G9 w/ mets treatment options

Hi all,

Well, we've done the urologist, local (Lehigh Valley PA) medical oncologist, and second opinion at Fox Chase cancer center (also MO, Dr. Wong).

Treatment options for my husband from these look like:

1. Lupron only ( this is a given, he's already been on Casodex for a week, temporary)
2. Clinical trial with the following arms (no choice of course), this trial is still active for pre- castration resistant PC:
- A. Lupron+ TAK-700
- B. Lupron+Casodex
3. Lupron + chemo, docetaxel. See CHAARTED....though his mets (3) make this maybe questionable - Dr. Wong warned us that while study results impressive, with longer look it might turn out that for men like him with fewer mets, docetaxel early confers no benefit. Or maybe it does.

If he wants clinical trial it should get started right after first Lupron injection which is Monday. And options 2&3 are one or the other not both. He is pretty motivated to keep working so chemo while he's feeling fine (which he is now) would be a tough choice, especially if it would make him so sick as to prevent that.

Hi to the other G9 newbies facing treatment choices.... (Our docs have been surprised with our preparation level, this forum is a great thing! I need to go back and read posts about chemo experiences...)

All thoughts welcome.

Hi redhead

Thanks....sounds similar though you are a bit farther down the path. It's kind of amazing how little real data (ie big studies that have gone on long enough) there are for the newer drugs for those with mets. So it seems like we have to go on incomplete evidence.

I'm curious (if you're willing to share a bit of your thought process), how heavily did chemo side effects weigh in your husband's decision - it sounds like Provenge is appealing for other reasons. If so, was there one particular line of reasoning or evidence or personal story that sent you in that direction? (I don't know much about Provenge except that it is tailored for an individual's immune system.)

Good luck with all this and also insurance. For what it's worth, we listened to the CHAARTED presentation available on advancedpctalk forum, and the presenter said insurance used to fight it (Provenge) but he hasn't had anybody turned down recently.

cspivak,

The bottom line for my husband was the potential for severe gastro SE's with weight loss. We have spent the months since his diagnosis trying to put weight on him, 111 lbs. in February, now 124. His continual weight loss was one of the main reason he went to the doctor's last fall...when his PSA was 9.2. He fully understands the median survival benefit of the docetaxel/pred. but is not willing to sacrifice quality of life for increased length. He has talked with many people, seen the webinar on the CHAARTED results, discussed it with the reluctant brotherhood support group, talked with his medonc many times, talked with me and finally decided against it. We just returned from a vacation in Alaska where we didn't think too much about PCa and he had made the decision while we were traveling and told me when we got home. Two days later, at medonc appt., we developed new plan to try for Provenge...you know the rest.
Frank just really believes that he wants his own immune system to be super-charged to fight the cancer activity. Doc has ordered new CT/nuclear bone scans to see where he's at as we're changing the treatment plan...so will be nervous to get test results. Frank originally had a bone biopsy to have a definitive diagnosis of mets to his bones which was positive for adenocarcinoma, probably the worst day in all this so far.
Feel free to ask all the questions you want...
Lisa

redheadskier said...
cspivak,

Good morning, my husband was diagnosed in late February with Gleason 9, multiple mets to bones, no lymph node involvement, age 59. He immediately began the Casodex, followed shortly thereafter with his first Lupron depot shot. His PSA nadir was 0.2. His oncologist offered him the docetaxel/prednisone chemo immediately after the CHAARTED study was presented in Chicago. Frank and I thought long and hard and he has decided to decline chemo. Instead, he did NOT get his third Lupron shot last Tuesday and is trying to have two rises in PSA and qualify for Provenge. MedOnc is totally on-board with this and we will see what the insurance company throws our way. Once he qualifies, Lupron will be added back into his treatment plan. I have always been interested in Provenge and Xofigo earlier in his treatment, just believe protocols/studies need to catch up with all the new drugs available for metastatic PCa. He is a little nervous to discontinue the Lupron but really wants Provenge...
So, this is where we're at...just sharing, not offering advice.

Good luck with all the decisions you'll have to make. You are on the right path learning as much as possible.
This forum is the best!

Lisa

Hi Lisa:

I did what you and Frank are trying to do, get the 2 PSA increases to qualify for Provenge. It was harder to do than one might think, which I guess is a good sign. Since I was on 4-month Lupron and it has a fairly long half life, I did it by suspending taking the Zytiga/Prednisone. This is where ultrasensitive PSA test was a help to show the necessary two PSA increases at least 14 days apart.

In July my Baseline PSA was <0.04 when taken at Chicago Prostate Center, the lowest it has ever been.

The next one on last day of July was PSA = 0.03 which is not directly comparable to <0.04. So I had to have a 1.5T MRI with endorectal coil on Aug 12 and figured that would cause PSA to rise and it did just enough to =0.04 which counts as an increase over <0.04. This was about when my 4-month Lupron shot would have been due.

Thenn on Aug 26, having been off Lupron for about 2 weeks and never really on Zytiga much (4 days the first time) I took a 26 mile bike ride the day before. Instead of getting out of the saddle when I could not avoid a pothole, I deliberately went through as many bumps as I could while seated, and finally achieved PSA=0.05.

I then resumed Zytiga, but Dr Jeffrey Turner from Scholz/Lam/Turner told me to not take the 5 Mg Prednisone twice a day and instead take 50 Mg Inspra (Eplerenone) once a day in anticipation of upcoming Provenge and SBRT radiation.,

I had my first Provenge cell collection in Van Nuys CA last Friday and have my fist Provenge re-Infusion on Monday in Marina del Rey CA. I live in FL but the Provenge foundation is generously paying all my travel expenses which could have been substantial for someone now retired and on fixed income. So far the Provenge process has been uneventful.

