My possible XTandi / Zytiga journey

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JohnKeats
Regular Member


Date Joined Jun 2012
Total Posts : 209
   Posted 12/11/2012 3:52 PM (GMT -6)   
It looks like my tremendous luck with Lupron/Casodex is coming to an end. After one year of dramatic drops, my PSA started to rise. Six weeks ago, they took me off the Casodex to see if Casodex withdrawal would drive down the PSA, but the PSA went up again from 1.6 to 3.79. Although the term was not used, it seems I've become castrate resistant.

Anyway, the next step for me is either XTandi or Zytgia. I haven't been through chemotherapy, but oddly enough as I was sitting with my oncologist in the exam room, she got the alert on her smart phone that the FDA have approved of Zytiga in a pre-chemo setting. The timing couldn't have been better.

By the end of this week, she's going to see if she can get insurance approval for either one or the other. Her preference would be XTandi but if Zytiga is covered by insurance then it may be that. It feels too much like the tossing of a coin if you ask me, but I honestly don't know which one would be better for me.

I'm getting new bone scans next week to see if there is tumor progression. I'm already starting to feel some new bone ache in the hips and back, but that doesn't necessarily have to do with cancer progression.

I'm very depressed about this. I was hoping my vacation on lupron would have lasted longer to benefit from the on-going breakthroughs and clinical trials. Like many of you, I'm finding ways to be optimistic. I know there are many options and many drugs open for me in the future, but I still have a dread feeling in me as if I have just been diagnosed for the first time. All of last night I was in shock and hardly got any sleep.

But I have to ask for an opinion. They took me off the casodex after two months of my PSA rising. The rise from my nadir was less than a single point, so I was always wondering if taking me off the casodex to provoke a withdrawal reaction was premature. What if the big rise in my PSA over the last six weeks from 1.6 to 3.79 was due to discontinuing the casadex? They are now saying they won't put me back on it because it looks like I'm castrate resistant (although that term was NOT used).

On top of everything else, I have the BRCA2 mutation which means I may have less natural defenses against tumor growth. There are clinical trials for BRCA2 which I'm looking into to, but being on either Zytiga or XTandi may exclude me.

The assumption is that my PCa is very aggressive and the short period that the Lupron worked is "not a good sign" and may mean that other androgen based therapies may not work as well for me as other men.

Again, I kind of expected this from the beginning, and it's common knowledge that ADT doesn't last forever, but it always feels horrible when it actually happens.

There's still hope. I haven't started anything new yet, I'm getting scans next week and another PSA in three weeks, but for now I'm very down.

What comforts me is that many of you are doing well or have done well on Zytiga and XTandi, and there's hope either one could work well for me. What bothers me is that my PCa may be so aggressive that it's possible that neither will work for very long.
Diagnosed 9/14/2011; Age 47; PSA 5,000+
Metastatic Stage 4, spread to entire skeleton w/femur fracture
Current therapy: Lupron/Casodex/Aredia
June 4, 2012: PSA 2.2, doing well with little discomfort
June 27, 2012: PSA 1.42
July 24, 2012: PSA 0.69 !!!!!
September 25, 2012: PSA 1.2 (Oops)
October 11, 2012 PSA 1.4 (not good)
December 10, 2012 PSA 3.79 (mCRPC)

SpecialLady
Veteran Member


Date Joined Nov 2011
Total Posts : 874
   Posted 12/11/2012 4:00 PM (GMT -6)   
I think that it was Dr.Myers who said that in a large percentage of his patients who come to him as "castrate resistant" he finds they are actually not. Has your doctor suggested second-line HT, like Ketokonazole?

