Need some help and advice for a friend with advanced PC

I think Provenge is a good option but should be used as early as possible. I think Provenge should have been started already.
Some people get some help from estrogen pills or patches.
Please pass along my best wishes.

For DH ......

  My background, at least early one, with Advanced Prostate Cancer is very similar to most of what DH has gone thru. I am 70 years old, and was first diagnosed with PC at the age of 60. My first treatments, after a biopsy, a bone scan and consultation with a local highly respected PC Oncologist, was .... first to get external radiation (in 2004) - 5x a week for 5-weeks under the direction of a local oncologist/Radiologist ... then go to the Chicago Prostate Cancer Center for a Brachytherapy using 96-seeds (in 2004). My dealings with a Urologist were pretty minimal.

  For 6-years, it did seem as though the combined treatment did work. And by the way, I chose that treatment as opposed to prostate removal because of the studies (at that time) linking incontinence and serious ED to the removal of the Prostate. I was so convinced my cancer was gone, that I did not keep a journal thru that timeframe - just annually had a PSA test.

  However, in 2010 ... my PSA started to move up - first just beyond 4.0 at which time I began to think about this seriously. So .... up to this point my treatments and timeframe were very much like that of DH (except I did not see radiation treatments in the past for DH). 

  One of the first types of treatments, under my new and third Urologist, was to go on Casodex for a few months - and then onto Lupron in late 2011. Here again, are two types of HT that we share in background. My Lupron shots have (after the first two) been every 6-months, so I believe I am getting 45ml twice a year. I have been very fortunate that the side-effects have been minimal ... tired - of course, hot flashes just the first week-end of the first shot, and becoming very emotional.

  Now ... the treatment types we have shared changes. I was in the hospital three times in 2011/2012 with essentially kidney failure. From early 2011, I have also been under the care of a good local Oncologist - and his strong opinion was the PCa (advanced PC) moved and blocked portions of the at least the right kidney - starting my kidney problems. So I am sensitive to and understanding of other problems being created by PCa. My kidney problems are under fair control now and have been for about a year.

  But ... back to the PCa ... my Oncologist started me on Zytiga (an oral chemo) in early 2012. I was on it for over 5-months, it was not covered well by my Part D Medicare coverage - and it did me no good. My PSA slowly and continuosly climbed during those 5+ months ... and the biggest side effect I had was total apatite loss the last 3 to 4-months on Zytiga. I did lose over 40 pounds - about 15 pounds too much - and my Oncologist took me off that med last July. Please bear in mind - side affects can vary tremendously from one person to another.  

  The next treatment did work however ...... it was an intervenous chemo called taxotere. Because of the system of delivery (by an IV), I did have to get an medical port put into my chest - a pretty simple day surgery operation. I was on it for 30-weeks ... on 3-week intervals ... so I had 11-treatments. It was fully covered by Medicare - and my PSA moved from 54+ down to 12+ during the timeframe of those treatments. The taxotere can be difficult on your body. With me, the only serious side effect was going on three day cycles of being constipated - then terrible diarrea ... over and over - for about 4- months of those 30-weeks. I did not have aching muscles or bones from this treatment - although some do.

  My Oncologist took me off of the taxotere in April because my PSA seemed to bottom out at around 12 ... and I went without any chemo for about 2-months. My PSA climbed from 12+ to just over 23 in just 6-weeks. So ... my next - and current chemo started less than three weeks ago.

  I am currently on Xtandi - one of the newer oral chemo drugs (just passed the FDA 11-months ago) ... and don't know what to expect yet. I am scheduled for a PSA test next week. I can say , so far, the side effects of Xtandi have been minimal ... so far!!! The cost is outrageous, but I have found some great avenues for reducing the cost to near zero - thanks to my Oncologists office.

  I hope the above medication history gives you some help. We did share many of the same treatments and timeframes until recently. Please put your hands into the best Oncologist you can find - or feel most comfortable with. My experiences have been the Oncologist is running the show ... and the Urologist is a supporting doctor. And I think, I may use a Urologist more than most with PCa because of my kidney issues.