BTW you mentioned potential insurance concerns. Provenge foundation would help on that too, including copays and deductibles but mine was all covered by Medicare/UHC AARP Meiddcare supplement Plan F.

Do tell Frank to follow the instruction to wear sweat pants as after hydrating so much for three days to make the veins behave during the process, I had to void part way through and they could not take the needles out of either arm. Nurses are used to it, and as the saying in Star Wars go, after being on Lupron since 3-28-13, nothing to see here anyway:}.

Not to hijack cspivak's thread, but just as background my situation is a little different. I am also G9 (4+5) originally diagnosed Oligometastatic with bone mets to spine and sacrala ala. This summer my bone scan came back clear of mets and was confirmed with an F18 sodium scan but that advanced scan did show some suspicous lymph nodes which the C-11 Acetate both performed by Dr Fabio Almedia in Phoenix did show 3 micro mets all contained in pelvic region.

So unlike Cpivak and unlike Frank, I, with no bone mets any more, was eligible for radiation but not for surgery.

The other difference is I could easily lend Frank about 50 pounds and still not be underweight. Dr. Chris King at UCLA told me being obese actually helps protect my rectum and bladder during radiaiton and perhaps I overreacted to being helped:}

cspivak said...
Hi all,

Well, we've done the urologist, local (Lehigh Valley PA) medical oncologist, and second opinion at Fox Chase cancer center (also MO, Dr. Wong).

Treatment options for my husband from these look like:

1. Lupron only ( this is a given, he's already been on Casodex for a week, temporary)
2. Clinical trial with the following arms (no choice of course), this trial is still active for pre- castration resistant PC:
- A. Lupron+ TAK-700
- B. Lupron+Casodex
3. Lupron + chemo, docetaxel. See CHAARTED....though his mets (3) make this maybe questionable - Dr. Wong warned us that while study results impressive, with longer look it might turn out that for men like him with fewer mets, docetaxel early confers no benefit. Or maybe it does.

If he wants clinical trial it should get started right after first Lupron injection which is Monday. And options 2&3 are one or the other not both. He is pretty motivated to keep working so chemo while he's feeling fine (which he is now) would be a tough choice, especially if it would make him so sick as to prevent that.

Hi to the other G9 newbies facing treatment choices.... (Our docs have been surprised with our preparation level, this forum is a great thing! I need to go back and read posts about chemo experiences...)

All thoughts welcome.

Your treatment options look solid. Being on Casodex with bony mets will help you avoid the Testosterone and PSA Flare that possibly would have happened if you had gone onto Lupron immediately,

For the trial see the threads from Sonny who was on the trial for a while and also see the Immunotherapy thread where Wampuscats and others have been on a similar Prostavac trial at NIH in Baltimore.

While doing forum searches I came acorss these threads

IMMUNOTHERAPY Club (Provenge/Prostvac)

www.healingwell.com/community/default.aspx?f=35&m=2948232&g=3183570#m3183570

that has a lot of imbedded links in it

Here's one of several from Sonny

www.healingwell.com/community/default.aspx?f=35&m=3020800

This is one of the more upbeat threads as Sonny later had to come off the TAK700 but is now considering an ipilumimab trial

www.healingwell.com/community/default.aspx?f=35&m=3002147

You can do forum searches to find even more past threads but this gives you a subset.

The old rule used to be to avoid chemo as long as you could but with the impressive clinical trial results many oncologists are pushing it closer to the front of the treatment options. The novelty of those results has not worn off as at last weekend's PCRI Prostate Cancer research Institute at LAX Marriott, all the top gurus who spoke were still very positive about such a superior improvement (have heard various numbers 14 months, 17 months depending on the measure) wheras all the usual treatments approved past few years by FDA score about 4 months.

Good luck whatever you decide. Now that you are on Lupron, you can arrest the growth of your cancer and take some time making the deciison that is right for you.

There is no right answer as to order to take these many remedies, just happy there are so many choices as opposed to even five years ago.

LupronJim

Lisa the Provenge folks are super helpful. You can find a lot on Provenge.com where the only 2-page application is available in PDF form. You can also call their help line even before you are approved at the numebr listed on their site, then choose option 6.

It's true they have a vested interest in building a bigger base of satisfied clients to help future growth, but great for those of us new in the pipleine.

LupronJim

Carolyn - good to see you are already posting on Tony Crispino's site. They are a bit different in that they deal only with advacned PCa and also have a few doctors who post there.

Most doctors avoid forums since it can open them up to liability concerns.

advancedpcatalk.freeforums.net/thread/134/takeda-edited-orteronel-research-tak700

You should register there so you do not have to enter a Guest name every time you post

Here's another site dedicated to advanced PCa that I found out about at last wekend's PCRI conference at LAX Marriott (Prostate Cancer Research Institute)

advancedprostatecancer.net/

is run by a guy named Joel Nowak who like Tony Crispino and Tall Allen are all laymen with respect to medical degrees but should each have an honorary degree due to their vast knoeldge and PCa advocacy.

LupronJim

PS - also sent you an email. Thanks for updating your forum profile with your email ID as posting them here which is open to internet folks can open you up to spam whereas forum profile is only viewable by registered HealignWell memebers.