about the timing of the news while you were in doctor´s office - wow, great moment, indeed! Hang in there!
Father (69 now) diagnosed with PCs in Jan 2011:
DRE positive, PSA 7.5, biopsy Gleason 6, second expert opinion: Gleason 7 and 8.
two inconclusive bone-scintigraphies, MR scan showed 2 bone mets
Feb 2011: Started hormonal therapy (Trelstar+Casodex) in Jan 2011
Jan 2012: Added Zometa
Mar 2012: went "off" hormonal therapy after PSA reached 0.055

robertC
Veteran Member


Date Joined May 2011
Total Posts : 969
   Posted 12/11/2012 4:39 PM (GMT -6)   
XL184 cabozantinib has been approved for thyroid cancer and looks to be helpful with bone mets. (Phase 3 trial prostate cancer.)
Zimac seemed to get some benefit from one Phase 1 trial.
There was something in the news today where scientists altered T-cells to fight leukemia in a trial group.
Good luck with your condition.

turner
Regular Member


Date Joined Jan 2010
Total Posts : 119
   Posted 12/11/2012 5:18 PM (GMT -6)   
John
6 weeks isnt all that much time. My psa continued upward for a month or so,then took almost 12 weeks to drop back down after we stopped casodex. Lupron continues... for now.Good luck with your scans and hopefully your next psa shows a reversal. Keep us posted

diag2/09@49 3 wks before 50th bday
Father died of Pca nov.93'
psa4.5- t2b,5 of 6 cores pos.5,20,50,25,5 %
gleason3+4
N/S RALRP 4-20-09
Path:lymph node -
seminal ves -margins- preineural+
gleason 3+4-stage pt2c,tumor vol 40
3 mo.1
6mo.3 oh no
7mo.psa .5 s*^t!
SRTFeb-10'
aug 11'-psa7.4,scans show tumor,start clinical trial@UofMich+ADT2
finished trial mar12 psa<.1
psa rising 6-12'casodex stopped

Passages
Veteran Member


Date Joined Sep 2012
Total Posts : 695
   Posted 12/11/2012 5:20 PM (GMT -6)   
My basic comment is I agree, it is like being re-diagnosed and understand thoroughly about the discouragement......yet since we started this journey, so much more is known and there air many more possibilities - particularly for you guys earlier on this path. Will let the others comment on their opinions and suggestions - my mind a bit fried right now. Hang in there - there is hope.
dx 49 PSA RP, 1996
5+ yrs later radiation,
Study pomengranate PSA rise.
7+ yrs Lupron
9/12 path arm break, bone mets, tumors. Study For Custersen. Control on Taxotere 9 treatments 10/18/11-4/12 PSA 5.2.
Zytiga -no se but PSA up to 57-5/12 to 7/12
8/12 started Jevtana
9/26 PSA 46.6 Se minimal fatigue, chemo brain.
10/15 45.3
11/6 45.2
12/4/12 54.4

Raddad
Veteran Member


Date Joined Jul 2011
Total Posts : 1857
   Posted 12/11/2012 6:20 PM (GMT -6)   
John

On Xtandi - The current FDA approval is specific; it has been approved for men who are castrate resistant after they failed chemotherapy.

Will your medical team still allow you to go on Xtandi?

Also - it is still possible the PSA could go back down, Have Hope my brother.

Hugs

Bud

We will beat this crap
65 - April 2013
A Better Man tinyurl.com/28e8qcg
12 7 11 - 1447 (It's just a number! )
Scans showed active prostate cancer widespread in bones
HT treatments & Zometa for bone
31 10 11 - 46.6 Cheers!
25 1 12 - 75 - Crap
22 2 - 99
22 3 - 149 - Start Zytiga
25 4 - 113 | 22 5 - 66 | 19 6 - 38 | 19 7 -34
21 8 - 27.4 | 21 9 - 36.8 | 6 10 - 33 | 16 11 - 66 - Staying with Zytiga

pepsiguy
Regular Member


Date Joined Aug 2012
Total Posts : 132
   Posted 12/11/2012 6:28 PM (GMT -6)   
John,
I know it has to be difficult and I'm not looking forward to the day my ADT fails. I pray that you will have continued success with something else.
 