  I would not fear chemotherapy ... unless your doctor has a reason to guard you from it. My experience with taxotere was very good - overall. The best of wishes to you.

 

I just got an email from my friend and she and her husband are really impressed with the posts from our members and the valuable shared information. Once again we are proving how valuable HW can be in our collective fights with the beast. My friend was so impressed that she will be joining HW and participate in the discussions about her DH. This is why I love HW and all of my HW brothers and sisters.

BTW my friend and I met on a cruise blog called Cruise Critics, she and her husband had booked the same cruise as our GFMPH Caribbean Cruise in December. She first contacted me a couple of months ago after I posted on the Cruise Critic blog  about the large group we put together of HW Prostate Cancer members. I am sure they will become part of our group as we all have so much in common.

Hi Spotor,

It sounds like you have an upbeat attitude that will help both of you as you slog through all the uncertainties and conflicting info about treatments.

Spotor said...
He said he has since realized that it is only offered after tradional radiation and after whatever meds are needed (be it chemo or not) to get PSA down and under control.

Here is what the FDA says: "Xofigo® (radium Ra 223 dichloride) injection is indicated for the treatment of patients with castration-resistant prostate cancer (CRPC), symptomatic bone metastases and no known visceral metastatic disease." Castration-resistance is defined as rising PSA while on a medication like Lupron.

labeling.bayerhealthcare.com/html/products/pi/Xofigo_PI.pdf

Xtandi is the new hormonal drug approved for use after docetaxel. Maybe he got confused by all the new "X" names.

- Allen

I am a 7+ ywar survivor of advanced pca. My original psa was 3200. Hormones failed. Last year I had provenge therapy. I am doing well. Email me for more info or to talk in person Todd

GM everyone,
I'm taking notes on all the informative posts regarding treatments and med names so that I can ask questions of Dr. Wall next time we see her.

I will definitely ask her to expand on her opinion of Provenge. (Todd, I'm glad you fared so well with it!!) After further wracking of my brain, I think she also said that it is a 'hard' treatment to go through, too.(?)

As for RA 2-23, I'll admit that I'm confused and disappointed. The radiologist now says he misunderstood the criteria and that much more must be done here (radiation and even chemo) before Johnny would eligible for the treatment. A complete 360d. turn from what he first said...bone lesions only and hormones no longer working. I hope I don't sound like some conspiracy theory nut when I say that I pray monetary reasons are not behind not wanting to send him somewhere else for treatment. There....I've voiced my worst fear!!

A lot will hinge on Johnny's next psa and the answers we get from both doctors to questions some of you have thankfully caused us to raise.

Happy hump day! Gotta' look for anything and everything to be happy about!lol

Spotor,
Provenge is a very easy treatment than is completed in 5 weeks. I advise you to seek a secobd opinion from a different doctor. The earlier a patient starts provenge the better the results. Procenge boosts your immune system to fight the disease. I am an advocate of the treatment. Please email me and I will give you my phone number Todd

Yes, I agree that probably the best care to be had is in Houston. But he (me, too) are not quite ready to give up on our doctor here. You're right about this not being her field of expertise...each time we see her she tells us about the searches she's done for Johnny condition and explains what she's come up with and why. For now I think we'd best badger (not quite the right word, but close!) her for answers and not try to tackle Houston.

Now I'm getting off subject but my sister who lived in Houston (as we did for many years till DH retired) died with multiple myeloma - another beast - several years ago. She was treated at MD Anderson and did not do well. Is this a reflection on that facility? No, of course not, yet sometimes even the best isn't the answer.

I will say that if we were still in that area it's where we would want to go..even with all the hassle involved. But we're not and this is our reality. For now at least.

But please continue with suggestions and advice re treatments. I am note taking!

GM,

Yes, both links were very interesting.  I just got through reading the one on Provenge (finally..it was too big for my screen and I finally got Johnny to change the zoom setting - I'm clueless - so that I could see it all) and I can see where Dr. Wall's initial reasoning was coming from though I don't think it - or any other treatment - should ever be ruled out. 

