, adrenal glands, and that testosterone cancer cells can produce within themselves. Xtandi is much more effective than usual antiandrogens on blocking the multitude of androgen receptors on cancer cells from testosterone access. Zytiga can be considered a super alternative to ketoconazole and Xtandi can be considered a super alternative to usual antiandrogens. If your Lupron is being effective in maintaining your testosterone level clinically castrate at 20ng/dl or below, and if you have already failed with an antiandrogen like bicalutamide, then Xtandi may be the next best choice of medication to rein in your continuing PSA rise,

If interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following theprostateadvocate.com where you can also click on the menu word "Observations" and access over 200 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more.

[DenDoc in reply to maack1]

Chuck, Sorry to be slow getting back to you. I was on vacation for 2 weeks and tried to limit my time on PCA issues while gone.

You will not remember this but when I got frustrated with my local care, I was considering going to MSK or to MDAnderson for a second opinion. You wrote and asked why I would leave Denver when we had local expertise at CU Medical Center. I self referred and saw Mike Glode who has just retired but still responds to emails and blog posts.

Mike has just looked at all my data and determined that my doubling time is now established at 12 months. He has suggested Bicalutamide to add to Lupron or Enzalutamide if Kaiser will pay the cost. I am meeting the my general oncologist on April 18th and will discuss this with him.

My oncologist leans toward Abiraterone since he has more experience with it. I will show him Mike Glode's note about Enzalutamide and we will negotiate from there. It is always a bit of a dance since Kaiser(my former employer) is my health care source, the oncologist is a friend but my second opinion is Mike Glode. I used to work with Mike's wife who was a Ped Infectious Disease consultant when I was in practice so it gets a bit complicated. My biggest rap on KP is that they have not generated expertise in prostate cancer oncology. All the oncologist treat prostate cancer. Nationally, KP does not have a center of excellence for prostate cancer either partly because the urologists have no interest and they see every patient first. This has been a great disappointment to me since KP does great research and has a captive population whom they can easily track electronically.

I get the Zometa every 6 months since I had no signs of osteoporosis and had regularly exercised throughout my life. I think it is mostly given to prevent bone mets which I have yet to have.

My Vitamin D level is the 25-OH and it was last measured at 48 but it has been a while since it was done. I do get sun but not excessive. I use a multivitamin plus an added 600Units daily.

Thanks for your interest and your continuing contributions. I saw you returned to Seedpods when they went back on-line.

[durango in reply to maack1]

Chuck many thanks for your input of knowledge you along with others on here have given me so much information that now I feel more confident to ask more questions of my doctors not that I expect to like all their answers but  if you don't know what to ask you for sure are not going to get to many answers it,s a bit like don't ask don't get best regards and thank you to all the other good old boys out there I don't know how to email people but if any one wants to contact me and share a yarn it does not have to be just about pc after all we have lives to live best regards Dave

[maack1]

Since "DenDoc" doesn't help me recall your actual name, would appreciate sending me an email so I can look up past exchanges. I am working with many patients so not easy to resurrect all patients from memory. [e-mail]