Diagnosed@55 GL 8-9
8/12 PSA 212
CT pos lymph, Bone scan inconclusive
8/12 Casodex/Zoladex
9/26/12 PSA 2.6 T 15
11/27/12 PSA .8 T 2 recvd 2nd shot

JohnKeats
Regular Member


Date Joined Jun 2012
Total Posts : 209
   Posted 12/11/2012 6:31 PM (GMT -6)   
Raddad, I was told that getting Xtandi before chemo was a matter of "how we ask." She seemed confident she could get it for me, however we don't know about the insurance, which is why she's also looking into Zytiga. It could mean the difference between $7,500 a month and $20.

I was told that the casodex has a half-life of six weeks, which means after six weeks, half of it should be out of my system. That means that right now half of it is still in my system, which may explain the PSA rise if indeed the casodex is "feeding" the cancer.

I'm seeing my second oncologist on Monday so I'll ask him about Keto, and whether we should wait another few weeks to see what happens.

RobertC, the leukemia t-cell trial was literally right across the street from the cancer center that I go to in Philadelphia. It's exciting news.
Diagnosed 9/14/2011; Age 47; PSA 5,000+
Metastatic Stage 4, spread to entire skeleton w/femur fracture
Current therapy: Lupron/Casodex/Aredia
June 4, 2012: PSA 2.2, doing well with little discomfort
June 27, 2012: PSA 1.42
July 24, 2012: PSA 0.69 !!!!!
September 25, 2012: PSA 1.2 (Oops)
October 11, 2012 PSA 1.4 (not good)
December 10, 2012 PSA 3.79 (mCRPC)

Southern Comfort
Veteran Member


Date Joined Jul 2011
Total Posts : 994
   Posted 12/12/2012 2:26 PM (GMT -6)   
Thinking about you .. hang in there.
Age 52; dx at 50, PSA 54.9
open RP, 2010; removed 14 lymph nodes
Pathology report: T3bN0MX, SVI, neg margin, G9(5+4)
36 mo of ADT2: 24 down, 12 to go
Adjuvant RT, 75.6 Gy, including lymph nodes, 9/11
Adjuvant Taxotere (6 x 60 mg/m2), 6/12
Latest PSA <0.1, T=25

Infohound
Regular Member


Date Joined May 2012
Total Posts : 232
   Posted 12/12/2012 3:15 PM (GMT -6)   
JohnKeats, I am so sorry to read what you're going through. I can completely imagine I'd be having the same fears and dread you are, but even so I will echo the positive stuff others have said. There's still time for the "stopping casodex" thing to work. And if they didn't use the phrase "castrate-resistant," don't you jump there yourself -- as special lady mentioned, Dr. Myers thinks many doctors classify cancer as castrate-resistant too quickly. He is my husband's doctor, and he told us that people with aggressive PCa need more aggressive ADT, or else it'll look as though ADT isn't working. The fact that Zytiga is a next step option makes me think your doctor wasn't just trying to avoid depressing phrases -- zytiga is a hormone therapy. She must not have concluded ADT has run its course for you.

If you do start Zytiga, Myers told us it has roughly five times the cancer-killing power of Casodex.

You've been on double blockade -- have they ever talked about triple blockade? Maybe adding Avodart to your mix would help.

I don't know enough to know if it'd be more/less relevant now, but since you and my husband are both in the "especially crappy cases club" I'll throw this out there -- he's also on Sprycel, which Myers said is showing great promise in PCa patients with bone mets. Sprycel is FDA approved for some other type of cancer, a type of leukemia I believe, but we appealed for it and got approved (and we have small-company-provided, definitely not gold-plated medical coverage). It may or may not help, but I figured it couldn't hurt to have yet another option to think about. We've got a lot of weapons in this fight.

Don't let this get you down. You came to terms with an initial diagnosis that would have knocked many people down for the count -- you can do it again and kick back this latest challenge.
Age 58
G9 (5+4)
12 of 12 cores positive, 100% involvement
Dx 5-2012 Metastatic PCa, lymph nodes & extensive bone mets

PSA 61.1 (5-2-2012) -- prior to any treatment
PSA 48.7 (5-29-2012) -- after casodex only
PSA 4.6 (6-11-2012) -- 11 days after 1st firmagon injection
PSA 0.15 (7-2012)
PSA 0.04 (7-27-2012)
PSA 0.01 (9-11-2012)
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