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Posted 9/24/2010 11:56 PM (GMT 0)
 I am looking for info from anyone with a history of a high PSA.  My husband is only 54 and was diagnosed in July 2010.  PSA was 2924, Gleason Score 8, spread to lymph nodes and bones.

First had kyphoplasty to repair compression fracture of L5 vertebra (that's how the cancer was found).  Currently taking Casodex, had 1st Trelstar injection on August 6th.  1st Zometa infusion on 8-25, 2nd today on 9-24.  Currently receiving 8th of 13 radiation treatments to the lower back.

Good news is his PSA dropped to 454 after 30 or so days after the Trelstar injection.  His lymph nodes and bones are also responding well to the hormone therapy.  Next Trelstar is scheduled for November 5, 2010.

Questions:  Are we doing enough?  What about triple hormone blockade?  Has anyone had any experience similar?

We live near Chicago, Il and have easy access to any hospital there.  Which one would be our best for a 2nd opinion?

Posted 9/25/2010 12:12 AM (GMT 0)
Have you read Dr, Walsh's book, "Surviving Prostate Cancer"? the last chapter, chapter 12 covers "Help for advanced prostate cancer".. You have many options and with aggressive treatment and a little luck, your husband will enjoy many years of life..

Your HT is still in the basic stage. There are many highly effective variations that a Medical Oncologist who specializes in Prostate Cancer can try..Everyone is different, there is no "Standard Treatment"....Glad you came back, we are all here for you..
Posted 9/25/2010 1:05 AM (GMT 0)
Patcharoni,  The Wichita chapter of UsToo provides a list of doctors that are considered the best in their field.  The only recommended oncologist in Illinois is: John Visconti, Oncology Ltd., 33 Bronze Pointe, Suite 150, Belleville, IL 62226 618-233-8000 [email protected] . Carlos    
Posted 9/25/2010 1:29 AM (GMT 0)
If you are able to travel, it might be worthwhile to try to see one of the leading experts in prostate cancer oncology.  Of course, there are different views about  who these leading experts are, but some would include Christopher Logothetis at MD Anderson in Houston; Olivor Sartor at Tulane; Maha Hussain in Michigan; Howard Scher at MSK in New York; Mario Eisenberger at Hopkins; and maybe some who are not affiliated with teaching hospitals, such as Charles "Snuffy" Meyers in Virginia or Mark Scholz in California.  Of course, there are many other capable doctors with expertise, so these are just a few examples.  But if it were me, I would be looking for some advice from a true leading expert (even if I would then obtain the actual treatments locally).

Best wishes,

Posted 9/26/2010 4:05 AM (GMT 0)
hi Patcharoni,
Your husbands case is severe and there is good reason to see the best available oncologist. Travel can be expensive, but your husband will only have to start with consultation and receive local treatment.

It is likely necessary to look beyond Trelstar at second line HT therapies to go along with Trelstar. Additionally your oncologists will also likely mention chemotherapy with a taxan like Taxotere or Cabazitaxel. Additionally I would look into Abiraterone and Provenge. While Abiraterone is not yet generally released it will be this year...It is the ultimate testosterone blocker.

Second line HT drugs to consider will be Ketoconazole, Nilandron, DES (Estrogens), Leukine, and sandostatins. Additionally there are several clinical trials that can be helpful.

Also note that I have seen guys with higher PSA's do well for quite some time. But I won't be able to say more than a positive mindset is very helpful. I am sorry for his diagnosis, but I will do anything I can to get you any information you need. I am easy to find on the internet if all you or your husband needs is someone to talk to.

May peace also be with you both...

Tony Crispino
Chapter President
UsTOO Las Vegas
Posted 9/26/2010 4:55 AM (GMT 0)
I have looked up a couple more Oncologists in Illinois. These two are well known. While I do not know Dr. Visconti mentioned above by Carlos, that certainly does not mean he isn't good.. Here are the names out of a recent book that Dr Marc Scholz included as recommended:

Dr. Daniel Shevrin in Evenston
Dr. Walter Stadler at the University of Chicago.

The latter is tied to my oncologist Dr Nicholas Vogelzang who used to be the Oncology Medical director there at U of C. Vogelzang now live in Las Vegas but still keeps a title there.

You can probably skip the above book recommendation as it only has a chapter tied to what would apply to your husband. instead I would recommend "Beating Prostate Cancer: Hormonal therapy and Diet" by Charles "Snuffy" Myers. This book is more for the advanced cases out there.

Tony
Posted 9/26/2010 4:57 AM (GMT 0)

Patcharoni said...
 

We live near Chicago, Il and have easy access to any hospital there.  Which one would be our best for a 2nd opinion?