And why the brakes were put on RA223 are clearer now since it does say 'after' conventional radiation is performed or something to that effect.  So I'm ruling out conspiracy...for now.

Johnny's blood work later this month and subsequent doctor's visit should set the stage for further treatment.  Along with hearing her course of action, we'll have our many questions to bombard her with thanks to all of you!

I hear you. I read your post to him and he asked me to clarify some things that he thinks I may have been misleading about. He pointed out that she specifically stated that her searches were regarding the most recent treatments/meds (along with the clinical trial data) so she is not searching "just PC" per say. Plus, he reminded me that both our primary care physician and our urologist say she is 'the best' to be found...albeit for this area but then this is where we are.

I've read-up on these meds he's on since seeing her on June 17th....Ketoconazole and Hydrocortisone. First, let me say that he was basically just under the urologist's care prior to 6/17 and was receiving his Lupron shots from him. He did have a couple of fact-taking appointments with his ocologist over the past year or so just to give her a heads-up on his case, knowing that if-and-when the Lupron stopped working, she would take over his care. The only treatment she prescribed during that time, while the Lupron was working, was to add Casodex.

So, basically, she hasn't had much of a chance to show her stuff. And Johnny is adamant about her having that chance.

There have been good results with K&H so we are hopefully on the right track. Besides feeling good (a little tired but he isn't sure if it's the radiation or these new meds), he's optomistic AND he has faith in this doctor. Both are mandatory for any treatment.

Yes, we know it's very serious. In fact, one of Johnny's first questions to her was 'what is the worst case scenario?'. (I guess that is pretty common). And her answer was honest..maybe too honest for me. "In the unlikely event no treatment works, not good", and the time line she cited was brutal. So she knows and we know.

But PLEASE, everyone continue to contribute and I will continue to update although I don't think there's been enough time on these meds for her to say whether they are working or not on his next visit in 3 weeks.

I hope I've kind of rebuilt our Dr's rep.lol She called him at about 7pm one evening to give him the results of his pet scan and took the time to answer any and all questions that had come to mind. Not the norm for a very busy doctor!

Post Edited (spotor) : 7/20/2013 9:13:40 AM (GMT-6)

I was confused by some things you wrote and was hoping you could clarify:

spotor said...
And why the brakes were put on RA223 are clearer now since it does say 'after' conventional radiation is performed or something to that effect. So I'm ruling out conspiracy...for now.

Where are you seeing this? It is not in the indications, and no such qualifications were made in the FDA approval guidelines, which is the only thing that matters to get insurance approval. It offers a significant survival advantage to men in your DH's situation:

Alpha emitter radium-223 and survival in metastatic prostate cancer.

spotor said...
His Oncologist has had him on Ketoconazole, Hydrocortisone and Casodex since his 143 test result a month+ ago and we are hoping his next visit to her (next month) will show that these new meds are working.

Ketoconazole has been bumped to a third-line therapy after the introduction of Zytiga and Xtandi in the last two years. The new standard of care is to keep the mCRPC patient on Lupron while adding these new hormonal therapies. It was found that the Lupron is still partially active, and continues to suppress PSA albeit at a lesser rate.. They generally take the patient off Casodex because Casodex begins to feed the cancer rather than stop it. They found that removing Casodex lowers PSA.

I hope she has him on Xgeva or Zometa to prevent fractures from bone mets and reverse osteoporosis.

I've always found in working with doctors that it is important for the patient to take responsibility for his own health. Don't be afraid to be insistent and show evidence contrary to what they are saying -- it's your life. Docility will get you nowhere.

- Allen

Spotor,

JNF in Atlanta area made a recommendation in his post above for a well known advanced PC doctor at Tulane  "Dr Oliver Sartor at Tulane is very well regarded with advanced cases and goes outside the box with treatments. That is where I will go if my PSA goes up"

 

From where you live this would be a short one day trip to New Orleans. And Vanderbilt does have a respected PC department.