Have you been to Northwestern University downtown, one block off Michigan Avenue east of Niketown (St Claire & Huron)?  The Robert H. Lurie Comprehensive Cancer Center (a "Comprehensive Cancer Center" is the highest honor bestowed by the National Cancer Institute) is on the 21st floor.  I suggest an appointment with Dr Gary MacVicar, a medical oncologist specializing in prostate cancer.  He is co-author & panel member of the NCCN's "Clinical Practice Guidelines in Oncology for Prostate Cancer", which is the clinician's guide book for treatment, and also author of numerous research papers on treatment of advanced prostate cancer.

NCCN's Guidelines:  http://www.jnccn.org/content/8/2/162.full.pdf

 

Posted 9/28/2010 12:50 AM (GMT 0)
Thanks to everyone for all the info!! We have a consultation appointment with Dr.MacVicar on Oct. 11th. Have ordered Dr. Myers book and added pomegranate (sp?) juice to diet.

Heading to the library tomorrow for Dr. Walsh's book and to the health food store for ground flaxseed. Have visited the UsToo and yananow websites and found them to be helpful.

Have a lot of questions for Dr. about diet (What about NO DAIRY? Aren't yogurt, eggs, and skim milk good for you? Had assumed NO Dairy meant the obvious fatty cheeses and whole milk and ice cream.)...about treatment (Should we add avodart and does that change our treatment to a "triple hormone blockade"?)and about minerals and supplements (Already taking oral Vit D and calcium in addition to Zometa and multivitamin, but what about selenium, Q10, and Graviola?).....

Also, why does one person get Trelstar monthly, and another is recommend the quarterly injection?

I am so thankful to have found this sight (God only knows how I did it)! Thanks again!
Posted 9/28/2010 1:03 AM (GMT 0)
I suggest you ask the doctor before starting on flaxseed. There have been some reports that it actually feeds prostate cancer!
Posted 9/28/2010 6:36 PM (GMT 0)
Thanks very much for that last post!!!
Posted 9/28/2010 6:51 PM (GMT 0)
Medved:

I thought that was flaxseed oil, but ground flaxseed is good for you.

Diet is so confusing and the rules keep changing... even reversing!

Mel

Posted 9/28/2010 8:12 PM (GMT 0)
Hi patcharoni. I would like to chime in with my two cents. I was given less than a year to live. That was 4 1/2 years ago. I believe attitude is everthing. Keep the faith and never give up hope. You can look at my signature fore my stats. God bless you. Todd
Posted 9/28/2010 8:34 PM (GMT 0)
As for the LHRH drug shots or injectables/implants (Lupron, Zoladex, Trelstar, Eligard etc.)
you can get them in different amounts, even Eligard in 6 mo. or 1 year implant. Some docs or patients might want the option of stopping the drug or having that option, and thus maybe that is one reason for a monthly shot or less than 6 mos. or 1 yr. implants (the implants could likely be removed but hastle situation), same idea with quarterly  useage which seems very common. Might even have more billing associated with monthly vs. quarterly and such, well would have cause of office visit and billing more often over time frames. The 1 year implant thing is convenient for the doctor and maybe or maybe not for the patient.  You might have to start looking at alot various drugs used in PCa, read some of that at www.hrpca.org 

No to flaxseed oil
Considering where you are at and what additional items you are taking, perhaps an onco doc can help sort that out, selenium probably of no value. Vitamin D is not absorbed as well as D3 is, ask onco if it is still useful with you doing Zometa and calcium right now. Alot of undefinables and things vary from patient to patient in PCa is what I have been seeing. Myers book should be worth reading, also Dr. Strum's book A Primer on Prostate Cancer (onco-doc).  Be as active as you can in learning about options.

Post Edited (zufus) : 9/28/2010 2:41:07 PM (GMT-6)

Posted 9/29/2010 12:29 AM (GMT 0)
I sure appreciate all the information.

Todd, it is so reasuring to hear from someone with similar circumstances as my husbands. He was diagnosed with a sciatic nerve problem in May 2010, and although he went back and forth to the Dr.s and emergency room, they continued to treat him as a sciatica patient!..Although his lungs are clear from cancer, he ended up in the hospital Aug 30 to Sept. 4 with double pneumonia. His tests did indicate cancer in his pelvis as well as his spine and lymph nodes. Your "story" is amazing and very encouraging. It helps me to stay positive! May you be blessed with continued good news for many years!!

All of these posts are such a huge help. I look forward to checking periodically for any new updates. I'm checking on all the nutrition hints, and looking for all of the books.

Thanks to you all!
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